tag:blogger.com,1999:blog-48776946660613628172024-03-14T01:06:02.498-07:00IBDoc and MeIBdoc and mehttp://www.blogger.com/profile/04644405174471346212noreply@blogger.comBlogger36125tag:blogger.com,1999:blog-4877694666061362817.post-55913334610719853722022-09-05T06:17:00.001-07:002022-09-05T06:17:43.361-07:00Back to life, back to reality <p class="p1" style="color: #454545; font-family: "Helvetica Neue"; font-size: 12px; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px;"><br /></p><p class="p2" style="color: #454545; font-family: "Helvetica Neue"; font-size: 12px; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px; min-height: 14px;"><br /></p><p class="p1" style="color: #454545; font-family: "Helvetica Neue"; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px;"><span style="font-size: large;">So what are you supposed to do? Where’s the handbook? Where’s the guiding hand that shows me how to integrate back into society? Where’s the blood tests or the psychologists to tell me, yes, you are in remission, and yes you can rejoin society after 12 years of utter exhaustion brain fog nausea bloating etc.So this is me in August 2022, I feel alright, that’s right you heard it, I actually feel alright, not in the sense that I can run a marathon, and not in the sense of that 40 year old I left behind 12 years ago, where energy and brain power was never an issue.</span></p><p class="p2" style="color: #454545; font-family: "Helvetica Neue"; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px; min-height: 14px;"><span style="font-size: large;"><br /></span></p><p class="p1" style="color: #454545; font-family: "Helvetica Neue"; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px;"><span style="font-size: large;">As the saying goes, this is my ‘new normal’, and I’ll take this new normal. I reckon I’m running on about 75% to 80% day to today, which means I can actually get up, do roughly a full days work (give or take a few hours) make the evening meal for my family and actually plan a walk or a visit to friends, which was unthinkable in my worst years.</span></p><p class="p2" style="color: #454545; font-family: "Helvetica Neue"; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px; min-height: 14px;"><span style="font-size: large;"><br /></span></p><p class="p1" style="color: #454545; font-family: "Helvetica Neue"; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px;"><span style="font-size: large;">So, after a twelve-year hiatus, only now do I recall the pace of working life here in the UK, it’s demanding! Intense! And leaves little time for self-friends or family.</span></p><p class="p2" style="color: #454545; font-family: "Helvetica Neue"; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px; min-height: 14px;"><span style="font-size: large;"><br /></span></p><p class="p1" style="color: #454545; font-family: "Helvetica Neue"; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px;"><span style="font-size: large;">I’m pretty quickly finding that a 40 hour week is out of the question for me, as I have had a few “crashes” along the way, by “crashes” I’m mean, spending the whole weekend not able to do anything but sit in bed and wait for my energy levels to return, and the brain fog to clear.</span></p><p class="p2" style="color: #454545; font-family: "Helvetica Neue"; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px; min-height: 14px;"><span style="font-size: large;"><br /></span></p><p class="p1" style="color: #454545; font-family: "Helvetica Neue"; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px;"><span style="font-size: large;">I still find it hard to be kind to myself, to know when too much is too much. It’s engrained in us to work hard isn’t it, put the hours in, with little consideration to how this life style impacts the mind and body.<span class="Apple-converted-space"> </span></span></p><p class="p2" style="color: #454545; font-family: "Helvetica Neue"; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px; min-height: 14px;"><span style="font-size: large;"><br /></span></p><p class="p1" style="color: #454545; font-family: "Helvetica Neue"; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px;"><span style="font-size: large;">As IBD suffers, we are in touch with our bodies, we instantly know when we have to stop, because we literally can’t get out of bed, the trick is to find that balance. I am lucky because I’m the CEO of my organisation, so I can govern what hours I work, but it’s took me a while to put myself first, an example of that is, I now only take meeting after 12.00pm, as I’m useless in the mornings and consistent early starts leads me to crashing. I prioritising what meetings I actually need to attend and what parts of the organisation needs my attention. It’s still demanding and I do constantly need to remind myself I don’t have the energy levels of abled body people and that regardless of periods of wellness I still have Crohns disease.</span></p><p class="p2" style="color: #454545; font-family: "Helvetica Neue"; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px; min-height: 14px;"><span style="font-size: large;"><br /></span></p><p class="p2" style="color: #454545; font-family: "Helvetica Neue"; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px; min-height: 14px;"><span style="font-size: large;"><br /></span></p><p class="p1" style="color: #454545; font-family: "Helvetica Neue"; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px;"><span style="font-size: large;">In my ‘Crohns” life, I saw my consultant face to face 6 weeks ago, which was the first time in two years! The meeting went well, I’m 9 months into Stelara, self injecting from the comfort of my home, which beats going to the hospital every month, I believe it’s starting working it’s magic in the last 6 weeks, The Ibdoc results have been encouraging and the recent colonoscopy I had was encouraging, I’m still not fully in remission as there are still a couple of stubborn small ulcers, but the colon and rest of the small bowel is clear. Hopefully the stelara will eventually heal the small ulcers.</span></p><p class="p2" style="color: #454545; font-family: "Helvetica Neue"; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px; min-height: 14px;"><span style="font-size: large;"><br /></span></p><p class="p1" style="color: #454545; font-family: "Helvetica Neue"; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px;"><span style="font-size: large;">I will keep you up to date in my next post.</span></p><p class="p1" style="color: #454545; font-family: "Helvetica Neue"; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px;"><span style="font-size: large;"><br /></span></p><p class="p3" style="background-color: white; color: #e4af0a; font-family: Arial, Tahoma, Helvetica, FreeSans, sans-serif; font-stretch: normal; font-variant-east-asian: normal; 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font-weight: inherit; line-height: inherit; margin: 0px; padding: 0px; vertical-align: baseline;"><span style="font-family: arial;"><a href="https://www.calprotectin.co.uk/" style="border: 0px; color: #2047af; font-stretch: inherit; font-style: inherit; font-variant: inherit; font-weight: inherit; line-height: inherit; margin: 0px; padding: 0px; text-decoration-line: none; vertical-align: baseline;"><span class="s2" style="border: 0px; color: #e4af0a; font-stretch: inherit; font-style: inherit; font-variant: inherit; font-weight: inherit; line-height: inherit; margin: 0px; padding: 0px; vertical-align: baseline;"><b><span style="font-size: large;">https://www.calprotectin.co.uk/</span></b></span></a></span></span></p><p class="p2" style="background-color: white; color: #454545; font-family: Arial, Tahoma, Helvetica, FreeSans, sans-serif; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px; min-height: 14px;"><span style="font-family: arial;"><span style="font-size: large;"><br /></span></span></p><p class="p3" style="background-color: white; color: #e4af0a; font-family: Arial, Tahoma, Helvetica, FreeSans, sans-serif; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px 0px 2px;"><span style="font-family: arial;"><span style="font-size: large;"><span class="s1" style="border: 0px; color: #454545; font-stretch: inherit; font-style: inherit; font-variant: inherit; font-weight: inherit; line-height: inherit; margin: 0px; padding: 0px; vertical-align: baseline;"><a href="https://www.ibdoc.net/" style="border: 0px; color: #2047af; font-stretch: inherit; font-style: inherit; font-variant: inherit; font-weight: inherit; line-height: inherit; margin: 0px; padding: 0px; text-decoration-line: none; vertical-align: baseline;"><span class="s2" style="border: 0px; color: #e4af0a; font-stretch: inherit; font-style: inherit; font-variant: inherit; font-weight: inherit; line-height: inherit; margin: 0px; padding: 0px; vertical-align: baseline;"><b>https://www.ibdoc.net/</b></span></a></span><span class="s1" style="border: 0px; color: #454545; font-stretch: inherit; font-style: inherit; font-variant: inherit; font-weight: inherit; line-height: inherit; margin: 0px; padding: 0px; vertical-align: baseline;"><b> </b></span></span></span></p><p class="p2" style="color: #454545; font-family: "Helvetica Neue"; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px; min-height: 14px;"><span style="font-size: large;"><br /></span></p><p class="p2" style="color: #454545; font-family: "Helvetica Neue"; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px; min-height: 14px;"><span style="font-size: large;"><br /></span></p><p class="p2" style="color: #454545; font-family: "Helvetica Neue"; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px; min-height: 14px;"><span style="font-size: large;"><br /></span></p><p class="p2" style="color: #454545; font-family: "Helvetica Neue"; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px; min-height: 14px;"><span style="font-size: large;"><br /></span></p><p class="p2" style="color: #454545; font-family: "Helvetica Neue"; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px; min-height: 14px;"><span style="font-size: large;"><br /></span></p><p class="p2" style="color: #454545; font-family: "Helvetica Neue"; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px; min-height: 14px;"><span style="font-size: large;"><br /></span></p><p class="p2" style="color: #454545; font-family: "Helvetica Neue"; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px; min-height: 14px;"><span style="font-size: large;"><br /></span></p><p class="p2" style="color: #454545; font-family: "Helvetica Neue"; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px; min-height: 14px;"><span style="font-size: large;"><br /></span></p><p class="p2" style="color: #454545; font-family: "Helvetica Neue"; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px; min-height: 14px;"><span style="font-size: large;"><br /></span></p><p class="p2" style="color: #454545; font-family: "Helvetica Neue"; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px; min-height: 14px;"><span style="font-size: large;"><br /></span></p><p class="p2" style="color: #454545; font-family: "Helvetica Neue"; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px; min-height: 14px;"><span style="font-size: large;"><br /></span></p><p class="p2" style="color: #454545; font-family: "Helvetica Neue"; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px; min-height: 14px;"><span style="font-size: large;"><br /></span></p><p class="p2" style="color: #454545; font-family: "Helvetica Neue"; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px; min-height: 14px;"><span style="font-size: large;"><br /></span></p><p class="p2" style="color: #454545; font-family: "Helvetica Neue"; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px; min-height: 14px;"><span style="font-size: large;"><br /></span></p><p class="p2" style="color: #454545; font-family: "Helvetica Neue"; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px; min-height: 14px;"><span style="font-size: large;"><br /></span></p><p class="p2" style="color: #454545; font-family: "Helvetica Neue"; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px; min-height: 14px;"><span style="font-size: large;"><br /></span></p><p class="p2" style="color: #454545; font-family: "Helvetica Neue"; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px; min-height: 14px;"><span style="font-size: large;"><br /></span></p><p class="p2" style="color: #454545; font-family: "Helvetica Neue"; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px; min-height: 14px;"><span style="font-size: large;"><br /></span></p><p><span style="font-size: large;"> </span></p>IBdoc and mehttp://www.blogger.com/profile/04644405174471346212noreply@blogger.com0tag:blogger.com,1999:blog-4877694666061362817.post-45964548291139613682022-03-31T10:42:00.003-07:002022-03-31T10:43:39.065-07:00<p><span style="font-size: medium;"> </span></p><p class="p2" style="color: #454545; font-family: "Helvetica Neue"; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px;"><span style="font-size: medium;">So here I go again on my quest for a better life with my Crohn’s disease . I have a consultation this evening with a registered dietician; the topic of the conversation will be the IBD AID diet.</span></p><p class="p1" style="color: #454545; font-family: "Helvetica Neue"; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px; min-height: 14px;"><span style="font-size: medium;"><br /></span></p><p class="p2" style="color: #454545; font-family: "Helvetica Neue"; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px;"><span style="font-size: medium;">The IBD-AID is founded on the principles of nutrition and the immune system, and updated with current research on the human microbiome. Research has shown that IBD patients have an imbalance of gut bacteria, which contributes to inflammation. This diet helps to restore balance between helpful and harmful bacteria while promoting good nutrition. The IBD-AID has three phases (listed elsewhere) to help patient’s progress to the ultimate goal of maintaining remission. There are four components to the IBD. Every day, incorporate these four fundamental components of the IBD-AID:</span></p><p class="p1" style="color: #454545; font-family: "Helvetica Neue"; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px; min-height: 14px;"><span style="font-size: medium;"><br /></span></p><p class="p2" style="color: #454545; font-family: "Helvetica Neue"; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px;"><span style="font-size: medium;">Probiotics</span></p><p class="p2" style="color: #454545; font-family: "Helvetica Neue"; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px;"><span style="font-size: medium;">These are fermented foods that have live bacteria within them, such as plain yogurt, kefir, kimchi, miso, tempeh, and fermented veggies like sauerkraut.</span></p><p class="p1" style="color: #454545; font-family: "Helvetica Neue"; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px; min-height: 14px;"><span style="font-size: medium;"><br /></span></p><p class="p2" style="color: #454545; font-family: "Helvetica Neue"; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px;"><span style="font-size: medium;">Prebiotics</span></p><p class="p2" style="color: #454545; font-family: "Helvetica Neue"; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px;"><span style="font-size: medium;">Foods that feed and maintain the good intestinal bacteria.</span></p><p class="p2" style="color: #454545; font-family: "Helvetica Neue"; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px;"><span style="font-size: medium;">IBD-AID emphasizes the importance of soluble fiber, which helps increase beneficial short chain fatty acids as well as making a gel-like substance to enhance stool consistency and slow gut motility.</span></p><p class="p1" style="color: #454545; font-family: "Helvetica Neue"; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px; min-height: 14px;"><span style="font-size: medium;"><br /></span></p><p class="p2" style="color: #454545; font-family: "Helvetica Neue"; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px;"><span style="font-size: medium;">This means decreased inflammation, more formed and regular bowel movements. Because we recognize the importance of soluble fiber (which is a prebiotic), we promote steel-cut oats on the diet.</span></p><p class="p1" style="color: #454545; font-family: "Helvetica Neue"; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px; min-height: 14px;"><span style="font-size: medium;"><br /></span></p><p class="p2" style="color: #454545; font-family: "Helvetica Neue"; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px;"><span style="font-size: medium;">There are challenges with this diet, first of all I have been on a low fibre low residue diet for the last 10 years, and flipping to a diet that’s rich in fibre does concern me, not necessarily about the effects of introducing fibre into my diet but the fact that this diet may be completely incompatible with my gut Microbiome, as with all new medications, and believe me food is a medication when it comes to Crohn’s disease, I prefer to go my own route when it comes to reading about side effects and potential failures, the reason being there is a whole body of evidence around the placebo effect and how this can have a detrimental effect on medical interventions,</span></p><p class="p1" style="color: #454545; font-family: "Helvetica Neue"; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px; min-height: 14px;"><span style="font-size: medium;"><br /></span></p><p class="p2" style="color: #454545; font-family: "Helvetica Neue"; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px;"><span style="font-size: medium;">My other concern about this diet is the lifestyle choice it will potentially bring, i.e. preparing everything from scratch, the social implications of eating said diet, and fundamentally as I have a disordered eating condition, that the diet may be too restrictive to stick to.</span></p><p class="p1" style="color: #454545; font-family: "Helvetica Neue"; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px; min-height: 14px;"><span style="font-size: medium;"><br /></span></p><p class="p2" style="color: #454545; font-family: "Helvetica Neue"; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px;"><span style="font-size: medium;">Luckily, I have a registered dietician that can guide me along my journey with the IBD AID diet; Im also interested in how I can incorporate IBDoc in to the diet plan.</span></p><p class="p1" style="color: #454545; font-family: "Helvetica Neue"; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px; min-height: 14px;"><span style="font-size: medium;"><br /></span></p><p class="p2" style="color: #454545; font-family: "Helvetica Neue"; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px;"><span style="font-size: medium;">I’ll let you know how I go on in next month’s blog</span></p><p class="p1" style="color: #454545; font-family: "Helvetica Neue"; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px; min-height: 14px;"><span style="font-size: medium;"><br /></span></p><p class="p2" style="color: #454545; font-family: "Helvetica Neue"; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px;"><span style="font-size: medium;">Just before I finish this months blog, it occurs to me from my own experience and especially when I speak to other Crohn’s patients how incredibly resilient and tenacious we are, faced with a multitude of serious operations and drug medications that come with black box warnings, we never give up, I have had Crohns disease for 30 years, and there is no way I’m ever giving up on researching the latest treatments, diets, and life style choices</span></p><p class="p1" style="color: #454545; font-family: "Helvetica Neue"; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px; min-height: 14px;"><span style="font-size: medium;"><br /></span></p><p class="p2" style="color: #454545; font-family: "Helvetica Neue"; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px;"><span style="font-size: medium;">I love connecting with people online that take the disease seriously and lead from the front regarding appointments treatments and research.<span class="Apple-converted-space"> </span></span></p><p class="p1" style="color: #454545; font-family: "Helvetica Neue"; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px; min-height: 14px;"><span style="font-size: medium;"><br /></span></p><p class="p2" style="color: #454545; font-family: "Helvetica Neue"; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px;"><span style="font-size: medium;">We can’t be passengers with this disease, so stay strong, never give up hope, keep learning researching, as there will be a cure in the near future for this most wicked of diseases.</span></p><p class="p1" style="color: #454545; font-family: "Helvetica Neue"; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px; min-height: 14px;"><span style="font-size: medium;"><br /></span></p><p class="p2" style="color: #454545; font-family: "Helvetica Neue"; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px;"><span style="font-size: medium;">If you have any questions about this blog please DM me.</span></p><p class="p1" style="color: #454545; font-family: "Helvetica Neue"; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px; min-height: 14px;"><span style="font-size: medium;"><br /></span></p><p class="p3" style="color: #e4af0a; font-family: "Helvetica Neue"; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px;"><a href="https://twitter.com/IbdocMe"><b><span style="font-size: medium;">https://twitter.com/IbdocMe</span></b></a></p><p class="p1" style="color: #454545; font-family: "Helvetica Neue"; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px; min-height: 14px;"><span style="font-size: medium;"><br /></span></p><p class="p3" style="color: #e4af0a; font-family: "Helvetica Neue"; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px;"><a href="https://ibdocandme1.blogspot.com/"><b><span style="font-size: medium;">https://ibdocandme1.blogspot.com/</span></b></a></p><p class="p1" style="color: #454545; font-family: "Helvetica Neue"; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px; min-height: 14px;"><span style="font-size: medium;"><br /></span></p><p class="p3" style="color: #e4af0a; font-family: "Helvetica Neue"; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px;"><a href="https://www.calprotectin.co.uk/"><b><span style="font-size: medium;">https://www.calprotectin.co.uk/</span></b></a></p><p class="p1" style="color: #454545; font-family: "Helvetica Neue"; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px; min-height: 14px;"><span style="font-size: medium;"><br /></span></p><p class="p3" style="color: #e4af0a; font-family: "Helvetica Neue"; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px;"><span style="font-size: medium;"><a href="https://www.ibdoc.net/"><b>https://www.ibdoc.net/</b></a><span class="s1" style="color: #454545;"><b> </b></span></span></p><p class="p1" style="color: #454545; font-family: "Helvetica Neue"; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px; min-height: 14px;"><span style="font-size: medium;"><br /></span></p><p class="p1" style="color: #454545; font-family: "Helvetica Neue"; font-size: 12px; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px; min-height: 14px;"><br /></p>IBdoc and mehttp://www.blogger.com/profile/04644405174471346212noreply@blogger.com0tag:blogger.com,1999:blog-4877694666061362817.post-69248413006053510352022-01-28T02:38:00.003-08:002022-01-28T02:38:42.113-08:00Lets talk about strictures<p><span style="font-size: medium;"><br /></span></p><p class="p1" style="color: #454545; font-family: "Helvetica Neue"; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px;"><span style="font-size: medium;">In my 30 years of dealing with Crohns disease, the dreaded stricture has been the culprit behind my two surgeries. In fact, one of the most common complications of Crohn’s disease is the development of an intestinal stricture.</span></p><p class="p1" style="color: #454545; font-family: "Helvetica Neue"; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px;"><span style="font-size: medium;"><br /></span></p><p class="p1" style="color: #454545; font-family: "Helvetica Neue"; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px;"><span style="font-size: medium;"> An intestinal stricture is a narrowing in the intestine that makes it difficult for food to pass through. At least one third of people with Crohn’s will develop a stricture within the first 10 years of diagnosis.</span></p><p class="p2" style="color: #454545; font-family: "Helvetica Neue"; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px; min-height: 14px;"><span style="font-size: medium;"><br /></span></p><p class="p1" style="color: #454545; font-family: "Helvetica Neue"; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px;"><span style="font-size: medium;">If you are newly diagnosed or want to know more about intestinal strictures, read on to learn about what causes strictures and how they can be treated.</span></p><p class="p2" style="color: #454545; font-family: "Helvetica Neue"; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px; min-height: 14px;"><span style="font-size: medium;"><br /></span></p><p class="p1" style="color: #454545; font-family: "Helvetica Neue"; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px;"><span style="font-size: medium;">The two main classifications for intestinal strictures are: inflammatory and fibrotic. Inflammatory strictures are caused by the inflammation of the digestive tract that accompanies a Crohn’s flare-up. Fibrotic strictures are the result of scar tissue building up in the bowel due to long periods of inflammation. It is possible for strictures to occur anywhere along the gastrointestinal tract but they are most often found in the last part of the small intestine and in the colon.</span></p><p class="p1" style="color: #454545; font-family: "Helvetica Neue"; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px;"><span style="font-size: medium;"><br /></span></p><p class="p1" style="color: #454545; font-family: "Helvetica Neue"; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px;"><span style="font-size: medium;"> I am currently presiding in the “fibrotic strictures” classification, I have been in this situation for over tens years, I do have narrowing in a section of my small bowel, however, due to a strict diet (which followers of my blog know I am tortured by on a daily basis) and biologic medication I have managed to swerve the surgeons knife.</span></p><p class="p1" style="color: #454545; font-family: "Helvetica Neue"; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px;"><span style="font-size: medium;"><br /></span></p><p class="p1" style="color: #454545; font-family: "Helvetica Neue"; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px;"><span style="font-size: medium;">The symptoms of an intestinal stricture can vary depending on the severity of the blockage. For mild to moderate strictures, symptoms include: tummy cramping, fatigue, bloating, tummy pain, severe pain, nausea and vomiting. In my case, I tick all the boxes, this is why it's so hard to treat Crohns as we display so many of the same symptoms.</span></p><p class="p1" style="color: #454545; font-family: "Helvetica Neue"; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px;"><span style="font-size: medium;"><br /></span></p><p class="p1" style="color: #454545; font-family: "Helvetica Neue"; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px;"><span style="font-size: medium;">Treatment for intestinal strictures varies from person to person, depending on the type, length, and location of the stricture. The two strictures I had were both around 12” long, and have occurred in the areas of my previous surgery, which is the last part of the small intestine and in the colon. In my case, the strictures were first treated with steroids, then l began the anti-TNF agents.</span></p><p class="p1" style="color: #454545; font-family: "Helvetica Neue"; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px;"><span style="font-size: medium;"><br /></span></p><p class="p1" style="color: #454545; font-family: "Helvetica Neue"; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px;"><span style="font-size: medium;">For intestinal strictures that don’t respond to medication, endoscopic treatment may help delay or avoid surgery. Unfortunately, the recurrence rate for intestinal strictures is quite high, hence us IBD people have periods of remission followed by relapse.</span></p><p class="p1" style="color: #454545; font-family: "Helvetica Neue"; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px;"><span style="font-size: medium;"><br /></span></p><p class="p1" style="color: #454545; font-family: "Helvetica Neue"; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px;"><span style="font-size: medium;">Both strictures I had didn’t respond to medication so I opted for a resection of the small bowel. I was offered a strictureplasty, which is a procedure where the damaged portion of the bowel is cut open and reshaped. However, after research I opted for the resection as strictureplasty in my case was putting off the inevitable surgery.</span></p><p class="p1" style="color: #454545; font-family: "Helvetica Neue"; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px;"><span style="font-size: medium;"><br /></span></p><p class="p1" style="color: #454545; font-family: "Helvetica Neue"; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px;"><span style="font-size: medium;">If you have an intestinal stricture, you may need to temporarily modify your diet to avoid blocking up the narrowed part of your bowel.The protocol in the UK is for bowel rest, your IBD team may offer you an option of Fortisip which is a Food for Special Medical Purposes for use under medical supervision. Fortisip Compact is a nutritionally complete, high energy ready to drink, milkshake style nutritional supplement.</span></p><p class="p2" style="color: #454545; font-family: "Helvetica Neue"; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px; min-height: 14px;"><span style="font-size: medium;"><br /></span></p><p class="p1" style="color: #454545; font-family: "Helvetica Neue"; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px;"><span style="font-size: medium;">Fortisips come in a few different flavours, I personally couldn’t tolerate the milkshakes. I also struggled mentally with the challenge of not eating solid food for eight weeks and having to drink ten bottles of milkshake daily. Of course this is just my personal experience, I have spoken to others who tolerate the milkshakes.</span></p><p class="p2" style="color: #454545; font-family: "Helvetica Neue"; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px; min-height: 14px;"><span style="font-size: medium;"><br /></span></p><p class="p1" style="color: #454545; font-family: "Helvetica Neue"; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px;"><span style="font-size: medium;">As Crohns patients we are faced with some difficult decisions, steroids, medications that come with black box warnings, major surgeries. I guess you could say, it makes us stronger, that it gives us a better perspective on life, which I would agree with, however, if there was ever a choice between having this disease and not having it, I’d go with the second option!</span></p><p class="p2" style="color: #454545; font-family: "Helvetica Neue"; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px; min-height: 14px;"><span style="font-size: medium;"><br /></span></p><p class="p1" style="color: #454545; font-family: "Helvetica Neue"; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px;"><span style="font-size: medium;">If you have any questions about this blog please DM me.</span></p><p class="p1" style="color: #454545; font-family: "Helvetica Neue"; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px;"><span style="font-size: medium;"><br /></span></p><p class="p3" style="background-color: white; 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color: #454545; font-stretch: inherit; font-style: inherit; font-variant: inherit; font-weight: inherit; line-height: inherit; margin: 0px; padding: 0px; vertical-align: baseline;"><span style="font-family: arial;"><a href="https://www.calprotectin.co.uk/" style="border: 0px; color: #2047af; font-stretch: inherit; font-style: inherit; font-variant: inherit; font-weight: inherit; line-height: inherit; margin: 0px; padding: 0px; text-decoration-line: none; vertical-align: baseline;"><span class="s2" style="border: 0px; color: #e4af0a; font-stretch: inherit; font-style: inherit; font-variant: inherit; font-weight: inherit; line-height: inherit; margin: 0px; padding: 0px; vertical-align: baseline;"><b><span style="font-size: medium;">https://www.calprotectin.co.uk/</span></b></span></a></span></span></p><p class="p2" style="background-color: white; color: #454545; font-family: Arial, Tahoma, Helvetica, FreeSans, sans-serif; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; 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font-style: inherit; font-variant: inherit; font-weight: inherit; line-height: inherit; margin: 0px; padding: 0px; vertical-align: baseline;"><b>https://www.ibdoc.net/</b></span></a></span><span class="s1" style="border: 0px; color: #454545; font-stretch: inherit; font-style: inherit; font-variant: inherit; font-weight: inherit; line-height: inherit; margin: 0px; padding: 0px; vertical-align: baseline;"><b> </b></span></span></span></p><p class="p2" style="color: #454545; font-family: "Helvetica Neue"; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px; min-height: 14px;"><span style="font-size: medium;"><br /></span></p><p class="p2" style="color: #454545; font-family: "Helvetica Neue"; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px; min-height: 14px;"><span style="font-size: medium;"><br /></span></p><p class="p2" style="color: #454545; font-family: "Helvetica Neue"; font-size: 12px; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px; min-height: 14px;"><br /></p>IBdoc and mehttp://www.blogger.com/profile/04644405174471346212noreply@blogger.com0tag:blogger.com,1999:blog-4877694666061362817.post-86104881070432441492021-11-29T06:39:00.001-08:002021-11-29T06:39:23.686-08:00Crohns disaster part 3, the plan that isn't a plan <p class="p1" style="color: #454545; font-family: "Helvetica Neue"; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px;"><span style="font-size: medium;">I’ve often pondered the term ‘Warriors” when used in the context of IBD, there’s loads of Facebook groups with titles like IBD warriors support and awareness, Stelara Warriors, Entyvio warriors, you can even buy branded IBD warrior gifts!</span></p><p class="p2" style="color: #454545; font-family: "Helvetica Neue"; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px; min-height: 14px;"><span style="font-size: medium;"><br /></span></p><p class="p1" style="color: #454545; font-family: "Helvetica Neue"; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px;"><span style="font-size: medium;">If I’m honest, I have been a little glib when it comes to declaring I am an IBD warrior, on reflection that’s because I’ve not had a serious flare for the last ten years, as I have been managing my CD with a combination of Meds and diet.<span class="Apple-converted-space"> </span></span></p><p class="p2" style="color: #454545; font-family: "Helvetica Neue"; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px; min-height: 14px;"><span style="font-size: medium;"><br /></span></p><p class="p1" style="color: #454545; font-family: "Helvetica Neue"; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px;"><span style="font-size: medium;">However, the warrior term becomes center stage when faced with the medication options. We IBD veterans have to battle through it, focusing on the end game and being ready for collateral damage along the way.<span class="Apple-converted-space"> </span></span></p><p class="p2" style="color: #454545; font-family: "Helvetica Neue"; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px; min-height: 14px;"><span style="font-size: medium;"><br /></span></p><p class="p1" style="color: #454545; font-family: "Helvetica Neue"; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px;"><span style="font-size: medium;">After a flare up in August this year, my IBD Nurse got back to me and prescribed me a course of Entocort. Within two weeks I had the flare under control, and was feeling back to normal; I do have to caveat the “back to normal” with actually feeling like rubbish all day, but I’ll take that over being in pain!</span></p><p class="p2" style="color: #454545; font-family: "Helvetica Neue"; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px; min-height: 14px;"><span style="font-size: medium;"><br /></span></p><p class="p1" style="color: #454545; font-family: "Helvetica Neue"; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px;"><span style="font-size: medium;">The challenge comes when faced with the decisions we are forced to make, for me this comes with the plan from my consultant.</span></p><p class="p2" style="color: #454545; font-family: "Helvetica Neue"; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px; min-height: 14px;"><span style="font-size: medium;"><br /></span></p><p class="p1" style="color: #454545; font-family: "Helvetica Neue"; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px;"><span style="font-size: medium;">Here’s the plan…. it’s not a very cunning plan, and in fact it’s the same plan from when I was first diagnosed in 1992. It’s basically, Steroids to get the disease under control and then move on to biologic for long-term control of the disease.</span></p><p class="p2" style="color: #454545; font-family: "Helvetica Neue"; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px; min-height: 14px;"><span style="font-size: medium;"><br /></span></p><p class="p1" style="color: #454545; font-family: "Helvetica Neue"; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px;"><span style="font-size: medium;">Unfortunately, this plan is flawed, first of all when I reduce from 9 mg of Entocort daily to 6 mg, I can feel all the symptoms coming back: nausea, bloating, pain, and increase BMs. Secondly, the biologic of choice is Stelara which can take up to 12 weeks to begin working (if it works at all). This leaves me with at least eight weeks with neither the steroids nor the biologic offering me any protection. This makes me question the “plan”</span></p><p class="p2" style="color: #454545; font-family: "Helvetica Neue"; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px; min-height: 14px;"><span style="font-size: medium;"><br /></span></p><p class="p1" style="color: #454545; font-family: "Helvetica Neue"; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px;"><span style="font-size: medium;">The outcome of the plan, if I get on board with it, could lead me to being admitted to hospital, which considering the current status of COVID, I’d prefer not to be anywhere near a hospital. The other side of the coin is that I continue on steroids until the Stelara begins to work, the challenge is being immune suppressed with COVID still present.</span></p><p class="p2" style="color: #454545; font-family: "Helvetica Neue"; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px; min-height: 14px;"><span style="font-size: medium;"><br /></span></p><p class="p1" style="color: #454545; font-family: "Helvetica Neue"; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px;"><span style="font-size: medium;">My decision would be to continue with steroids until this medication kicks in, you have to take your chances with the long term effects of the steroids. My concern is right here, right now, and the reality of having that conversation in Covid times when I haven’t seen my consultant for almost 2 years seems unlikely.<span class="Apple-converted-space"> </span></span></p><p class="p2" style="color: #454545; font-family: "Helvetica Neue"; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px; min-height: 14px;"><span style="font-size: medium;"><br /></span></p><p class="p1" style="color: #454545; font-family: "Helvetica Neue"; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px;"><span style="font-size: medium;">I find it difficult to believe that there isn’t a better plan to manage the disease in between medications; it appears nothing has changed in the 30 years since my diagnosis. It’s ludicrous that the NHS would spend £20K a year per patient on as an example, Stelara, but not consider a transition plan, from one medication to another.</span></p><p class="p2" style="color: #454545; font-family: "Helvetica Neue"; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px; min-height: 14px;"><span style="font-size: medium;"><br /></span></p><p class="p1" style="color: #454545; font-family: "Helvetica Neue"; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px;"><span style="font-size: medium;">As my disease is now actually older than my consultant (for reference he is a fantastic consultant) I will be pursuing the route that for now keeps me safely away from the hospital ward.</span></p><p class="p2" style="color: #454545; font-family: "Helvetica Neue"; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px; min-height: 14px;"><span style="font-size: medium;"><br /></span></p><p class="p1" style="color: #454545; font-family: "Helvetica Neue"; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px;"><span style="font-size: medium;">I do feel fortunate as I have access to IBDoc, which gives me the tools to report the level of inflammation directly to my consultant, for readers new to my blog, Calprotectin is a protein biomarker that is present in the faeces when intestinal inflammation occurs. Faecal calprotectin testing is helping to improve patient care. It prevents the need for unnecessary endoscopy procedures.</span></p><p class="p2" style="color: #454545; font-family: "Helvetica Neue"; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px; min-height: 14px;"><span style="font-size: medium;"><br /></span></p><p class="p1" style="color: #454545; font-family: "Helvetica Neue"; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px;"><span style="font-size: medium;">Please get in touch if you’re like me and are in between medications, I’d love to hear your stories.</span></p><p class="p2" style="color: #454545; font-family: "Helvetica Neue"; font-size: 12px; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px; min-height: 14px;"><br /></p><p class="p3" style="background-color: white; color: #e4af0a; font-family: Arial, Tahoma, Helvetica, FreeSans, sans-serif; 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color: #454545; font-family: Arial, Tahoma, Helvetica, FreeSans, sans-serif; font-size: 12px; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px; min-height: 14px;"><span style="font-family: arial;"><br /></span></p><p class="p3" style="background-color: white; color: #e4af0a; font-family: Arial, Tahoma, Helvetica, FreeSans, sans-serif; font-size: 14px; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px 0px 2px;"><span style="font-family: arial;"><span class="s1" style="border: 0px; color: #454545; font-size: inherit; font-stretch: inherit; font-style: inherit; font-variant: inherit; font-weight: inherit; line-height: inherit; margin: 0px; padding: 0px; vertical-align: baseline;"><a href="https://ibdocandme1.blogspot.com/" style="border: 0px; color: #2047af; font-size: inherit; font-stretch: inherit; font-style: inherit; font-variant: inherit; font-weight: inherit; line-height: inherit; margin: 0px; padding: 0px; text-decoration-line: none; vertical-align: baseline;"><span class="s2" style="border: 0px; color: #e4af0a; font-size: 12pt; font-stretch: inherit; font-style: inherit; font-variant: inherit; font-weight: inherit; line-height: inherit; margin: 0px; padding: 0px; vertical-align: baseline;"><b>https://ibdocandme1.blogspot.com/</b></span></a></span></span></p><p class="p2" style="background-color: white; color: #454545; font-family: Arial, Tahoma, Helvetica, FreeSans, sans-serif; font-size: 12px; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px; min-height: 14px;"><span style="font-family: arial;"><br /></span></p><p class="p3" style="background-color: white; color: #e4af0a; font-family: Arial, Tahoma, Helvetica, FreeSans, sans-serif; font-size: 14px; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px 0px 2px;"><span class="s1" style="border: 0px; color: #454545; font-size: inherit; font-stretch: inherit; font-style: inherit; font-variant: inherit; font-weight: inherit; line-height: inherit; margin: 0px; padding: 0px; vertical-align: baseline;"><span style="font-family: arial;"><a href="https://www.calprotectin.co.uk/" style="border: 0px; color: #2047af; font-size: inherit; font-stretch: inherit; font-style: inherit; font-variant: inherit; font-weight: inherit; line-height: inherit; margin: 0px; padding: 0px; text-decoration-line: none; vertical-align: baseline;"><span class="s2" style="border: 0px; color: #e4af0a; font-size: 12pt; font-stretch: inherit; font-style: inherit; font-variant: inherit; font-weight: inherit; line-height: inherit; margin: 0px; padding: 0px; vertical-align: baseline;"><b>https://www.calprotectin.co.uk/</b></span></a></span></span></p><p class="p2" style="background-color: white; color: #454545; font-family: Arial, Tahoma, Helvetica, FreeSans, sans-serif; font-size: 12px; font-stretch: normal; font-variant-east-asian: normal; 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font-size: 12pt; font-stretch: inherit; font-style: inherit; font-variant: inherit; font-weight: inherit; line-height: inherit; margin: 0px; padding: 0px; vertical-align: baseline;"><b>https://www.ibdoc.net/</b></span></a></span><span class="s1" style="border: 0px; color: #454545; font-size: 12pt; font-stretch: inherit; font-style: inherit; font-variant: inherit; font-weight: inherit; line-height: inherit; margin: 0px; padding: 0px; vertical-align: baseline;"><b> </b></span></span></p><p class="p2" style="color: #454545; font-family: "Helvetica Neue"; font-size: 12px; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px; min-height: 14px;"><br /></p><p class="p2" style="color: #454545; font-family: "Helvetica Neue"; font-size: 12px; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px; min-height: 14px;"><br /></p><p class="p2" style="color: #454545; font-family: "Helvetica Neue"; font-size: 12px; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px; min-height: 14px;"><br /></p><p> </p>IBdoc and mehttp://www.blogger.com/profile/04644405174471346212noreply@blogger.com0tag:blogger.com,1999:blog-4877694666061362817.post-79071981304096874492021-09-30T04:07:00.000-07:002021-09-30T04:07:41.096-07:00 Crohns disaster part 2, “Russian roulette anyone?<p><br /></p><p class="p2" style="background-color: white; color: #454545; font-size: 12px; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px; min-height: 14px;"><span style="font-family: arial;"><br /></span></p><p class="p1" style="background-color: white; color: #454545; font-size: 12px; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px;"><span style="border: 0px; color: inherit; font-size: 12pt; font-stretch: inherit; font-style: inherit; font-variant: inherit; font-weight: inherit; line-height: inherit; margin: 0px; padding: 0px; vertical-align: baseline;"><span style="font-family: arial;">This is part two of my Crohns disaster blog, as I write I’m feeling the familiar side effect of entocort, I have developed oral thrush (nice) my tongue feels like I have been rubbing it on coarse sandpaper, which in turn means eating anything is a form of gastronomic torture, along with the cracks either side of my mouth, the head aches, nausea, and low mood, I think I may have a full house of entocort side effects, Bingo!!</span></span></p><p class="p2" style="background-color: white; color: #454545; font-size: 12px; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px; min-height: 14px;"><span style="font-family: arial;"><br /></span></p><p class="p1" style="background-color: white; color: #454545; font-size: 12px; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px;"><span style="border: 0px; color: inherit; font-size: 12pt; font-stretch: inherit; font-style: inherit; font-variant: inherit; font-weight: inherit; line-height: inherit; margin: 0px; padding: 0px; vertical-align: baseline;"><span style="font-family: arial;">I had forgotten about my dysfunctional relationship with steroids, it’s not dissimilar to Russian roulette, if we see Crohn’s as the loaded gun, and steroids as the barrel that’s furiously spinning, sooner or later the game will be up.BI know the steroids offer me protection from a flare up, which in turn means I can vary my diet, I can eat out, I can have a little spontaneity in my life rather than making a flask of food to be taken with me everywhere I go.</span></span></p><p class="p2" style="background-color: white; color: #454545; font-size: 12px; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px; min-height: 14px;"><span style="font-family: arial;"><br /></span></p><p class="p1" style="background-color: white; color: #454545; font-size: 12px; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px;"><span style="border: 0px; color: inherit; font-size: 12pt; font-stretch: inherit; font-style: inherit; font-variant: inherit; font-weight: inherit; line-height: inherit; margin: 0px; padding: 0px; vertical-align: baseline;"><span style="font-family: arial;">The steroids offer me a false dawn - they tell me that I can have a ‘normal life, I can eat out when ever and where ever I want, they tell me that my energy levels will continue, at this pace, they comfort me with the promise that, I will always feel this good. However, that game of Russian roulette begins in earnest, reducing the steroids is loading the gun, the side effects kicking in is me spinning the gun barrel. This is where I put the gun down and come to my senses. I have just enough will power to throw myself back on to my rigid diet, and accept that fact I was only ever on day visits to the land of the normal people and that I need to get my act together and treat this disease as it is and always has been; a serious, life long chronic illness.</span></span></p><p class="p2" style="background-color: white; color: #454545; font-size: 12px; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px; min-height: 14px;"><span style="font-family: arial;"><br /></span></p><p class="p1" style="background-color: white; color: #454545; font-size: 12px; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px;"><span style="border: 0px; color: inherit; font-size: 12pt; font-stretch: inherit; font-style: inherit; font-variant: inherit; font-weight: inherit; line-height: inherit; margin: 0px; padding: 0px; vertical-align: baseline;"><span style="font-family: arial;">So, enough with the crazy analogies - I do have some quite interesting news. It all started with a phone call to my landline, I don’t know about you, but these days when my landline rings, it’s usually some poor soul trying to either tell me I was in a car accident, sell me green energy, or an automated system telling me my Amazon membership is up and I should handover all my passwords. For your reference, please don’t handover any of your Amazon details.</span></span></p><p class="p2" style="background-color: white; color: #454545; font-size: 12px; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px; min-height: 14px;"><span style="font-family: arial;"><br /></span></p><p class="p1" style="background-color: white; color: #454545; font-size: 12px; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px;"><span style="font-family: arial;"><span style="border: 0px; color: inherit; font-size: 12pt; font-stretch: inherit; font-style: inherit; font-variant: inherit; font-weight: inherit; line-height: inherit; margin: 0px; padding: 0px; vertical-align: baseline;">So the phone rings, I answer it with my usual indifference, however, this call was different, and this time it was my consultant. MY ACTUAL CONSULTANT!! I had to move fast from my deeply annoyed state, to my professional Crohn’s patient self, which I managed to do quite effortlessly.</span><span class="Apple-converted-space" style="border: 0px; color: inherit; font-size: 12pt; font-stretch: inherit; font-style: inherit; font-variant: inherit; font-weight: inherit; line-height: inherit; margin: 0px; padding: 0px; vertical-align: baseline;"> </span></span></p><p class="p2" style="background-color: white; color: #454545; font-size: 12px; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px; min-height: 14px;"><span style="font-family: arial;"><br /></span></p><p class="p1" style="background-color: white; color: #454545; font-size: 12px; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px;"><span style="font-family: arial;"><span style="border: 0px; color: inherit; font-size: 12pt; font-stretch: inherit; font-style: inherit; font-variant: inherit; font-weight: inherit; line-height: inherit; margin: 0px; padding: 0px; vertical-align: baseline;">I know what you’re thinking; your consultant rang you on your landline? What kind of trickery is this? An NHS consultant using modernish technology to speak to his patients? Well I can assure you that’s exactly what happened, in fact, not only did my consultant call me on my landline, he delivered me the plan for moving from Vedolizumab to Sterala, and I don’t have to wait three months for the washout period, which would have resulted in a definite flare up, I can begin the loading doses of sterala in the coming weeks.</span><span class="Apple-converted-space" style="border: 0px; color: inherit; font-size: 12pt; font-stretch: inherit; font-style: inherit; font-variant: inherit; font-weight: inherit; line-height: inherit; margin: 0px; padding: 0px; vertical-align: baseline;"> </span></span></p><p class="p1" style="background-color: white; color: #454545; font-size: 12px; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px;"><span style="font-family: arial;"><span style="border: 0px; color: inherit; font-size: 12pt; font-stretch: inherit; font-style: inherit; font-variant: inherit; font-weight: inherit; line-height: inherit; margin: 0px; padding: 0px; vertical-align: baseline;">I was so flabbergasted by this communication, I wanted to tell everybody in the house of this exceptional conversation, unfortunately, there wasn’t anybody home, I did try and tell the UPS delivery driver who rapped on my door just as I realized I was the only one home, but he was in a UPS hurry! His loss….</span><span class="Apple-converted-space" style="border: 0px; color: inherit; font-size: 12pt; font-stretch: inherit; font-style: inherit; font-variant: inherit; font-weight: inherit; line-height: inherit; margin: 0px; padding: 0px; vertical-align: baseline;"> </span></span></p><p class="p2" style="background-color: white; color: #454545; font-size: 12px; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px; min-height: 14px;"><span style="font-family: arial;"><br /></span></p><p class="p1" style="background-color: white; color: #454545; font-size: 12px; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px;"><span style="border: 0px; color: inherit; font-size: 12pt; font-stretch: inherit; font-style: inherit; font-variant: inherit; font-weight: inherit; line-height: inherit; margin: 0px; padding: 0px; vertical-align: baseline;"><span style="font-family: arial;">So, once again, I find myself on the Crohns carrousel of steroids, loading doses, blood tests, and landline conversations!!</span></span></p><p class="p2" style="background-color: white; color: #454545; font-size: 12px; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px; min-height: 14px;"><span style="font-family: arial;"><br /></span></p><p class="p3" style="background-color: white; color: #e4af0a; font-size: 14px; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px 0px 2px;"><span style="font-family: arial;"><span class="s1" style="border: 0px; color: #454545; font-size: 12pt; font-stretch: inherit; font-style: inherit; font-variant: inherit; font-weight: inherit; line-height: inherit; margin: 0px; padding: 0px; vertical-align: baseline;"><b>Follow me Twitter: </b></span><span class="s1" style="border: 0px; color: #454545; font-size: inherit; font-stretch: inherit; font-style: inherit; font-variant: inherit; font-weight: inherit; line-height: inherit; margin: 0px; padding: 0px; vertical-align: baseline;"><a href="https://twitter.com/IbdocMe" style="border: 0px; 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color: inherit; font-size: 12pt; font-stretch: inherit; font-style: inherit; font-variant: inherit; font-weight: inherit; line-height: inherit; margin: 0px; padding: 0px; vertical-align: baseline;"></span><span class="Apple-tab-span" style="border: 0px; color: inherit; font-size: 12pt; font-stretch: inherit; font-style: inherit; font-variant: inherit; font-weight: inherit; line-height: inherit; margin: 0px; padding: 0px; vertical-align: baseline;"></span><span class="Apple-tab-span" style="border: 0px; color: inherit; font-size: 12pt; font-stretch: inherit; font-style: inherit; font-variant: inherit; font-weight: inherit; line-height: inherit; margin: 0px; padding: 0px; vertical-align: baseline;"></span><span class="Apple-converted-space" style="border: 0px; color: inherit; font-size: 12pt; font-stretch: inherit; font-style: inherit; font-variant: inherit; font-weight: inherit; line-height: inherit; margin: 0px; padding: 0px; vertical-align: baseline;"> </span></b><a href="https://www.calprotectin.co.uk/" style="border: 0px; 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color: #454545; font-size: 12pt; font-stretch: inherit; font-style: inherit; font-variant: inherit; font-weight: inherit; line-height: inherit; margin: 0px; padding: 0px; vertical-align: baseline;"><b> </b></span></span></p>IBdoc and mehttp://www.blogger.com/profile/04644405174471346212noreply@blogger.com0tag:blogger.com,1999:blog-4877694666061362817.post-63680738297611342412021-08-24T09:45:00.002-07:002021-08-24T09:46:26.447-07:00Crohns disaster!<p><br /></p><p class="p2" style="color: #454545; font-family: "Helvetica Neue"; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px; min-height: 14px;"><span style="font-size: large;"><br /></span></p><p class="p3" style="color: #454545; font-family: "Helvetica Neue"; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px;"><span style="font-size: large;">Oh no! What an absolute disaster, after 10 years of some sort of remission, I am having a full on Crohns disease flare-up, stomach pains, fatigue, nausea, bleeding… If you know you know.</span></p><p class="p2" style="color: #454545; font-family: "Helvetica Neue"; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px; min-height: 14px;"><span style="font-size: large;"><br /></span></p><p class="p3" style="color: #454545; font-family: "Helvetica Neue"; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px;"><span style="font-size: large;">I was going to start this months blog by discussing how well I’ve felt over the last 18 month, what does that mean to me in Crohns disease terms? Well, zero visits to my consultant, zero conversations with my IBD Nurse, less fatigue and no brain fog! Like actually zero brain fog! And finally, Zero trawling through Facebook forums, looking for answers I know I won’t find.</span></p><p class="p2" style="color: #454545; font-family: "Helvetica Neue"; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px; min-height: 14px;"><span style="font-size: large;"><br /></span></p><p class="p3" style="color: #454545; font-family: "Helvetica Neue"; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px;"><span style="font-size: large;">However, if I’m being honest, although I felt the best I’ve felt in years, I had noticed my Calprotectin levels creeping up, “How did you know your Calprotectin</span></p><p class="p3" style="color: #454545; font-family: "Helvetica Neue"; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px;"><span style="font-size: large;">Levels were creeping up if you haven’t seen your consultant for over 18 months”, I hear you shout. The answer is simple; I use a home Calprotectin kit called IBDoc. I’ve written extensively about IBDoc and the life changing impact it’s had on the management of my disease in previous blogs.<span class="Apple-converted-space"> </span></span></p><p class="p2" style="color: #454545; font-family: "Helvetica Neue"; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px; min-height: 14px;"><span style="font-size: large;"><br /></span></p><p class="p3" style="color: #454545; font-family: "Helvetica Neue"; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px;"><span style="font-size: large;">This does prompt to the question I think all of us IBDers ask ourselves, “why do I feel so well, if I have no symptoms” Of course, I have no idea why this is the case, I’ve had Calprotectin levels around 70 and felt absolutely awful day-to-day week to week, yet here I am, feeling fine, but with much increased inflammation levels. There’s loads of research around mindfulness, and meditation directed specifically at the gut to reduce symptoms I’ve also been reading lots of papers on CD disease and PTSD, but that’s for another blog.</span></p><p class="p2" style="color: #454545; font-family: "Helvetica Neue"; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px; min-height: 14px;"><span style="font-size: large;"><br /></span></p><p class="p3" style="color: #454545; font-family: "Helvetica Neue"; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px;"><span style="font-size: large;">Back to the flare-up, there are mitigating circumstances around this flare up, first up, and it’s always lurking in my blogs, its my inability to stay on my low residue low fiber diet, I’ve gone from strict compliance to around 70% compliance, which clearly isn’t good enough. Secondly, I believe the immune suppressants I’m on (Vedo) is no longer as affective as it was, these two factors combined resulted in a Calprotectin result of 900, increased urgency, pain in my tummy, that was followed by a temperature of around 39° for a day.</span></p><p class="p2" style="color: #454545; font-family: "Helvetica Neue"; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px; min-height: 14px;"><span style="font-size: large;"><br /></span></p><p class="p3" style="color: #454545; font-family: "Helvetica Neue"; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px;"><span style="font-size: large;">I knew it was time to take action, so now I’m back on the trail of the Lonesome Crohns disease person, ringing my consultant secretary desperate for an appointment, chasing IBD nurses for answers, chasing prescriptions from my GP. I’d honestly forgot how exhausting it was being your own PA when you have a chronic illness</span></p><p class="p2" style="color: #454545; font-family: "Helvetica Neue"; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px; min-height: 14px;"><span style="font-size: large;"><br /></span></p><p class="p3" style="color: #454545; font-family: "Helvetica Neue"; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px;"><span style="font-size: large;">The positives, if there are ever any positives around a flare-up, is that I’m able to test my Calprotectin levels via IBDoc this is a perfect example of how this technology works fantastically well for me. My last call protecting result was 925, after two weeks of being strictly on diet and the introduction of Entocort, my levels are down to 500, I’ll give it another couple of weeks and see where my<span class="Apple-converted-space"> </span></span></p><p class="p3" style="color: #454545; font-family: "Helvetica Neue"; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px;"><span style="font-size: large;">Calprotectin levels are again.</span></p><p class="p2" style="color: #454545; font-family: "Helvetica Neue"; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px; min-height: 14px;"><span style="font-size: large;"><br /></span></p><p class="p3" style="color: #454545; font-family: "Helvetica Neue"; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px;"><span style="font-size: large;">You’d think I would have learnt my lesson by now, having CD for over 30 years, two resections and countless amounts of medications, The thing is, I think I’m smarter than my disease, I think I can out run it with diet and drugs, even after 10 years of relative remission, it’s caught up with me, it was always going to catch up on me at some point. 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font-stretch: inherit; font-style: inherit; font-variant: inherit; font-weight: inherit; line-height: inherit; margin: 0px; padding: 0px; vertical-align: baseline;"><a data-auth="NotApplicable" data-linkindex="7" href="https://www.ibdoc.net/" rel="noopener noreferrer" style="border: 0px; font-family: inherit; font-stretch: inherit; font-style: inherit; font-variant: inherit; font-weight: inherit; line-height: inherit; margin: 0px; padding: 0px; vertical-align: baseline;" target="_blank"><span class="x_s2" color="inherit" style="border: 0px; font-family: inherit; font-stretch: inherit; font-style: inherit; font-variant: inherit; font-weight: inherit; line-height: inherit; margin: 0px; padding: 0px; vertical-align: baseline;"><span face="Arial, sans-serif" style="border: 0px; color: #e4af0a; font-stretch: inherit; font-style: inherit; font-variant: inherit; font-weight: inherit; line-height: inherit; margin: 0px; padding: 0px; vertical-align: baseline;">https://www.ibdoc.net/</span></span></a></span><span face="Arial, sans-serif" style="border: 0px; font-stretch: inherit; font-style: inherit; font-variant: inherit; font-weight: inherit; line-height: inherit; margin: 0px; padding: 0px; vertical-align: baseline;"> </span></span></p><p></p>IBdoc and mehttp://www.blogger.com/profile/04644405174471346212noreply@blogger.com2tag:blogger.com,1999:blog-4877694666061362817.post-30890365905275347722021-06-29T07:51:00.000-07:002021-06-29T07:51:07.907-07:00IBD = Guilt <p><br /></p><p class="x_MsoNormal" style="background-color: white; font-family: "Times New Roman", serif; font-size: 12pt; margin: 0cm 0cm 0.0001pt;"><span style="border: 0px; font-family: Arial, sans-serif; font-size: inherit; font-stretch: inherit; font-style: inherit; font-variant: inherit; font-weight: inherit; line-height: inherit; margin: 0px; padding: 0px; vertical-align: baseline;">On a scale of 1 to 10, 10 being the worst, how guilty does having this dreadful disease make you feel? Over the years I think I’ve definitely been a solid eight when it comes to feeling guilty about how IBD has affected me and my family. Along with the ensemble of symptoms, weight loss, diarrhoea, nausea, crippling stomach pain, fatigue, mouth ulcers, anaemia, joint pain, inflammation of the eyes, and then there’s the side effects of the heavy medication, joint pain, respiratory problems, numbness, tingling, liver problems, the list sometimes feel endless. </span></p><p class="x_MsoNormal" style="background-color: white; font-family: "Times New Roman", serif; font-size: 12pt; margin: 0cm 0cm 0.0001pt;"><span style="border: 0px; font-family: Arial, sans-serif; font-size: inherit; font-stretch: inherit; font-style: inherit; font-variant: inherit; font-weight: inherit; line-height: inherit; margin: 0px; padding: 0px; vertical-align: baseline;"> </span></p><p class="x_MsoNormal" style="background-color: white; font-family: "Times New Roman", serif; font-size: 12pt; margin: 0cm 0cm 0.0001pt;"><span style="border: 0px; font-family: Arial, sans-serif; font-size: inherit; font-stretch: inherit; font-style: inherit; font-variant: inherit; font-weight: inherit; line-height: inherit; margin: 0px; padding: 0px; vertical-align: baseline;">So, you would think with all the hideous symptoms of IBD, and the punishing side effects of the medication, then throw in the countless hours spent being prodded and poked, the regular ? repeated MRI’s</span><span style="border: 0px; font-family: Arial, sans-serif; font-size: inherit; font-stretch: inherit; font-style: inherit; font-variant: inherit; font-weight: inherit; line-height: inherit; margin: 0px; padding: 0px; vertical-align: baseline;"> colonoscopies…. Let’s face it, the list is endless, then why on earth would I then feel guilty about having this disease? </span></p><p class="x_MsoNormal" style="background-color: white; font-family: "Times New Roman", serif; font-size: 12pt; margin: 0cm 0cm 0.0001pt;"><span style="border: 0px; font-family: Arial, sans-serif; font-size: inherit; font-stretch: inherit; font-style: inherit; font-variant: inherit; font-weight: inherit; line-height: inherit; margin: 0px; padding: 0px; vertical-align: baseline;"> </span></p><p class="x_MsoNormal" style="background-color: white; font-family: "Times New Roman", serif; font-size: 12pt; margin: 0cm 0cm 0.0001pt;"><span style="border: 0px; font-family: Arial, sans-serif; font-size: inherit; font-stretch: inherit; font-style: inherit; font-variant: inherit; font-weight: inherit; line-height: inherit; margin: 0px; padding: 0px; vertical-align: baseline;">I mean, it’s not like I asked for the disease when they were handing out who got the chronic illness genes and who didn’t. I didn’t sign up for a life time of hospital appointments or the overwhelming feelings of anxiety waiting for my latest test results, but the guilt will not leave me in peace. </span></p><p class="x_MsoNormal" style="background-color: white; font-family: "Times New Roman", serif; font-size: 12pt; margin: 0cm 0cm 0.0001pt;"><span style="border: 0px; font-family: Arial, sans-serif; font-size: inherit; font-stretch: inherit; font-style: inherit; font-variant: inherit; font-weight: inherit; line-height: inherit; margin: 0px; padding: 0px; vertical-align: baseline;"> </span></p><p class="x_MsoNormal" style="background-color: white; font-family: "Times New Roman", serif; font-size: 12pt; margin: 0cm 0cm 0.0001pt;"><span style="border: 0px; font-family: Arial, sans-serif; font-size: inherit; font-stretch: inherit; font-style: inherit; font-variant: inherit; font-weight: inherit; line-height: inherit; margin: 0px; padding: 0px; vertical-align: baseline;">The Oxford English dictionary defines guilt as, ‘</span><span style="border: 0px; font-family: Arial, sans-serif; font-size: inherit; font-stretch: inherit; font-style: inherit; font-variant: inherit; font-weight: inherit; line-height: inherit; margin: 0px; padding: 0px; vertical-align: baseline;">a </span><a data-auth="NotApplicable" data-linkindex="0" href="https://dictionary.cambridge.org/dictionary/english/feeling" rel="noopener noreferrer" style="border: 0px; font: inherit; margin: 0px; padding: 0px; vertical-align: baseline;" target="_blank" title="feeling"><span style="border: 0px; color: black; font-family: Arial, sans-serif; font-size: inherit; font-stretch: inherit; font-style: inherit; font-variant: inherit; font-weight: inherit; line-height: inherit; margin: 0px; padding: 0px; vertical-align: baseline;">feeling</span></a><span style="border: 0px; font-family: Arial, sans-serif; font-size: inherit; font-stretch: inherit; font-style: inherit; font-variant: inherit; font-weight: inherit; line-height: inherit; margin: 0px; padding: 0px; vertical-align: baseline;"> of </span><a data-auth="NotApplicable" data-linkindex="1" href="https://dictionary.cambridge.org/dictionary/english/worry" rel="noopener noreferrer" style="border: 0px; font: inherit; margin: 0px; padding: 0px; vertical-align: baseline;" target="_blank" title="worry"><span style="border: 0px; color: black; font-family: Arial, sans-serif; font-size: inherit; font-stretch: inherit; font-style: inherit; font-variant: inherit; font-weight: inherit; line-height: inherit; margin: 0px; padding: 0px; vertical-align: baseline;">worry</span></a><span style="border: 0px; font-family: Arial, sans-serif; font-size: inherit; font-stretch: inherit; font-style: inherit; font-variant: inherit; font-weight: inherit; line-height: inherit; margin: 0px; padding: 0px; vertical-align: baseline;"> or </span><a data-auth="NotApplicable" data-linkindex="2" href="https://dictionary.cambridge.org/dictionary/english/unhappiness" rel="noopener noreferrer" style="border: 0px; font: inherit; margin: 0px; padding: 0px; vertical-align: baseline;" target="_blank" title="unhappiness"><span style="border: 0px; color: black; font-family: Arial, sans-serif; font-size: inherit; font-stretch: inherit; font-style: inherit; font-variant: inherit; font-weight: inherit; line-height: inherit; margin: 0px; padding: 0px; vertical-align: baseline;">unhappiness</span></a><span style="border: 0px; font-family: Arial, sans-serif; font-size: inherit; font-stretch: inherit; font-style: inherit; font-variant: inherit; font-weight: inherit; line-height: inherit; margin: 0px; padding: 0px; vertical-align: baseline;"> that you have because you have done something </span><a data-auth="NotApplicable" data-linkindex="3" href="https://dictionary.cambridge.org/dictionary/english/wrong" rel="noopener noreferrer" style="border: 0px; font: inherit; margin: 0px; padding: 0px; vertical-align: baseline;" target="_blank" title="wrong"><span style="border: 0px; color: black; font-family: Arial, sans-serif; font-size: inherit; font-stretch: inherit; font-style: inherit; font-variant: inherit; font-weight: inherit; line-height: inherit; margin: 0px; padding: 0px; vertical-align: baseline;">wrong’.</span></a><span style="border: 0px; font-family: Arial, sans-serif; font-size: inherit; font-stretch: inherit; font-style: inherit; font-variant: inherit; font-weight: inherit; line-height: inherit; margin: 0px; padding: 0px; vertical-align: baseline;"> </span></p><p class="x_MsoNormal" style="background-color: white; font-family: "Times New Roman", serif; font-size: 12pt; margin: 0cm 0cm 0.0001pt;"><span style="border: 0px; font-family: Arial, sans-serif; font-size: inherit; font-stretch: inherit; font-style: inherit; font-variant: inherit; font-weight: inherit; line-height: inherit; margin: 0px; padding: 0px; vertical-align: baseline;"> </span></p><p class="x_MsoNormal" style="background-color: white; font-family: "Times New Roman", serif; font-size: 12pt; margin: 0cm 0cm 0.0001pt;"><span style="border: 0px; font-family: Arial, sans-serif; font-size: inherit; font-stretch: inherit; font-style: inherit; font-variant: inherit; font-weight: inherit; line-height: inherit; margin: 0px; padding: 0px; vertical-align: baseline;">Crohns disease isn’t the result of something I did wrong, nor is it something I should be ashamed of, but the feelings of guilt still linger. </span></p><p class="x_MsoNormal" style="background-color: white; font-family: "Times New Roman", serif; font-size: 12pt; margin: 0cm 0cm 0.0001pt;"><span style="border: 0px; font-family: Arial, sans-serif; font-size: inherit; font-stretch: inherit; font-style: inherit; font-variant: inherit; font-weight: inherit; line-height: inherit; margin: 0px; padding: 0px; vertical-align: baseline;"> </span></p><p class="x_MsoNormal" style="background-color: white; font-family: "Times New Roman", serif; font-size: 12pt; margin: 0cm 0cm 0.0001pt;"><span style="border: 0px; font-family: Arial, sans-serif; font-size: inherit; font-stretch: inherit; font-style: inherit; font-variant: inherit; font-weight: inherit; line-height: inherit; margin: 0px; padding: 0px; vertical-align: baseline;">The things I feel most guilty about…. first up is undoubtably food. I’ve been on the LOFFLEX diet since 2014, the diet keeps me in remission, so you would think that I’d have the will power to stay on diet and not cheat. I’m 90% compliant, but as we know when using diet to treat CD you need to be 100% compliant, so the guiltometer is steadily moving upwards. The guilt about not having the will power is compounded when I come across the smiling happy people that seem to thrive with such restrictive diets as the SCD, or plant based diets, their, “it’s easy, everyone should do this” Instagram posts make my guiltometer practically ping. </span></p><p class="x_MsoNormal" style="background-color: white; font-family: "Times New Roman", serif; font-size: 12pt; margin: 0cm 0cm 0.0001pt;"><span style="border: 0px; font-family: Arial, sans-serif; font-size: inherit; font-stretch: inherit; font-style: inherit; font-variant: inherit; font-weight: inherit; line-height: inherit; margin: 0px; padding: 0px; vertical-align: baseline;"> </span></p><p class="x_MsoNormal" style="background-color: white; font-family: "Times New Roman", serif; font-size: 12pt; margin: 0cm 0cm 0.0001pt;"><span style="border: 0px; font-family: Arial, sans-serif; font-size: inherit; font-stretch: inherit; font-style: inherit; font-variant: inherit; font-weight: inherit; line-height: inherit; margin: 0px; padding: 0px; vertical-align: baseline;">The guilt continues to flex with the way it affects everyone around me, particularly my wife and children. The fact that I sometimes can’t provide for my family, the financial inconsistencies of not working, the extra work my wife has to pick up, the fact that travelling is a huge challenge for me, constantly cancelling friends parties, feeling too unwell to watch my son play football or watch my daughter perform on stage in her latest role. I feel guilty about the close friendships I once had that no longer exist. </span></p><p class="x_MsoNormal" style="background-color: white; font-family: "Times New Roman", serif; font-size: 12pt; margin: 0cm 0cm 0.0001pt;"><span style="border: 0px; font-family: Arial, sans-serif; font-size: inherit; font-stretch: inherit; font-style: inherit; font-variant: inherit; font-weight: inherit; line-height: inherit; margin: 0px; padding: 0px; vertical-align: baseline;"> </span></p><p class="x_MsoNormal" style="background-color: white; font-family: "Times New Roman", serif; font-size: 12pt; margin: 0cm 0cm 0.0001pt;"><span style="background-attachment: initial; background-clip: initial; background-image: initial; background-origin: initial; background-position: initial; background-repeat: initial; background-size: initial; border: 0px; font-family: Arial, sans-serif; font-size: inherit; font-stretch: inherit; font-style: inherit; font-variant: inherit; font-weight: inherit; line-height: inherit; margin: 0px; padding: 0px; vertical-align: baseline;">Having IBD is a life-altering disease with no cure and without doubt you are going to feel many emotions. It’s important that you can discuss these feelings with your friends and family. It’s also important that if you have the ability to speak to a professional you will gain the tools to cope with the ups and downs it brings us. </span></p><p class="x_MsoNormal" style="background-color: white; font-family: "Times New Roman", serif; font-size: 12pt; margin: 0cm 0cm 0.0001pt;"><span style="border: 0px; font-family: Arial, sans-serif; font-size: inherit; font-stretch: inherit; font-style: inherit; font-variant: inherit; font-weight: inherit; line-height: inherit; margin: 0px; padding: 0px; vertical-align: baseline;"> </span></p><p class="x_MsoNormal" style="background-color: white; font-family: "Times New Roman", serif; font-size: 12pt; margin: 0cm 0cm 0.0001pt;"><span style="border: 0px; font-family: Arial, sans-serif; font-size: inherit; font-stretch: inherit; font-style: inherit; font-variant: inherit; font-weight: inherit; line-height: inherit; margin: 0px; padding: 0px; vertical-align: baseline;"> </span></p><p class="x_p3" style="background: white; font-family: "Times New Roman", serif; 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margin: 0px; padding: 0px; vertical-align: baseline;"> </span></p><p class="x_MsoNormal" style="background-color: white; font-family: "Times New Roman", serif; font-size: 12pt; margin: 0cm 0cm 0.0001pt;"><span style="border: 0px; color: #1d2a57; font-family: Arial, sans-serif; font-size: inherit; font-stretch: inherit; font-style: inherit; font-variant: inherit; font-weight: inherit; line-height: inherit; margin: 0px; padding: 0px; vertical-align: baseline;"> </span></p>IBdoc and mehttp://www.blogger.com/profile/04644405174471346212noreply@blogger.com0tag:blogger.com,1999:blog-4877694666061362817.post-56710910327282974842021-04-19T08:59:00.002-07:002021-04-19T09:02:08.000-07:00Has the COVID pandemic had a negative impact on the quality of care you receive from your IBD team? <p class="p1" style="font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px;"><br /></p><p class="p1" style="color: #454545; font-family: "Helvetica Neue"; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px;"><span style="font-size: medium;">Would seizing the moment and utilising the powerful technology at our disposal to create better outcomes for IBD patients?</span></p><p class="p2" style="color: #454545; font-family: "Helvetica Neue"; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px; min-height: 14px;"><span style="font-size: medium;"><br /></span></p><p class="p1" style="color: #454545; font-family: "Helvetica Neue"; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px;"><span style="font-size: medium;">I’ve had CD for 29 years, and I can honestly say, apart from a few exceptions which I will come on to, the way we use technology hasn’t really change in all those years. </span></p><p class="p1" style="color: #454545; font-family: "Helvetica Neue"; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px;"><span style="font-size: medium;"><br /></span></p><p class="p1" style="color: #454545; font-family: "Helvetica Neue"; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px;"><span style="font-size: medium;">The COVID lockdown has been particularly hard for us IBD patients; increased anxiety due to consultant appointments being cancelled, medical procedures like colonoscopies being postponed, the time we have with our consultants being limited due to the huge back log of cases, and let’s face it, the face-to-face time we had with our consultant pre COVID wasn’t exactly ideal was it? In fact, the national average for time spent with an NHS consultant is 10 minutes. 10 minutes! no wonder I was always severely anxious pre meeting with my consultant.</span></p><p class="p1" style="color: #454545; font-family: "Helvetica Neue"; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px;"><span style="font-size: medium;"><span class="Apple-converted-space"><br /></span></span></p><p class="p1" style="color: #454545; font-family: "Helvetica Neue"; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px;"><span style="font-size: medium;"><span class="Apple-converted-space"> </span>On reflection, I was, and am completely over the top when it comes to appointments with my consultant. As an example, I’d have my agenda typed out three weeks in advance of the consultation, constantly adding to it, re-writing it, running through different imagined conversations.</span></p><p class="p2" style="color: #454545; font-family: "Helvetica Neue"; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px; min-height: 14px;"><span style="font-size: medium;"><br /></span></p><p class="p1" style="color: #454545; font-family: "Helvetica Neue"; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px;"><span style="font-size: medium;">COVID has had that effect on me. I guess it’s having too much time on my hands to reflect on my CD and the care I receive. It’s hard enough dealing with the symptoms of this disease on a daily basis but when you throw the care, or lack of, you receive into the mix you can see why anxiety plays a huge part in A: the disease and B: the care we receive from our HCP.<span class="Apple-converted-space"> </span></span></p><p class="p2" style="color: #454545; font-family: "Helvetica Neue"; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px; min-height: 14px;"><span style="font-size: medium;"><br /></span></p><p class="p1" style="color: #454545; font-family: "Helvetica Neue"; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px;"><span style="font-size: medium;">So how could the future look?</span></p><p class="p2" style="color: #454545; font-family: "Helvetica Neue"; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px; min-height: 14px;"><span style="font-size: medium;"><br /></span></p><p class="p1" style="color: #454545; font-family: "Helvetica Neue"; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px;"><span style="font-size: medium;">I believe that new tech should be a core part of IBD management, I’m sure if we asked the IBD community they would reflect this opinion. Imagine new systems of IBD care that are built on new technology that would be more patient oriented and less bureaucratic A perfect example of that is the tech I have used for the last two years<b>, IB<i>Doc</i></b><i> </i>which is an App based home faecal calprotectin test kit. </span></p><p class="p1" style="color: #454545; font-family: "Helvetica Neue"; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px;"><span style="font-size: medium;"><br /></span></p><p class="p1" style="color: #454545; font-family: "Helvetica Neue"; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px;"><span style="font-size: medium;">This technology has completely changed the way I monitor my CD, and that ripple effect has implications on the way I interact with my IBD team: less calls, less invasive diagnostics, less time spent waiting and agonising for appointments. I wonder if a study was carried out on this piece of tech alone what the value in cost and resource it may save the NHS.</span></p><p class="p2" style="color: #454545; font-family: "Helvetica Neue"; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px; min-height: 14px;"><span style="font-size: medium;"><br /></span></p><p class="p1" style="color: #454545; font-family: "Helvetica Neue"; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px;"><span style="font-size: medium;">Tech tools that enable real-time 2-way communication between patients and health care providers will allow for a faster responsive service and should help to limit unscheduled, emergency appointments or needless visits to A&E dept. Delivery of app-based solutions is surely the next step in the medical tech revolution. This new tech will help to build confidence in patients and free up capacity for our time poor HCP.<span class="Apple-converted-space"> </span></span></p><p class="p2" style="color: #454545; font-family: "Helvetica Neue"; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px; min-height: 14px;"><span style="font-size: medium;"><br /></span></p><p class="p1" style="color: #454545; font-family: "Helvetica Neue"; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px;"><span style="font-size: medium;">I don’t believe the AI is quite there yet, so using chatbots for conversations around medical issues makes me feel uncomfortable. However, Chatbots are being developed for IBD HCP to collect disease activity, update medications, and obtain information on FC levels. We have real time data as citizens using Zoom, Teams, or Skype for our work meetings and this can easily be applied to health care.<span class="Apple-converted-space"> </span></span></p><p class="p2" style="color: #454545; font-family: "Helvetica Neue"; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px; min-height: 14px;"><span style="font-size: medium;"><br /></span></p><p class="p1" style="color: #454545; font-family: "Helvetica Neue"; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px;"><span style="font-size: medium;">Let’s wait and see what the tech future holds for us, I strongly believe we have a bright future on an otherwise overcast IBD day.</span></p><p class="p1" style="color: #454545; font-family: "Helvetica Neue"; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px;"><span style="font-size: medium;"><br /></span></p><p class="p2" style="color: #454545; font-family: "Helvetica Neue"; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px; min-height: 14px;"><span style="font-size: medium;"><br /></span></p><p class="p3" style="color: #e4af0a; font-family: "Helvetica Neue"; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px;"><span class="s1" style="color: #454545;"><span style="font-size: medium;">Follow me Twitter: <a href="https://twitter.com/IbdocMe"><span class="s2" style="color: #e4af0a;">https://twitter.com/IbdocMe</span></a></span></span></p><p class="p2" style="color: #454545; font-family: "Helvetica Neue"; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px; min-height: 14px;"><span style="font-size: medium;"><br /></span></p><p class="p3" style="color: #e4af0a; font-family: "Helvetica Neue"; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px;"><span class="s1" style="color: #454545;"><span style="font-size: medium;">Blog Ibdoc and me: <a href="https://ibdocandme1.blogspot.com/"><span class="s2" style="color: #e4af0a;">https://ibdocandme1.blogspot.com/</span></a></span></span></p><p class="p2" style="color: #454545; font-family: "Helvetica Neue"; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px; min-height: 14px;"><br /></p><p class="p3" style="color: #e4af0a; font-family: "Helvetica Neue"; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px;"><span class="s3" style="color: #454545; text-decoration-line: underline;"><span style="font-size: medium;"><span class="Apple-tab-span" style="white-space: pre;"> </span><span class="Apple-tab-span" style="white-space: pre;"> </span><span class="Apple-tab-span" style="white-space: pre;"> </span><span class="Apple-tab-span" style="white-space: pre;"> </span><a href="https://www.calprotectin.co.uk/"><span class="s2" style="color: #e4af0a;">https://www.calprotectin.co.uk/</span></a></span></span></p><p><span style="font-size: medium;"><span class="Apple-tab-span" style="color: #454545; font-family: "Helvetica Neue"; white-space: pre;"> </span><span class="Apple-tab-span" style="color: #454545; font-family: "Helvetica Neue"; white-space: pre;"> </span><span class="Apple-tab-span" style="color: #454545; font-family: "Helvetica Neue"; white-space: pre;"> </span><span class="Apple-tab-span" style="color: #454545; font-family: "Helvetica Neue"; white-space: pre;"> </span><a href="https://www.ibdoc.net/" style="font-family: "Helvetica Neue";"><span class="s2" style="color: #e4af0a;">https://www.ibdoc.net/</span></a> </span></p>IBdoc and mehttp://www.blogger.com/profile/04644405174471346212noreply@blogger.com0tag:blogger.com,1999:blog-4877694666061362817.post-50086630947411545972021-02-24T02:57:00.000-08:002021-02-24T02:57:25.168-08:00Still going to the toilet 10 times a day even after a bowel resection. You could have BAM! <p class="p1" style="color: #454545; font-family: "Helvetica Neue"; font-size: 14px; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px 0px 2px;"><br /></p><p class="p1" style="color: #454545; font-family: "Helvetica Neue"; font-size: 14px; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px 0px 2px;">This month’s blog is about my needless ten-year struggle dealing with chronic diarrhoea and how I tracked down a simple medication that stopped my relentless, unnecessary trips to the toilet. </p><p class="p2" style="color: #454545; font-family: "Helvetica Neue"; font-size: 14px; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px 0px 2px; min-height: 17px;"><b></b></p><p class="p1" style="color: #454545; font-family: "Helvetica Neue"; font-size: 14px; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px 0px 2px;">Before I begin, I need to put the follow in context, it was the late nighties, the Internet had just begun to permeate our lives and I had started to use it as a research tool as well as connecting with other IBD sufferers </p><p class="p1" style="color: #454545; font-family: "Helvetica Neue"; font-size: 14px; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px 0px 2px;"> </p><p class="p1" style="color: #454545; font-family: "Helvetica Neue"; font-size: 14px; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px 0px 2px;">I’ve had 2 resections in my 29-year battle with Crohns disease, for this post I’ll focus on the second, a resection of the small bowel, removing the terminal ilium or in non-technical terms, the bit where your small bowel meets the large bowel. </p><p class="p2" style="color: #454545; font-family: "Helvetica Neue"; font-size: 14px; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px 0px 2px; min-height: 17px;"><br /></p><p class="p1" style="color: #454545; font-family: "Helvetica Neue"; font-size: 14px; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px 0px 2px;">Although the operation was considered a success in terms of removing the diseased section of my bowel with no complications, I was now faced with a massive increase in toilet activities to over 10 a day with no formed stools. </p><p class="p1" style="color: #454545; font-family: "Helvetica Neue"; font-size: 14px; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px 0px 2px;"> </p><p class="p1" style="color: #454545; font-family: "Helvetica Neue"; font-size: 14px; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px 0px 2px;">In my follow up appointments with many different consultants over the course of the next ten years, the answer was disappointing the same…” sorry there is nothing more we can do about your chronic Diarrhoea’ to add to this, I was also told not to take Imodium (loperamide hydrochlorideas) it could cause blockages due to the resection site. </p><p class="p2" style="color: #454545; font-family: "Helvetica Neue"; font-size: 14px; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px 0px 2px; min-height: 17px;"><br /></p><p class="p1" style="color: #454545; font-family: "Helvetica Neue"; font-size: 14px; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px 0px 2px;">So, there I was, 2 bowel resections later, the toilet activates taking over my life with no hope for the future, as you all know this disease has the overwhelming effect of feeling complete hopeless. So, when I got a message from a fellow IBDer entitled “a possible answer to your chronic Diarrhoea’ </p><p class="p1" style="color: #454545; font-family: "Helvetica Neue"; font-size: 14px; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px 0px 2px;">I was intrigued to say the least. </p><p class="p1" style="color: #454545; font-family: "Helvetica Neue"; font-size: 14px; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px 0px 2px;"> </p><p class="p1" style="color: #454545; font-family: "Helvetica Neue"; font-size: 14px; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px 0px 2px;">It was the first time I’d heard of the condition called, BAM (Bile acid malabsorption), which is extremely common when you have the terminal ileum removed as part of a resection. Based on my research and armed with a folder full of research, I made an appointment with a private consultant to discuss BAM and my toilet activates. </p><p class="p1" style="color: #454545; font-family: "Helvetica Neue"; font-size: 14px; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px 0px 2px;"> </p><p class="p1" style="color: #454545; font-family: "Helvetica Neue"; font-size: 14px; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px 0px 2px;">If I’m being honest, I was upset after leaving the consultation, for a couple of reasons firstly, the consultant straight away suggested my increased toilet activity may be due to BAM, He was concerned that I’d never been recommend the medication for it. He suggested I have a SeHCAT scan, which is now the recommended diagnostic for BAM. He wrote up a prescription for a medication called colestyramine which is a powdered medication taken in the mornings. </p><p class="p1" style="color: #454545; font-family: "Helvetica Neue"; font-size: 14px; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px 0px 2px;"> </p><p class="p1" style="color: #454545; font-family: "Helvetica Neue"; font-size: 14px; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px 0px 2px;">The second reason I was upset was that the consult told me I had been needlessly suffering with this condition for 10 years! Ten years! I know it's pointless looking back, certainly it's pointless looking back at your life with this disease, all the family gatherings, events, meeting up with friends cancelled due to feeling terrible or in my case not being able to leave the house due to BAM. </p><p class="p1" style="color: #454545; font-family: "Helvetica Neue"; font-size: 14px; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px 0px 2px;"> </p><p class="p1" style="color: #454545; font-family: "Helvetica Neue"; font-size: 14px; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px 0px 2px;">Within a couple of day of taking one 4g sachet of colestyramine my toilet activities had reduced from 10 times a day to one a day!!! I couldn’t believe it and 10 years later I’m still on the medication, with zero side effects. I can leave the house freely without knowing where every toilet along the route will be. It's been a total liberation for me, I do and try and spread the word when I see posts about not wanting or not being able to leave to house due to diarrhea, of course this blog needs to be caveated with the fact not all increased toilet activity is due to BAM but if you’re in the situation I found myself in, make an appointment with your consultant to discuss BAM. </p><p class="p1" style="color: #454545; font-family: "Helvetica Neue"; font-size: 14px; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px 0px 2px;"> </p><p class="p1" style="color: #454545; font-family: "Helvetica Neue"; font-size: 14px; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px 0px 2px;">Here’s a few useful links to BAM </p><p class="p3" style="color: #454545; font-family: "Helvetica Neue"; font-size: 12px; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px; min-height: 14px;"><br /></p><p class="p4" style="color: #e4af0a; font-family: "Helvetica Neue"; font-size: 12px; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px;"><span class="s1" style="text-decoration-line: underline;"><a href="https://gutscharity.org.uk/advice-and-information/conditions/bile-acid-malabsorption/?gclid=CjwKCAiAyc2BBhAaEiwA44-wW1pRrol0lJeIe0UaMsLXBHTQpqauGUIqif">https://gutscharity.org.uk/advice-and-information/conditions/bile-acid-malabsorption/?gclid=CjwKCAiAyc2BBhAaEiwA44-wW1pRrol0lJeIe0UaMsLXBHTQpqauGUIqifhzsGMalV_xzZhkRGWl8RoCfg8QAvD_BwE</a></span></p><p class="p3" style="color: #454545; font-family: "Helvetica Neue"; font-size: 12px; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px; min-height: 14px;"><br /></p><p class="p4" style="color: #e4af0a; font-family: "Helvetica Neue"; font-size: 12px; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px;"><span class="s1" style="text-decoration-line: underline;"><a href="https://www.bad-uk.org/life-with-bile-acid-diarrhoea">https://www.bad-uk.org/life-with-bile-acid-diarrhoea</a></span><span class="s2" style="color: #454545;"> </span></p><p class="p2" style="color: #454545; font-family: "Helvetica Neue"; font-size: 14px; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px 0px 2px; min-height: 17px;"><br /></p><p class="p2" style="color: #454545; font-family: "Helvetica Neue"; font-size: 14px; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px 0px 2px; min-height: 17px;"><br /></p><p class="p5" style="color: #e4af0a; font-family: "Helvetica Neue"; font-size: 14px; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px 0px 2px;"><span class="s2" style="color: #454545;">Follow me on twitter <a href="https://twitter.com/IbdocMe"><span class="s3" style="color: #e4af0a; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal;">https://twitter.com/IbdocMe</span></a> </span></p><p class="p2" style="color: #454545; font-family: "Helvetica Neue"; font-size: 14px; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px 0px 2px; min-height: 17px;"><br /></p><p class="p5" style="color: #e4af0a; font-family: "Helvetica Neue"; font-size: 14px; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px 0px 2px;"><span class="s1" style="text-decoration-line: underline;"><a href="https://www.ibdoc.net/about-ibdoc/?lang=en">https://www.ibdoc.net/about-ibdoc/?lang=en<span class="s4" style="font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal;"><b></b></span></a></span></p>IBdoc and mehttp://www.blogger.com/profile/04644405174471346212noreply@blogger.com0tag:blogger.com,1999:blog-4877694666061362817.post-91350112871571623892021-01-22T03:50:00.001-08:002021-01-22T03:50:49.824-08:00A Vaccine for Crohns<p class="MsoNormal" style="background-color: white; color: #222222; font-family: Arial, sans-serif; margin: 0cm 0cm 0.0001pt;"><span lang="EN-US">As vaccines are brought to our attention due to COVID 19 I thought I’d shine a light on the vaccine being developed for Crohns disease right here in the UK<u></u> <u></u></span></p><p class="MsoNormal" style="background-color: white; color: #222222; font-family: Arial, sans-serif; margin: 0cm 0cm 0.0001pt;"><span lang="EN-US"><u></u> <u></u></span></p><p class="MsoNormal" style="background-color: white; color: #222222; font-family: Arial, sans-serif; margin: 0cm 0cm 0.0001pt;"><span lang="EN-US">We all know the simple fact that there is no cure for Crohns disease at the present time. I’m sure every person with Crohns has spent many hours searching the internet for a miracle cure, and let’s face it, some of the remedies that sellers are suggesting go from the obscure to the downright bazaar. Tree bark! Hook worms! (Disclaimer, I have myself tried hook worms), which on reflection shows how desperate I was to find the answer.<u></u> <u></u></span></p><p class="MsoNormal" style="background-color: white; color: #222222; font-family: Arial, sans-serif; margin: 0cm 0cm 0.0001pt;"><span lang="EN-US"><u></u> <u></u></span></p><p class="MsoNormal" style="background-color: white; color: #222222; font-family: Arial, sans-serif; margin: 0cm 0cm 0.0001pt;"><span lang="EN-US">However, there is potential light at the end of a very dark tunnel for us Crohns suffers, it’s in the shape of a vaccine that’s being developed right here in the UK by one of the most dedicated, knowledgeable and compassionate HCP, His name is Professor Herman Taylor and he has dedicated his life’s work to helping Crohns suffers.<u></u> <u></u></span></p><p class="MsoNormal" style="background-color: white; color: #222222; font-family: Arial, sans-serif; margin: 0cm 0cm 0.0001pt;"><span lang="EN-US"><u></u> <u></u></span></p><p class="MsoNormal" style="background-color: white; color: #222222; font-family: Arial, sans-serif; margin: 0cm 0cm 0.0001pt;"><span lang="EN-US">Before we talk about the Vaccine it’s important to understand how Prof Taylor and his team came to even consider developing a vaccine in the first place.<u></u> <u></u></span></p><p class="MsoNormal" style="background-color: white; color: #222222; font-family: Arial, sans-serif; margin: 0cm 0cm 0.0001pt;"><span lang="EN-US"><u></u> <u></u></span></p><p class="MsoNormal" style="background-color: white; color: #222222; font-family: Arial, sans-serif; margin: 0cm 0cm 0.0001pt;"><span lang="EN-US">Well, there is no cure for crohn’s disease and no cause is officially recognized however prof Herman Taylors team believe there is compelling evidence pointing to MAP as the cause of Crohns disease. <u></u> <u></u></span></p><p class="MsoNormal" style="background-color: white; color: #222222; font-family: Arial, sans-serif; margin: 0cm 0cm 0.0001pt;"><span lang="EN-US"><u></u> <u></u></span></p><p class="MsoNormal" style="background-color: white; color: #222222; font-family: Arial, sans-serif; margin: 0cm 0cm 0.0001pt;"><span lang="EN-US"><a data-saferedirecturl="https://www.google.com/url?q=https://crohnsmapvaccine.com&source=gmail&ust=1611402525279000&usg=AFQjCNFzsIBNKqTEsO7tfpKW8UHhXc7lOg" href="https://crohnsmapvaccine.com/" style="color: #1155cc;" target="_blank">https://crohnsmapvaccine.com</a><u></u> <u></u></span></p><p class="MsoNormal" style="background-color: white; color: #222222; font-family: Arial, sans-serif; margin: 0cm 0cm 0.0001pt;"><span lang="EN-US"><u></u> <u></u></span></p><p class="MsoNormal" style="background-color: white; color: #222222; font-family: Arial, sans-serif; margin: 0cm 0cm 0.0001pt;"><b><span lang="EN-US">MAP Facts<u></u> <u></u></span></b></p><p class="MsoNormal" style="background-color: white; color: #222222; font-family: Arial, sans-serif; margin: 0cm 0cm 0.0001pt;"><span lang="EN-US"><u></u> <u></u></span></p><p class="MsoNormal" style="background-color: white; color: #222222; font-family: Arial, sans-serif; margin: 0cm 0cm 0.0001pt;"><span lang="EN-US">MAP is a type of bacteria its rather convoluted name is, microbacterium AVM paratuberculosis or MAP, in short it belongs to a family of bacteria called micro bacteria, which also includes tuberculosis and leprosy. <u></u> <u></u></span></p><p class="MsoNormal" style="background-color: white; color: #222222; font-family: Arial, sans-serif; margin: 0cm 0cm 0.0001pt;"><span lang="EN-US"><u></u> <u></u></span></p><p class="MsoNormal" style="background-color: white; color: #222222; font-family: Arial, sans-serif; margin: 0cm 0cm 0.0001pt;"><span lang="EN-US">MAP is proven two cause Jones disease a form of inflammatory bowel disease affecting domestic lie Livestock that is strikingly similar to Crohns disease.<u></u> <u></u></span></p><p class="MsoNormal" style="background-color: white; color: #222222; font-family: Arial, sans-serif; margin: 0cm 0cm 0.0001pt;"><span lang="EN-US"><u></u> <u></u></span></p><p class="MsoNormal" style="background-color: white; color: #222222; font-family: Arial, sans-serif; margin: 0cm 0cm 0.0001pt;"><span lang="EN-US">It appears that we are widely exposed to MAP from the food we eat, (Livestock) to the milk we drink. In fact, milk from infected animals often contains M A P and unfortunately the M a P is not killed off by the pasteurization process. <u></u> <u></u></span></p><p class="MsoNormal" style="background-color: white; color: #222222; font-family: Arial, sans-serif; margin: 0cm 0cm 0.0001pt;"><span lang="EN-US"><u></u> <u></u></span></p><p class="MsoNormal" style="background-color: white; color: #222222; font-family: Arial, sans-serif; margin: 0cm 0cm 0.0001pt;"><span lang="EN-US">MAP is also present in the poo of infected animals, MAP has also been detected in our rivers and in one study from Lancaster University their research suggested that MAP is also present in our water system drinking water and its even been detected in shower heads.<u></u> <u></u></span></p><p class="MsoNormal" style="background-color: white; color: #222222; font-family: Arial, sans-serif; margin: 0cm 0cm 0.0001pt;"><span lang="EN-US"><u></u> <u></u></span></p><p class="MsoNormal" style="background-color: white; color: #222222; font-family: Arial, sans-serif; margin: 0cm 0cm 0.0001pt;"><span lang="EN-US">MAP is incredibly difficult to detect in people because, get this, you cannot see it under an ordinary microscope, not only that, it’s very difficult to culture and grow.<u></u> <u></u></span></p><p class="MsoNormal" style="background-color: white; color: #222222; font-family: Arial, sans-serif; margin: 0cm 0cm 0.0001pt;"><span lang="EN-US"><u></u> <u></u></span></p><p class="MsoNormal" style="background-color: white; color: #222222; font-family: Arial, sans-serif; margin: 0cm 0cm 0.0001pt;"><span lang="EN-US"><a data-saferedirecturl="https://www.google.com/url?q=https://crohnsmapvaccine.com/treatment/map/&source=gmail&ust=1611402525280000&usg=AFQjCNGTm7h6YslQimfcsrvSFOiy5XbKAQ" href="https://crohnsmapvaccine.com/treatment/map/" style="color: #1155cc;" target="_blank">https://crohnsmapvaccine.com/<wbr></wbr>treatment/map/</a><u></u> <u></u></span></p><p class="MsoNormal" style="background-color: white; color: #222222; font-family: Arial, sans-serif; margin: 0cm 0cm 0.0001pt;"><span lang="EN-US"><u></u> <u></u></span></p><p class="MsoNormal" style="background-color: white; color: #222222; font-family: Arial, sans-serif; margin: 0cm 0cm 0.0001pt;"><b><span lang="EN-US">So, Crohns is not technically an autoimmune disease?<u></u> <u></u></span></b></p><p class="MsoNormal" style="background-color: white; color: #222222; font-family: Arial, sans-serif; margin: 0cm 0cm 0.0001pt;"><span lang="EN-US"><u></u> <u></u></span></p><p class="MsoNormal" style="background-color: white; color: #222222; font-family: Arial, sans-serif; margin: 0cm 0cm 0.0001pt;"><span lang="EN-US">It looks like us Crohns suffers have a wonky immune response to MAP, as </span>When healthy people are exposed to MAP, their macrophages gobble up and digest MAP and their T-cells ‘see’ and eradicate any MAP-containing cells. When someone susceptible is exposed to MAP, it is a different story. Their macrophages eat MAP but cannot digest it and MAP remains, happily living inside our bodies. In addition, their T-cells are ‘blind’ to MAP; they cannot eradicate it and MAP is allowed to multiply unchecked, generating vast numbers of organisms inside the gut as well as other tissues (even inside the T-cells themselves). This is the person who develops Crohns Disease.<u></u> <u></u></p><p class="MsoNormal" style="background-color: white; color: #222222; font-family: Arial, sans-serif; margin: 0cm 0cm 0.0001pt;"><u></u> <u></u></p><p class="MsoNormal" style="background-color: white; color: #222222; font-family: Arial, sans-serif; margin: 0cm 0cm 0.0001pt;"><span lang="EN-US"><a data-saferedirecturl="https://www.google.com/url?q=http://crohnsmapvaccine.com/treatment/map/&source=gmail&ust=1611402525280000&usg=AFQjCNEqfmx4sb0ED4BvBcl_wssKkZVlaA" href="http://crohnsmapvaccine.com/treatment/map/" style="color: #1155cc;" target="_blank">http://crohnsmapvaccine.com/<wbr></wbr>treatment/map/</a></span><u></u> <u></u></p><p class="MsoNormal" style="background-color: white; color: #222222; font-family: Arial, sans-serif; margin: 0cm 0cm 0.0001pt;"><u></u> <u></u></p><p class="MsoNormal" style="background-color: white; color: #222222; font-family: Arial, sans-serif; margin: 0cm 0cm 0.0001pt;"><b>How does MAP actually cause disease?<u></u> <u></u></b></p><p class="MsoNormal" style="background-color: white; color: #222222; font-family: Arial, sans-serif; margin: 0cm 0cm 0.0001pt;"><b><u></u> <u></u></b></p><p class="MsoNormal" style="background-color: white; color: #222222; font-family: Arial, sans-serif; margin: 0cm 0cm 0.0001pt;">MAP itself does not directly cause gross inflammation. Instead it initiates a cascade of events with disastrous consequences. The first is to cause dysregulation of the immune system, which then destabilises the gut wall, rendering it leaky. Leakiness of the gut wall allows it to be penetrated by other gut organisms (e.g. bacteria such as E.coli, yeasts and viruses) and irritant food residues. It is these secondary invaders and irritants that cause the massive inflammatory response which creates the Crohns pathology. The second is to damage and inflame the delicate nervous system in the gut wall, which makes the consequences of the immune dysregulation a lot worse.<u></u> <u></u></p><p class="MsoNormal" style="background-color: white; color: #222222; font-family: Arial, sans-serif; margin: 0cm 0cm 0.0001pt;"><u></u> <u></u></p><p class="MsoNormal" style="background-color: white; color: #222222; font-family: Arial, sans-serif; margin: 0cm 0cm 0.0001pt;">Immunosuppressant’s can reduce Crohns symptoms by lessening the inflammatory reaction in the gut wall (some may also possess some direct anti-MAP activity). Antibiotics like metronidazole can reduce Crohns symptoms by killing off other bacteria which invade the gut wall. Bland diets can reduce Crohns symptoms by removing some of the irritants which trigger more inflammation, <b>but unless you treat MAP it, you are only treating the mechanism and not the cause of Crohns Disease. That is why we</b><b> need this therapeutic and preventative modern Vaccine.</b><u></u> <u></u></p><p class="MsoNormal" style="background-color: white; color: #222222; font-family: Arial, sans-serif; margin: 0cm 0cm 0.0001pt;"><u></u> <u></u></p><p class="MsoNormal" style="background-color: white; color: #222222; font-family: Arial, sans-serif; margin: 0cm 0cm 0.0001pt;"><span lang="EN-US"><a data-saferedirecturl="https://www.google.com/url?q=http://crohnsmapvaccine.com/treatment/map/&source=gmail&ust=1611402525280000&usg=AFQjCNEqfmx4sb0ED4BvBcl_wssKkZVlaA" href="http://crohnsmapvaccine.com/treatment/map/" style="color: #1155cc;" target="_blank">http://crohnsmapvaccine.com/<wbr></wbr>treatment/map/</a></span><u></u> <u></u></p><p class="MsoNormal" style="background-color: white; color: #222222; font-family: Arial, sans-serif; margin: 0cm 0cm 0.0001pt;"><u></u> <u></u></p><p class="MsoNormal" style="background-color: white; color: #222222; font-family: Arial, sans-serif; margin: 0cm 0cm 0.0001pt;">I always look forward to the latest new on the Crohns MAP Vaccine, and just imagine for a second the positive impacted the vaccine could have on our lives. We are incredibly fortunate to have the world’s leading Crohns and vaccine specialist working together to deliver the vaccine. Unlike the COVID vaccine which has seen unprecedented cooperation and unlimited funds, the Crohns MAP vaccine requires funding at each stage of its development, so please tell your friends, neighbours and fundraisers to be part of the solution to this hideous disease.<u></u> <u></u></p><p class="MsoNormal" style="background-color: white; color: #222222; font-family: Arial, sans-serif; margin: 0cm 0cm 0.0001pt;"><u></u> <u></u></p><p class="MsoNormal" style="background-color: white; color: #222222; font-family: Arial, sans-serif; margin: 0cm 0cm 0.0001pt;"><b>How to donate<u></u> <u></u></b></p><p class="MsoNormal" style="background-color: white; color: #222222; font-family: Arial, sans-serif; margin: 0cm 0cm 0.0001pt;"><b><u></u> <u></u></b></p><p class="MsoNormal" style="background-color: white; color: #222222; font-family: Arial, sans-serif; margin: 0cm 0cm 0.0001pt;"><span lang="EN-US"><a data-saferedirecturl="https://www.google.com/url?q=https://crohnsmapvaccine.com/fundraising/&source=gmail&ust=1611402525280000&usg=AFQjCNEO2RLCwPF9XGRB-PuYeoR5Q8OYqQ" href="https://crohnsmapvaccine.com/fundraising/" style="color: #1155cc;" target="_blank"><span lang="EN-GB">https://crohnsmapvaccine.com/<wbr></wbr>fundraising/</span></a></span><u></u> <u></u></p><p class="MsoNormal" style="background-color: white; color: #222222; font-family: Arial, sans-serif; margin: 0cm 0cm 0.0001pt;"><u></u> <u></u></p><p class="MsoNormal" style="background-color: white; color: #222222; font-family: Arial, sans-serif; margin: 0cm 0cm 0.0001pt;"><u></u> <u></u></p><p class="MsoNormal" style="background-color: white; color: #222222; font-family: Arial, sans-serif; margin: 0cm 0cm 0.0001pt;"><b>Crohns and MAP FAQ’s<u></u> <u></u></b></p><p class="MsoNormal" style="background-color: white; color: #222222; font-family: Arial, sans-serif; margin: 0cm 0cm 0.0001pt;"><u></u> <u></u></p><p class="MsoNormal" style="background-color: white; color: #222222; font-family: Arial, sans-serif; margin: 0cm 0cm 0.0001pt;"><span lang="EN-US"><a data-saferedirecturl="https://www.google.com/url?q=https://crohnsmapvaccine.com/faq/&source=gmail&ust=1611402525280000&usg=AFQjCNGh4xDYi6CYwfgXbAdO3bkdEv_LzQ" href="https://crohnsmapvaccine.com/faq/" style="color: #1155cc;" target="_blank"><span lang="EN-GB">https://crohnsmapvaccine.com/<wbr></wbr>faq/</span></a></span><span lang="EN-US"><u></u> <u></u></span></p><p class="MsoNormal" style="background-color: white; color: #222222; font-family: Arial, sans-serif; margin: 0cm 0cm 0.0001pt;"><span lang="EN-US"><u></u> <u></u></span></p><p class="MsoNormal" style="background-color: white; color: #222222; font-family: Arial, sans-serif; margin: 0cm 0cm 0.0001pt;"><span lang="EN-US"><a data-saferedirecturl="https://www.google.com/url?q=https://ibdocandme1.blogspot.com/&source=gmail&ust=1611402525280000&usg=AFQjCNH3AN1yaNl9iIKxuy05N4mrifIcpg" href="https://ibdocandme1.blogspot.com/" style="color: #1155cc;" target="_blank">https://ibdocandme1.blogspot.<wbr></wbr>com/</a><u></u> </span></p>IBdoc and mehttp://www.blogger.com/profile/04644405174471346212noreply@blogger.com0tag:blogger.com,1999:blog-4877694666061362817.post-54289970229149389752020-11-23T08:43:00.000-08:002020-11-23T08:43:27.800-08:00 IBD, mental health disorders and food phobias.<p><br /></p><p class="p3" style="color: #454545; font-family: "Helvetica Neue"; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px;"><span style="font-size: medium;">This month’s blog is difficult for me to write down, I guess admitting to an eating disorder is something that I was always going to struggle with, certainly when I began to read back my blog it reminded me of the hole I’ve dug for myself, however, after spending time researching for this month’s blog and the therapy I’m receiving I am now being to understand why eating disorders are prevent in the IBD community.</span></p><p class="p3" style="color: #454545; font-family: "Helvetica Neue"; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px;"><span style="font-size: medium;"> </span></p><p class="p3" style="color: #454545; font-family: "Helvetica Neue"; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px;"><span style="font-size: medium;">So, what’s the link between IBD and eating disorders?</span></p><p class="p3" style="color: #454545; font-family: "Helvetica Neue"; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px;"><span style="font-size: medium;"> </span></p><p class="p3" style="color: #454545; font-family: "Helvetica Neue"; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px;"><span style="font-size: medium;">Research, though limited, suggests an overlap between IBD and eating disorders. The few available studies show that IBD may indeed play a role in eating disorder development and illness. This research describes the relationship between the two conditions as reciprocal—they affect and are affected by each other. The presence of IBD can complicate illness and recovery from an eating disorder and vice versa. </span></p><p class="p3" style="color: #454545; font-family: "Helvetica Neue"; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px;"><span style="font-size: medium;"> </span></p><p class="p3" style="color: #454545; font-family: "Helvetica Neue"; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px;"><span style="font-size: medium;">The experience of physical discomfort when eating can also heighten anxiety or fear at mealtimes, and the unpredictable nature of IBD can spark a desire to limit intake in an effort to limit IBD symptoms. Doing so may provide an illusory sense of control around food, or a general means to cope with the stress of a debilitating gastrointestinal illness.</span></p><p class="p2" style="color: #454545; font-family: "Helvetica Neue"; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px; min-height: 14px;"><span style="font-size: medium;"><br /></span></p><p class="p3" style="color: #454545; font-family: "Helvetica Neue"; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px;"><span style="font-size: medium;">My own experience of disordered eating began like most people with Crohns or colitis, when having a flare up of the disease causes one to immediately restrict the food intake, as the pain of eating is too much. This of course leads to severe weight loss, which in turn can lead to other complication; I found the most challenging aspect of my weight loss (I’m 6ft `2 and weighed just 10 stone at my lowest point) were the unintended comments from friends and family,…you’ve hardly touch your dinner, if you keep going on they’ll be nothing left of you. You look really skinny, I’m so jealous!<span class="Apple-converted-space"> </span></span></p><p class="p3" style="color: #454545; font-family: "Helvetica Neue"; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px;"><span class="Apple-converted-space"><span style="font-size: medium;"><br /></span></span></p><p class="p3" style="color: #454545; font-family: "Helvetica Neue"; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px;"><span style="font-size: medium;">Obviously, these comments hurt but I have to remind myself that friends and family have no idea of the reasons behind the dramatic weight loss. Although my eating disorder may have its origins in the many flare-ups over the years, I believe mine started when I began controlling my Crohns by using diet Specifically, the LOFFLEX diet. I’m aware controlling IBD with diet is still a contentious issue for many consultants and patients alike, for me it isn’t a contentious issue at all, if I eat, chicken, white rice, carrots, prawns, rice cakes rice milk and oven chips, my Crohns is under control (confirmed via Ibdoc <a href="https://www.alphalabs.co.uk/bi-ibdoc"><span class="s1" style="color: #e4af0a;">https://www.alphalabs.co.uk/bi-ibdoc</span></a>) If I go off my diet. My Calprotectin levels shoot up dramatically and I begin to feel unwell.</span></p><p class="p3" style="color: #454545; font-family: "Helvetica Neue"; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px;"><span style="font-size: medium;"><br /></span></p><p class="p3" style="color: #454545; font-family: "Helvetica Neue"; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px;"><span style="font-size: medium;">So back to my diet, my saviour and my foe, no matter how hard I’ve tried over the last 10 years to introduce new foods into my diet, I’ve failed miserably, which then leads to me being self-critical, and my inner voice screaming: why can’t you just stick to the diet? Why can’t you just try the introductions of new foods, what fool would knowingly eat foods that will cause your Crohns to flare?<span class="Apple-converted-space"> </span></span></p><p class="p3" style="color: #454545; font-family: "Helvetica Neue"; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px;"><span class="Apple-converted-space"><span style="font-size: medium;"><br /></span></span></p><p class="p3" style="color: #454545; font-family: "Helvetica Neue"; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px;"><span style="font-size: medium;">I now realise I have developed a full on eating disorder, I regularly binge on foods at weekends that make me feel unwell,<span class="Apple-converted-space"> </span>and honestly I don’t even enjoy the foods I’m binging on,<span class="Apple-converted-space"> </span>I often eat secretly in the kitchen and feel like a fool when I get “caught’ in the act, which is not only hard to swallow, (pun intended) but I now understand it’s manifestation in other parts of my life, particularly when I have a shopping trolley full of my foods for the week, chicken, whole sale boxes full of rice cakes and oven chips, I often imagine some random person making derogatory comments on the contents of my shopping trolley, so I’m in and out quick,<span class="Apple-converted-space"> </span>that’s a bit mad, isn’t it?</span></p><p class="p2" style="color: #454545; font-family: "Helvetica Neue"; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px; min-height: 14px;"><span style="font-size: medium;"><br /></span></p><p class="p3" style="color: #454545; font-family: "Helvetica Neue"; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px;"><span style="font-size: medium;">I’m so grateful for the therapy I receive for my eating disorder; the therapy has put my internal voice and conversations into context, and helped my councillor Identify and labels my disorder as ARFID. ARFID stands for: avoidance restrictive food intake disorder and it’s a relatively new eating disorder diagnosis Previously coined “Selective Eating”, it involves limitations and/or restrictions around food, particularly around the intake of certain types of food or certain amounts.</span></p><p class="p2" style="color: #454545; font-family: "Helvetica Neue"; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px; min-height: 14px;"><span style="font-size: medium;"><br /></span></p><p class="p3" style="color: #454545; font-family: "Helvetica Neue"; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px;"><span style="font-size: medium;">Unlike other eating disorder diagnoses (like <a href="https://www.orri-uk.com/about-anorexia/"><span class="s2" style="color: #e4af0a;">Anorexia</span></a>, <a href="https://www.orri-uk.com/about-bulimia/"><span class="s2" style="color: #e4af0a;">Bulimia</span></a> or <a href="https://www.orri-uk.com/about-binge-eating-disorder/"><span class="s2" style="color: #e4af0a;">Binge Eating Disorder</span></a>) it doesn’t typically involve distress around body image or a pursuit of thinness. Rather, it is classified by a rejection of certain foods often due to sensitivity in taste, texture, smell, appearance or temperature. Someone suffering with ARFID may struggle with socialising and eating around others, and suffer from serious nutritional deficiencies, weight loss in adults and stunted growth in children.</span></p><p class="p2" style="color: #454545; font-family: "Helvetica Neue"; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px; min-height: 14px;"><span style="font-size: medium;"><br /></span></p><p class="p3" style="color: #454545; font-family: "Helvetica Neue"; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px;"><span style="font-size: medium;">If you can identify with some of the themes in this blog, don’t beat yourself up! We have enough to deal with managing our IBD physically and mentally daily, remember we didn’t ask for this disease, it’s not our fault IBD makes us feel less than. There is help out there too, I’ll leave this blog with links to various organisations that can help.</span></p><p class="p2" style="color: #454545; font-family: "Helvetica Neue"; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px; min-height: 14px;"><span style="font-size: medium;"><br /></span></p><p class="p2" style="color: #454545; font-family: "Helvetica Neue"; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px; min-height: 14px;"><span style="font-size: medium;"><br /></span></p><p class="p4" style="color: #e4af0a; font-family: "Helvetica Neue"; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px;"><span class="s3" style="text-decoration-line: underline;"><a href="https://www.beateatingdisorders.org.uk/support-services/helplines"><span style="font-size: medium;">https://www.beateatingdisorders.org.uk/support-services/helplines</span></a></span></p><p class="p2" style="color: #454545; font-family: "Helvetica Neue"; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px; min-height: 14px;"><span style="font-size: medium;"><br /></span></p><p class="p4" style="color: #e4af0a; font-family: "Helvetica Neue"; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px;"><span class="s3" style="text-decoration-line: underline;"><a href="https://eating-disorders.org.uk/"><span style="font-size: medium;">https://eating-disorders.org.uk/</span></a></span></p><p class="p2" style="color: #454545; font-family: "Helvetica Neue"; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px; min-height: 14px;"><span style="font-size: medium;"><br /></span></p><p class="p4" style="color: #e4af0a; font-family: "Helvetica Neue"; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px;"><span class="s3" style="text-decoration-line: underline;"><a href="https://www.swedauk.org/"><span style="font-size: medium;">https://www.swedauk.org/</span></a></span></p><p class="p2" style="color: #454545; font-family: "Helvetica Neue"; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px; min-height: 14px;"><span style="font-size: medium;"><br /></span></p><p class="p5" style="color: #e4af0a; font-family: "Helvetica Neue"; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px 0px 2px;"><span class="s4" style="color: #454545;"><span style="font-size: medium;"><b>Follow me on Twitter </b><a href="https://twitter.com/IbdocMe"><span class="s1" style="color: #e4af0a;"><b>https://twitter.com/IbdocMe</b></span></a><b> </b></span></span></p><p class="p2" style="color: #454545; font-family: "Helvetica Neue"; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px; min-height: 14px;"><span style="font-size: medium;"><br /></span></p><p class="p2" style="color: #454545; font-family: "Helvetica Neue"; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px; min-height: 14px;"><span style="font-size: medium;"><br /></span></p><p class="p2" style="color: #454545; font-family: "Helvetica Neue"; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px; min-height: 14px;"><span style="font-size: medium;"><br /></span></p><p class="p2" style="color: #454545; font-family: "Helvetica Neue"; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px; min-height: 14px;"><span style="font-size: medium;"><br /></span></p><p class="p2" style="color: #454545; font-family: "Helvetica Neue"; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px; min-height: 14px;"><span style="font-size: medium;"><br /></span></p><p class="p2" style="color: #454545; font-family: "Helvetica Neue"; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px; min-height: 14px;"><span style="font-size: medium;"><br /></span></p><p class="p2" style="color: #454545; font-family: "Helvetica Neue"; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px; min-height: 14px;"><span class="Apple-converted-space"><span style="font-size: medium;"> </span></span></p><p class="p2" style="color: #454545; font-family: "Helvetica Neue"; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px; min-height: 14px;"><span style="font-size: medium;"><br /></span></p><p class="p2" style="color: #454545; font-family: "Helvetica Neue"; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px; min-height: 14px;"><span style="font-size: medium;"><br /></span></p><p class="p2" style="color: #454545; font-family: "Helvetica Neue"; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px; min-height: 14px;"><span style="font-size: medium;"><br /></span></p><p class="p2" style="color: #454545; font-family: "Helvetica Neue"; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px; min-height: 14px;"><span style="font-size: medium;"><br /></span></p><p class="p2" style="color: #454545; font-family: "Helvetica Neue"; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px; min-height: 14px;"><span style="font-size: medium;"><br /></span></p><p class="p2" style="color: #454545; font-family: "Helvetica Neue"; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px; min-height: 14px;"><span style="font-size: medium;"><br /></span></p><p class="p2" style="color: #454545; font-family: "Helvetica Neue"; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px; min-height: 14px;"><span style="font-size: medium;"><br /></span></p><p class="p6" style="color: #454545; font-family: "Helvetica Neue"; font-size: 14px; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px 0px 2px; min-height: 17px;"><b></b><br /></p>IBdoc and mehttp://www.blogger.com/profile/04644405174471346212noreply@blogger.com0tag:blogger.com,1999:blog-4877694666061362817.post-29316574343227492292020-09-30T07:55:00.001-07:002020-10-07T01:47:17.539-07:00 Another milestone moment for me and my Crohns! <p><br /></p><p class="p1" style="color: #454545; font-family: "Helvetica Neue"; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px;">
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</p><p style="background: white; font-size: 12px; margin: 0cm 0cm 0.0001pt;"><span style="color: #222222; font-family: Arial; font-size: 12pt;">Hurrah! It’s my 10th
Anniversary and according to Google:<o:p></o:p></span></p>
<p style="background: white; font-size: 12px; margin: 0cm 0cm 0.0001pt;"><span style="color: #222222; font-family: Arial; font-size: 12pt;"><o:p> </o:p></span></p>
<p style="background: white; font-size: 12px; margin: 0cm 0cm 0.0001pt;"><span style="color: #222222; font-family: Arial; font-size: 12pt;">‘Traditionally, the <b>10th</b> year
of marriage is marked with tin or aluminium. Both materials represent the
durability and flexibility needed to sustain a loving union.’<o:p></o:p></span></p>
<p style="background: white; font-size: 12px; margin: 0cm 0cm 0.0001pt;"><span style="color: #222222; font-family: Arial; font-size: 12pt;"><o:p> </o:p></span></p>
<p style="background: white; font-size: 12px; margin: 0cm 0cm 0.0001pt;"><span style="color: #222222; font-family: Arial; font-size: 12pt;">And oh my, have we
shown durability and flexibility between us. Not me and my wife of course, no I
mean, it’s ten years this weekend that my lifelong partner Crohns re- entered
my life, with a bucket full of Chinese wings and a blue light ride to that most
exotic of places, Wythenshawe hospital A&E <o:p></o:p></span></p>
<p style="background: white; font-size: 12px; margin: 0cm 0cm 0.0001pt;"><span style="color: #222222; font-family: Arial; font-size: 12pt;"><o:p> </o:p></span></p>
<p style="background: white; font-size: 12px; margin: 0cm 0cm 0.0001pt;"><span style="color: #222222; font-family: Arial; font-size: 12pt;">And that flare up
exactly ten years ago changed everything!<o:p></o:p></span></p>
<p style="background: white; font-size: 12px; margin: 0cm 0cm 0.0001pt;"><span style="color: #222222; font-family: Arial; font-size: 12pt;"><o:p> </o:p></span></p>
<p style="background: white; font-size: 12px; margin: 0cm 0cm 0.0001pt;"><span style="color: #222222; font-family: Arial; font-size: 12pt;">No more cut and shut,
chopping out the diseased part of the bowel, and then crack on with your life. By
2010 the medical profession, dealing with an ever rising occurrence of Crohns
disease, had worked out it was better to manage the disease with a whole new
raft of medications than hack away at the bowel.<o:p></o:p></span></p>
<p style="background: white; font-size: 12px; margin: 0cm 0cm 0.0001pt;"><span style="color: #222222; font-family: Arial; font-size: 12pt;"><o:p> </o:p></span></p>
<p style="background: white; font-size: 12px; margin: 0cm 0cm 0.0001pt;"><span style="color: #222222; font-family: Arial; font-size: 12pt;">And how I miss those
days of elective surgery, some days, I just want to get a knife and chop the
whole thing out myself and other days, it’s familiarity seems like an old friend
(that you never really liked). But no, this time round it’s all been about
treatments, since September the 28<sup>th</sup> 2010, I’ve tried, 6MP, Azathioprine, Infliximab, LDN, triple antibiotic therapy and the most effective of all the
treatments for me is a low residue, low fibre diet.<o:p></o:p></span></p>
<p style="background: white; font-size: 12px; margin: 0cm 0cm 0.0001pt;"><span style="color: #222222; font-family: Arial; font-size: 12pt;"><o:p> </o:p></span></p>
<p style="background: white; font-size: 12px; margin: 0cm 0cm 0.0001pt;"><span style="color: #222222; font-family: Arial; font-size: 12pt;">It’s still a journey.
One of those like when you climb to the top of the mountain, quietly
congratulating yourself, then you discover there’s another peak, and another
peak and another…………<o:p></o:p></span></p>
<p style="background: white; font-size: 12px; margin: 0cm 0cm 0.0001pt;"><span style="color: #222222; font-family: Arial; font-size: 12pt;"><o:p> </o:p></span></p>
<p style="background: white; font-size: 12px; margin: 0cm 0cm 0.0001pt;"><span style="color: #222222; font-family: Arial; font-size: 12pt;">But you know you just got
to keep going, this time around, armed with IBDoc, which again has been such a
useful tool in lock down, as I haven’t seen my consultant since last February,
however, I have seven months of IBDoc data, so I’m comfortable with the wait.
And as things are shaping up with the pandemic, it looks like we’re in for the
long haul! </span></p>
<p class="MsoNormal" style="background: white;"><span style="color: #222222; font-family: Arial;">Follow
me on Twitter </span><span lang="EN-US"><span style="color: blue; font-family: Arial; mso-fareast-font-family: "Times New Roman"; text-decoration: none; text-underline: none;"><a href="https://www.blogger.com/twitter.com/ibdocMe">@ibdocMe</a></span></span></p>
<p class="MsoNormal" style="background: white;"><span lang="EN-US"><span style="color: purple; font-family: Arial; mso-fareast-font-family: "Times New Roman"; text-decoration: none; text-underline: none;"><a href="http://www.calprotectin.co.uk/">www.calprotectin.co.uk</a></span></span></p>
<p class="MsoNormal" style="background: white;"><span lang="EN-US"><a href="https://www.alphalabs.co.uk/diagnostic-products/faecal-testing/faecal-calprotectin-assay-range/calprotectin-home-testing"><span style="color: purple; font-family: Arial; mso-fareast-font-family: "Times New Roman"; text-decoration: none; text-underline: none;">https://www.alphalabs.co.uk/diagnostic-products/faecal-testing/faecal-calprotectin-assay-range/calprotectin-home-testing</span></a></span><span style="color: #333333; mso-ansi-language: EN-GB; mso-ascii-font-family: Cambria; mso-bidi-font-family: "Times New Roman"; mso-fareast-font-family: "Times New Roman"; mso-hansi-font-family: Cambria;"><o:p></o:p></span></p>
<p class="MsoNormal" style="font-size: 12px;"><span lang="EN-US"><o:p> </o:p></span></p>
<!--EndFragment--><br /><p></p>IBdoc and mehttp://www.blogger.com/profile/04644405174471346212noreply@blogger.com0tag:blogger.com,1999:blog-4877694666061362817.post-16663781968802729762020-08-31T06:40:00.000-07:002020-08-31T06:40:31.618-07:00Things you only know if… Your partner has a chronic illness<p><br /></p><p class="MsoNormal" style="font-family: Calibri, sans-serif; font-size: 11pt; line-height: 15.6933px; margin: 0cm 0cm 8pt;">I’ve been with my husband twenty eight years and he’s been ‘sick’ for twenty seven and a half of them and it’s not dissimilar to lock-down. Cancellations, can’t do what you want when you want, often having to put other people’s health before your own!<o:p></o:p></p><p class="MsoNormal" style="font-family: Calibri, sans-serif; font-size: 11pt; line-height: 15.6933px; margin: 0cm 0cm 8pt;"><br />When you make your wedding vows, like when you listen to the small print in an advert you agree to ‘in sickness and in health’ but you rarely comprehend what that means. Even if you think you know what you’re signing up to.<br /><br />Lee and I married on our tenth anniversary by which time he already had two major operations for Crohn’s disease. I thought I knew what I was dealing with.<br /><br />It didn’t put me off. I didn’t have a second thought about the commitment I was taking on. If you’ve ever loved, you’ll know what it’s like to want to walk the ends of the earth for your partner. Ever the optimist, our quests to find a cure have seen us chasing the world’s leading doctors in Australia and America, trying all sorts of mad cap diets, experimenting with worms! At times it’s been like a scene from ‘Lorenzo’s oil’ in our house.<br /><br />And the money. It costs a lot to be sick. Prescriptions, supplements, probiotics, consultant fees, hospital parking fees, healthy eating, loss of income. It’s a financial burden not to be underestimated.<br /><br />What I didn’t comprehend though was the daily toil on the mind. Both our minds. Dust yourself off and start again. That’s tiring. When you have to do it weekly or even daily. Its always two steps forward, one step back.<br /><br />Crohn’s disease is a hidden illness and an embarrassing illness so people stop asking you too. We don’t get asked to dinner much understandably (the diet!), we don’t get asked to those ‘families going away together’ weekends as we’ll invariably cancel. And if I’m honest he doesn’t even like to socialise anymore. In one of his blogs ‘10 things not to say to a Crohn’s patient’ number 1 on the list ‘well you look ok?’ He’d just rather not put himself in the room in the first place.<br /><br />It’s probably made us stronger, we’re fairly indestructible. When you watch someone in so much pain or stand by helplessly thinking they’re going to die. It kinda focuses you on what’s important. That the kids have a loving dad, that I have a loving husband. We rarely row and when we do we resolve it quickly. It seems pointless expending the energy that we need to save for other more significant matters.<br /><br />And I admire him so much for the fight, for the resistance to what seems at times like torture, for the times he leads a business meeting with a head full of fog and a stomach full of cramps.<br /><br />My work as a social entrepreneur sees me working with all types of people and in the past I’ve found myself standing on a stage or doing TV interview, evangelising about social impact and positive change and flicking glances at my phone in case I need to get back early cos its just got too much at home.<br /><br />And jokingly Lee points out on a regular basis that I’d be nothing without him! To that end I concur. Not just because of the slack he picks up over the years in home care and childcare but also because ironically, so many career decisions have been made as a result of putting my family first. I didn’t necessarily choose to do a lot of the things I’ve done, they just fitted with what my family needed from me, be that hard fast cash or just flexible hours. But not least, because when it all gets overwhelming he’s there, solid in his support to pick up the pieces.<br /><br />I’m definitely no saint. I feel sorry for us a lot. I wistfully watch as friends travel and socialise, as not being able to travel, that’s what I find the hardest. I can’t even pretend I haven’t thought ‘ha!’ When everyone’s trips got cancelled this summer at short notice – ‘now you know what I feel like!’<br /><br />But I am grateful. As ridiculous as it sounds I’m grateful for all the beautiful things people do when you least expect it. A kind text, a knowing nod, an offer of support. And for the ever present rock, that is my family, my wonderful family and friends support network.<br /><br />Living with illness is humbling and insightful. You realise everyone’s got their challenges to deal with and you’ll often have no idea. Unless you ask.</p><p class="MsoNormal" style="font-family: Calibri, sans-serif; font-size: 11pt; line-height: 15.6933px; margin: 0cm 0cm 8pt;"><br /></p><p class="MsoNormal" style="font-family: Calibri, sans-serif; font-size: 11pt; line-height: 15.6933px; margin: 0cm 0cm 8pt;"><br /></p><div class="MsoNormal" style="background: white; color: #333333; font-family: Cambria; margin: 0cm 0cm 0.0001pt;"><span style="background-attachment: initial; background-clip: initial; background-image: initial; background-origin: initial; background-position: initial; background-repeat: initial; background-size: initial; color: #222222; font-family: Arial;"><span style="font-size: x-small;">Follow me on Twitter </span></span><span style="font-size: 12pt;"><o:p></o:p></span><a href="https://twitter.com/IbdocMe" style="background-color: transparent; font-family: Calibri, sans-serif; font-size: 14.6667px;">https://twitter.com/IbdocMe</a><span style="font-size: 12pt;"> </span></div><div class="MsoNormal" style="background: white; color: #333333; font-family: Cambria; font-size: 12pt; margin: 0cm 0cm 0.0001pt;"><br /></div><div class="MsoNormal" style="background: white; color: #333333; font-family: Cambria; font-size: 12pt; margin: 0cm 0cm 0.0001pt;"><span lang="EN-US"><a href="http://www.calprotectin.co.uk/" style="color: #6699cc; text-decoration-line: none;"><span style="color: purple; font-family: Arial; font-size: 11pt;">www.calprotectin.co.uk</span></a></span><o:p></o:p></div><div class="MsoNormal" style="background: white; color: #333333; font-family: Cambria; font-size: 12pt; margin: 0cm 0cm 0.0001pt;"><br /></div><div class="MsoNormal" style="background: white; color: #333333; font-family: Cambria; font-size: 12pt; margin: 0cm 0cm 0.0001pt;"><span lang="EN-US"><a href="https://www.alphalabs.co.uk/diagnostic-products/faecal-testing/faecal-calprotectin-assay-range/calprotectin-home-testing" style="color: #6699cc; text-decoration-line: none;"><span style="color: purple; font-family: Arial; font-size: 10pt;">https://www.alphalabs.co.uk/diagnostic-products/faecal-testing/faecal-calprotectin-assay-range/calprotectin-home-testing</span></a></span><o:p></o:p></div><div class="MsoNormal" style="background-color: white; color: #333333; font-family: Cambria; font-size: 12pt; margin: 0cm 0cm 0.0001pt;"><br /></div><p class="MsoNormal" style="font-family: Calibri, sans-serif; font-size: 11pt; line-height: 15.6933px; margin: 0cm 0cm 8pt;"><br /></p><p class="MsoNormal" style="font-family: Calibri, sans-serif; font-size: 11pt; line-height: 15.6933px; margin: 0cm 0cm 8pt;"><br /></p><p class="MsoNormal" style="font-family: Calibri, sans-serif; font-size: 11pt; line-height: 15.6933px; margin: 0cm 0cm 8pt;"><br /><br /><o:p></o:p></p>IBdoc and mehttp://www.blogger.com/profile/04644405174471346212noreply@blogger.com0tag:blogger.com,1999:blog-4877694666061362817.post-76687001294882342102020-07-28T06:49:00.000-07:002020-07-28T06:49:06.604-07:00One more chronic illness to add to my tally of chronic illnesses<div class="MsoNormal" style="font-family: Cambria; font-size: 12pt; margin: 0cm 0cm 0.0001pt;">
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<span lang="EN-US" style="font-family: Arial;">It’s been a while since I last posted, the reason being it appears I have a brand-new chronic illness to add to my tally of chronic illnesses, shame we don’t get awards or a meeting with the Queen for our efforts. Anyway, I’m still waiting to be formally diagnosed but it looks like I have late onset asthma, which has thrown me for six and has huge implications for the medication I have to treat my Crohns.<o:p></o:p></span></div>
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<span lang="EN-US" style="font-family: Arial;">Around the beginning of lockdown I decided to see if I could improve my fatigue as well as trying to loose some weight by introducing an exercise regime as I have put on at least two stone since beginning the Vedo. “LOOSE TWO STONE, BUT YOU HAVE CROHNS DISEASE!!” I hear you shout, Well, due to having Crohns my whole adult life; I’ve always been underweight so it’s a very unusual and uncomfortable feeling being over weight. I keep catching myself in the mirror doing a double take.<o:p></o:p></span></div>
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<span lang="EN-US" style="font-family: Arial;">So back to my life changing exercise regime, for reference, when I say exercise regime what I actually mean is doing some actual exercise like the joggers you see in the park. Due to my increased waistline I barely managed to fit into my running shorts and T shirt, at this point I got the feeling my 15 year old son wasn’t to keen to been seen with me as he wanted to run at least 20m in front.<o:p></o:p></span></div>
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<span lang="EN-US" style="font-family: Arial;">Everything started in the right direction; I had the couch to 5k app, water bottle in hand and a son too embarrassed to be seen with me and my portly figure.<o:p></o:p></span></div>
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<span lang="EN-US" style="font-family: Arial;">It was within 10 minutes of running that I realised I was struggling to get my breath, I stopped a while and began running again, it was clear to me by that time that there was a problem with my breathing, I’d lost sight of my son who was running away into the distance, I found the nearest park bench and tried to regain my composure. The problem was, I couldn’t re-gain my composure, I could barely breathe.my son and eventually found me red-faced sat on the park bench.<o:p></o:p></span></div>
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<span lang="EN-US" style="font-family: Arial;">Several doctors, scans and x rays’ lung function tests, antibiotics, results, more tests, steroids and nurses later, my consultant wants to stop the vedo and I want to stop the world and get off. All I tried to achieve was a bit of exercise, why does everything have to be so debilitating and difficult with Crohn’s?<o:p></o:p></span></div>
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<span lang="EN-US" style="font-family: Arial;">But through all the ‘ups and downs’ of the investigations into my breathing problems, ive had one constant, one anchor of key knowledge to hold onto, an assertation that none of this is affecting the inflammation levels in my gut. Over this stressful period I used my IBDoc resulting in 2 test results of 38ug/u 86 ug/u over 6 weeks, which means my gut, is in good shape. So why stop the vedo?<o:p></o:p></span></div>
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<span lang="EN-US" style="font-family: Arial;">I’ve got an appointment. To be discussed. Armed with more knowledge than most. I’m sure it would help if more people could monitor their own calprotectin levels too. But for now, lets see if it helps me.<o:p></o:p></span></div>
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<span style="background-attachment: initial; background-clip: initial; background-image: initial; background-origin: initial; background-position: initial; background-repeat: initial; background-size: initial; color: #222222; font-family: Arial;">Follow me on Twitter </span><span lang="EN-US"><a href="https://www.blogger.com/twitter.com/ibdocMe" style="color: #6699cc; text-decoration-line: none;"><span style="background-attachment: initial; background-clip: initial; background-image: initial; background-origin: initial; background-position: initial; background-repeat: initial; background-size: initial; color: blue; font-family: Arial;">@ibdocMe</span></a></span><o:p></o:p></div>
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<span lang="EN-US"><a href="http://www.calprotectin.co.uk/" style="color: #6699cc; text-decoration-line: none;"><span style="color: purple; font-family: Arial; font-size: 11pt;">www.calprotectin.co.uk</span></a></span><o:p></o:p></div>
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<span lang="EN-US"><a href="https://www.alphalabs.co.uk/diagnostic-products/faecal-testing/faecal-calprotectin-assay-range/calprotectin-home-testing" style="color: #6699cc; text-decoration-line: none;"><span style="color: purple; font-family: Arial; font-size: 10pt;">https://www.alphalabs.co.uk/diagnostic-products/faecal-testing/faecal-calprotectin-assay-range/calprotectin-home-testing</span></a></span></div>
IBdoc and mehttp://www.blogger.com/profile/04644405174471346212noreply@blogger.com0tag:blogger.com,1999:blog-4877694666061362817.post-4642295105064737822020-05-12T04:26:00.002-07:002020-05-12T04:26:38.030-07:0028 Years of Lockdown<p class="MsoNormal" style="font-family: Cambria, serif; font-size: 12pt; margin: 0cm 0cm 0.0001pt;"><span lang="EN-US" style="color: #353535; font-family: Arial, sans-serif;">My own personal lockdown<o:p></o:p></span></p><p class="MsoNormal" style="font-family: Cambria, serif; font-size: 12pt; margin: 0cm 0cm 0.0001pt;"><span lang="EN-US" style="color: #353535; font-family: Arial, sans-serif;"> </span></p><p class="MsoNormal" style="font-family: Cambria, serif; font-size: 12pt; margin: 0cm 0cm 0.0001pt;"><span lang="EN-US" style="color: #353535; font-family: Arial, sans-serif;">My own personal lockdown didn’t begin at the start of April 2020; it started in August 1992, when I was first diagnosed with CD. I’ve been in and out of “lockdown” many times since in my 28 years with CD. So I’m well versed in what’s required to sit and wait it out.<o:p></o:p></span></p><p class="MsoNormal" style="font-family: Cambria, serif; font-size: 12pt; margin: 0cm 0cm 0.0001pt;"><span lang="EN-US" style="color: #353535; font-family: Arial, sans-serif;"> </span></p><p class="MsoNormal" style="font-family: Cambria, serif; font-size: 12pt; margin: 0cm 0cm 0.0001pt;"><span lang="EN-US" style="color: #353535; font-family: Arial, sans-serif;">The difference this time is that just about everyone worldwide is feeling a few of the emotions and suffering we chronically ill people experience on a daily basis. I don’t want to sound glib or come across as smug, as here in the UK 28,000 people have lost their lives to COVID19 so far.<o:p></o:p></span></p><p class="MsoNormal" style="font-family: Cambria, serif; font-size: 12pt; margin: 0cm 0cm 0.0001pt;"><span lang="EN-US" style="color: #353535; font-family: Arial, sans-serif;"> </span></p><p class="MsoNormal" style="font-family: Cambria, serif; font-size: 12pt; margin: 0cm 0cm 0.0001pt;"><span lang="EN-US" style="color: #353535; font-family: Arial, sans-serif;"> We all now have a shared experience of the suffering: not being able to meet up with friends, plan a holiday, worry about health, anxious about finances or eating out to name a few. The difference for the chronically ill is our suffering will not end when the lockdown is lifted, we will still be in the same situation as before lockdown, except this time the future is more uncertain. We have no idea what lifting the lockdown means for a person with a compromised immune system, it just adds anxiety on top of the daily anxiety we already feel.<o:p></o:p></span></p><p class="MsoNormal" style="font-family: Cambria, serif; font-size: 12pt; margin: 0cm 0cm 0.0001pt;"><span lang="EN-US" style="color: #353535; font-family: Arial, sans-serif;"> </span></p><p class="MsoNormal" style="font-family: Cambria, serif; font-size: 12pt; margin: 0cm 0cm 0.0001pt;"><span lang="EN-US" style="color: #353535; font-family: Arial, sans-serif;">To add to the anxiety, I have had to go to hospital amidst a global pandemic; to the heart of the beast if you will, for my usual monthly Vedo infusions. I have made the trip to hospital twice since lockdown and both times in all honesty it petrified me. I felt a general since of unease with the nurses and staff on the ward, and being asked to wear a face mask whist the infusions takes place makes it very real for me.<o:p></o:p></span></p><p class="MsoNormal" style="font-family: Cambria, serif; font-size: 12pt; margin: 0cm 0cm 0.0001pt;"><span lang="EN-US" style="color: #353535; font-family: Arial, sans-serif;"> </span></p><p class="MsoNormal" style="font-family: Cambria, serif; font-size: 12pt; margin: 0cm 0cm 0.0001pt;"><span lang="EN-US" style="color: #353535; font-family: Arial, sans-serif;">I do however, feel incredibly lucky for a few reasons; first, as chronically ill people living in the UK, we know just how selfless, understanding and professional our NHS staff is, from the Doctors to Nurses to ward clarkes and porters, they are in my experience incredible. So I will be clapping every Thursday evening, but the truth is I’ve been quietly clapping for them for the last 28 years.<o:p></o:p></span></p><p class="MsoNormal" style="font-family: Cambria, serif; font-size: 12pt; margin: 0cm 0cm 0.0001pt;"><span lang="EN-US" style="color: #353535; font-family: Arial, sans-serif;"> </span></p><p class="MsoNormal" style="font-family: Cambria, serif; font-size: 12pt; margin: 0cm 0cm 0.0001pt;"><span lang="EN-US" style="color: #353535; font-family: Arial, sans-serif;">I’m also incredibly lucky to be able to test my Calprotectin levels at home via IBDoc. If there are positives to come out of this awful pandemic is the doctor/patient relationship, as I’ve pointed out in my previous blogs we need to grab hold of the tech at our disposal, and use it to our advantage. Of course there is no comparison to meeting face to face with your GI but imagine the time, money and effort we can save using Skype, Zoom or Team sessions. Or implementing the use of home Calprotectin tests? As I said I’m lucky I can test Calprotectin at home. My last result using the IBDoc was 38 ug/g so zero anxieties and I’m not badgering the IBD nurse and going out of my mind with worry at every little twinge in my tummy.<o:p></o:p></span></p><p class="MsoNormal" style="font-family: Cambria, serif; font-size: 12pt; margin: 0cm 0cm 0.0001pt;"><span lang="EN-US" style="color: #353535; font-family: Arial, sans-serif;"> </span></p><p class="MsoNormal" style="font-family: Cambria, serif; font-size: 12pt; margin: 0cm 0cm 0.0001pt;"><span lang="EN-US" style="color: #353535; font-family: Arial, sans-serif;">I’m also so grateful to my wife, who without hesitation and putting her own safety at risk will wait in line at the supermarket then travel across town to pick up my prescription. </span></p><p class="MsoNormal" style="font-family: Cambria, serif; font-size: 12pt; margin: 0cm 0cm 0.0001pt;"><span lang="EN-US" style="color: #353535; font-family: Arial, sans-serif;"> </span></p><p class="MsoNormal" style="font-family: Cambria, serif; font-size: 12pt; margin: 0cm 0cm 0.0001pt;"><span lang="EN-US" style="color: #353535; font-family: Arial, sans-serif;">I don’t know what the future will be like in a post COVID world living with IBD. What I do hope is we can use this experience to be more understanding of the chronically ill, and our front-line workers, maybe being a little more kind to the people less well off then ourselves.<o:p></o:p></span></p><p class="MsoNormal" style="font-family: Cambria, serif; font-size: 12pt; margin: 0cm 0cm 0.0001pt;"><span lang="EN-US" style="color: #353535; font-family: Arial, sans-serif;"> </span></p><p class="MsoNormal" style="font-family: Cambria, serif; font-size: 12pt; margin: 0cm 0cm 0.0001pt;"><span lang="EN-US" style="color: #353535; font-family: Arial, sans-serif;">Stay safe.<o:p></o:p></span></p><p class="MsoNormal" style="font-family: Cambria, serif; font-size: 12pt; margin: 0cm 0cm 0.0001pt;"><span lang="EN-US" style="color: #353535; font-family: Arial, sans-serif;"><br /></span></p><div class="MsoNormal" style="background: white; color: #333333; font-family: Cambria; font-size: 12pt; margin: 0cm 0cm 0.0001pt;"><span style="background-attachment: initial; background-clip: initial; background-image: initial; background-origin: initial; background-position: initial; background-repeat: initial; background-size: initial; color: #222222; font-family: Arial;">Follow me on Twitter </span><span lang="EN-US"><a href="https://www.blogger.com/twitter.com/ibdocMe" style="color: #6699cc; text-decoration-line: none;"><span style="background-attachment: initial; background-clip: initial; background-image: initial; background-origin: initial; background-position: initial; background-repeat: initial; background-size: initial; color: blue; font-family: Arial;">@ibdocMe</span></a></span><o:p></o:p></div><div class="MsoNormal" style="background: white; color: #333333; font-family: Cambria; font-size: 12pt; margin: 0cm 0cm 0.0001pt;"><br /></div><div class="MsoNormal" style="background: white; color: #333333; font-family: Cambria; font-size: 12pt; margin: 0cm 0cm 0.0001pt;"><span lang="EN-US"><a href="http://www.calprotectin.co.uk/" style="color: #6699cc; text-decoration-line: none;"><span style="color: purple; font-family: Arial; font-size: 11pt;">www.calprotectin.co.uk</span></a></span><o:p></o:p></div><div class="MsoNormal" style="background: white; color: #333333; font-family: Cambria; font-size: 12pt; margin: 0cm 0cm 0.0001pt;"><br /></div><p class="MsoNormal" style="font-family: Cambria, serif; font-size: 12pt; margin: 0cm 0cm 0.0001pt;"><span lang="EN-US" style="color: #353535; font-family: Arial, sans-serif;"></span></p><div class="MsoNormal" style="background: white; color: #333333; font-family: Cambria; font-size: 12pt; margin: 0cm 0cm 0.0001pt;"><span lang="EN-US"><a href="https://www.alphalabs.co.uk/diagnostic-products/faecal-testing/faecal-calprotectin-assay-range/calprotectin-home-testing" style="color: #6699cc; text-decoration-line: none;"><span style="color: purple; font-family: Arial; font-size: 10pt;">https://www.alphalabs.co.uk/diagnostic-products/faecal-testing/faecal-calprotectin-assay-range/calprotectin-home-testing</span></a></span></div><p class="MsoNormal" style="font-family: Cambria, serif; font-size: 12pt; margin: 0cm 0cm 0.0001pt;"><span lang="EN-US" style="color: #353535; font-family: Arial, sans-serif;"> </span></p><p class="MsoNormal" style="font-family: Cambria, serif; font-size: 12pt; margin: 0cm 0cm 0.0001pt;"><span lang="EN-US" style="color: #353535; font-family: Arial, sans-serif;"> </span></p><p class="MsoNormal" style="font-family: Cambria, serif; font-size: 12pt; margin: 0cm 0cm 0.0001pt;"><span lang="EN-US" style="color: #353535; font-family: Arial, sans-serif;"> </span></p><p class="MsoNormal" style="font-family: Cambria, serif; font-size: 12pt; margin: 0cm 0cm 0.0001pt;"><span lang="EN-US" style="color: #353535; font-family: Arial, sans-serif;"> </span></p><p class="MsoNormal" style="font-family: Cambria, serif; font-size: 12pt; margin: 0cm 0cm 0.0001pt;"><span lang="EN-US" style="color: #353535; font-family: Arial, sans-serif;"> </span></p><p class="MsoNormal" style="font-family: Cambria, serif; font-size: 12pt; margin: 0cm 0cm 0.0001pt;"><span lang="EN-US" style="color: #353535; font-family: Arial, sans-serif;"> </span></p><p class="MsoNormal" style="font-family: Cambria, serif; font-size: 12pt; margin: 0cm 0cm 0.0001pt;"><span lang="EN-US" style="color: #353535; font-family: Arial, sans-serif;"> </span></p><p class="MsoNormal" style="font-family: Cambria, serif; font-size: 12pt; margin: 0cm 0cm 0.0001pt;"><span lang="EN-US" style="color: #353535; font-family: Arial, sans-serif;"> </span></p><p class="MsoNormal" style="font-family: Cambria, serif; font-size: 12pt; margin: 0cm 0cm 0.0001pt;"><span lang="EN-US" style="color: #353535; font-family: Arial, sans-serif;"> </span></p><p class="MsoNormal" style="font-family: Cambria, serif; font-size: 12pt; margin: 0cm 0cm 0.0001pt;"><span lang="EN-US" style="color: #353535; font-family: Arial, sans-serif;"> </span></p><p class="MsoNormal" style="font-family: Cambria, serif; font-size: 12pt; margin: 0cm 0cm 0.0001pt;"><span lang="EN-US" style="color: #353535; font-family: Arial, sans-serif;"> </span></p><p class="MsoNormal" style="font-family: Cambria, serif; font-size: 12pt; margin: 0cm 0cm 0.0001pt;"><span lang="EN-US" style="color: #353535; font-family: Arial, sans-serif;"> </span></p><p class="MsoNormal" style="font-family: Cambria, serif; font-size: 12pt; margin: 0cm 0cm 0.0001pt;"><span lang="EN-US" style="color: #353535; font-family: Arial, sans-serif;"> </span></p><p class="MsoNormal" style="font-family: Cambria, serif; font-size: 12pt; margin: 0cm 0cm 0.0001pt;"><span lang="EN-US" style="font-family: Arial, sans-serif;"> </span></p>IBdoc and mehttp://www.blogger.com/profile/04644405174471346212noreply@blogger.com0tag:blogger.com,1999:blog-4877694666061362817.post-15518845875789952282020-03-09T04:23:00.002-07:002020-03-09T04:23:29.620-07:00The good the bad and the ugly<div class="MsoNormal" style="background: white; font-family: Cambria; font-size: 12pt; margin: 0cm 0cm 0.0001pt;">
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<span style="color: #222222; font-family: Arial;">The good new first. Last year was a good year, an actual good year!!! I felt generally well enough to actually enjoy living life, as a family we were lucky enough to go on several mini city breaks including a week in the Scottish highlands. The consequences of enjoying life and sampling foods on holiday meant my Calprotectin results have not been under 100ug/g for that year, so how bad were they?<o:p></o:p></span></div>
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<span style="color: #222222; font-family: Arial;">Well, significantly. I carried the holiday spirit with me into day-to-day life, nibble some chocolate here, couldn’t resist some butter on my rice cakes there, and the odd Saturday night takeaway.<o:p></o:p></span></div>
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<span style="color: #222222; font-family: Arial;">I know that Vedolizumab has its limitations, it doesn’t work for me in isolation - I have the “diet” too. The Calprotectin level doesn’t shoot right up anymore, by right up I mean over 450 ug/g When those higher values actually start presenting physically, ulcers, bloating, pains and tightness in my abdomen, well I just reign it in, get back on that diet, strictly adhere to it for a week or so and then safely and happily confirm I’m back on top of things. Then start ‘slipping’ off the diet again and the cheating creeps up. And so the cycle goes on. I always feel a huge sense of guilt when I have cheated on the diet, and anyway, consecutive days of cheating makes me feel physically dreadful, I believe that’s down to the food intolerances rather than the Crohns. So I’ve been in this boom and bust cycle for the last eight years.<o:p></o:p></span></div>
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<span style="color: #222222; font-family: Arial;">Which leads me to the million-dollar question! What a positive Calprotectin result actually looks like in terms of inflammation, ulceration and structuring in the small bowel. Here’s the bad news. I had the opportunity to understand those IBDoc results I have been capturing for the last two years as I had the dreaded colonoscopy in December of last year. A couple days before the colonoscopy I used an IBDoc kit to measure my Calprotectin (of course why wouldn’t I) the result of that test was 360ug/g. So what does the inside of my small bowel actually look like, I hear you shout!!<o:p></o:p></span></div>
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<span style="color: #222222; font-family: Arial;">Ok, so I received the follow up letter from my consultant out lining my recent colonoscopy. In the letter it states that my small bowel showed signs of mild ulceration and the biopsies and blood work taken also showed signs of inflammation. In the letter my consultant was keen for me to switch from Vedolizumab and begin a new medication called Sterala. Interestingly I wasn’t shocked by the results of the colonoscopy, as I have year’s worth of data from IBDoc that confirmed the colonoscopy results. I was of course disappointed that I would have to begin another medication with all the side effects, loading doses etc.<o:p></o:p></span></div>
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<span lang="EN-US" style="color: #353535; font-family: Arial;">So armed with my research on Sterala and of course my agenda for the meeting I was ready to go, if not a little nervous, but to be honest I’m always nervous when I see my consultant. I’d based my agenda notes and questions around me transferring from Vedolizumab to Sterala, however, in the meeting with my consultant I was surprised he was reluctant to switch my medication as he could clearly see I’d gained weight - I wasn’t suffering with urgency, bowel pain and no extra intestinal manifestations. My consultant asked me how I was feeling on a day-to-day basis; I told him that I feel good; in fact I’ve probably felt the best since my flare up in 2010. Based on that and after a little head scratching he suggested we go for another four months on the Vedoluzimab with the option of switching to Sterala if my symptoms present.<o:p></o:p></span></div>
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<span lang="EN-US" style="color: #353535; font-family: Arial;">I think what today has taught me is, there is no running away for this disease, no short cuts or miracle cures, I know I have the ability to control my Crohns with diet and Vedoluzimab and lucky enough to be using IBDoc to monitor my inflammation, I simply need to redouble my efforts and not be tempted by foods I know will be detrimental, which is easier said than done.<o:p></o:p></span></div>
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<span style="background-attachment: initial; background-clip: initial; background-image: initial; background-origin: initial; background-position: initial; background-repeat: initial; background-size: initial; color: #222222; font-family: Arial;">Follow me on Twitter </span><span lang="EN-US"><a href="https://www.blogger.com/twitter.com/ibdocMe"><span style="background-attachment: initial; background-clip: initial; background-image: initial; background-origin: initial; background-position: initial; background-repeat: initial; background-size: initial; color: blue; font-family: Arial; text-decoration-line: none;">@ibdocMe</span></a></span><span style="color: #333333;"><o:p></o:p></span></div>
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<span lang="EN-US"><a href="http://www.calprotectin.co.uk/"><span style="color: purple; font-family: Arial; font-size: 11pt; text-decoration-line: none;">www.calprotectin.co.uk</span></a></span><span style="color: #333333;"><o:p></o:p></span></div>
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IBdoc and mehttp://www.blogger.com/profile/04644405174471346212noreply@blogger.com0tag:blogger.com,1999:blog-4877694666061362817.post-26714704422324278692019-12-04T01:22:00.000-08:002019-12-04T01:22:09.235-08:00The drugs do work
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<span lang="EN-US" style="color: #333333; font-family: Arial; font-size: 13.5pt; mso-bidi-font-family: Arial; mso-fareast-font-family: "Times New Roman";">Back in 2017 I
wrote an impassioned article for Alpha Laboratories, Autumn Winter addition of
Perspective, which was published with the headline <i>‘</i></span><i><span style="color: #333333; font-family: Arial; font-size: 14.0pt; mso-ansi-language: EN-GB; mso-bidi-font-family: Arial; mso-fareast-font-family: "Times New Roman";">IBDoc will
change people’s lives but only, if patients can monitor instant results’</span></i><i><span lang="EN-US" style="color: #333333; font-family: Arial; font-size: 13.5pt; mso-bidi-font-family: Arial; mso-fareast-font-family: "Times New Roman";">.</span></i><span lang="EN-US" style="color: #333333; font-family: Arial; font-size: 13.5pt; mso-bidi-font-family: Arial; mso-fareast-font-family: "Times New Roman";"> I had been
prompted to write the article on hearing of the inflammatory detection system
via Calprotectin being developed as a home testing kit called IB<i>Doc. </i><span style="mso-bidi-font-style: italic;">If you follow my blog you’ll know that I
have been successfully using </span>IB<i>Doc </i><span style="mso-bidi-font-style: italic;">since then.<o:p></o:p></span></span></div>
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it and to write about my experiences of using it in the field.<o:p></o:p></span></span></div>
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<br /></div>
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<span lang="EN-US" style="color: #333333; font-family: Arial; font-size: 13.5pt; mso-bidi-font-family: Arial; mso-bidi-font-style: italic; mso-fareast-font-family: "Times New Roman";">In my previous blogs, I’ve expressed that </span><span lang="EN-US" style="color: #333333; font-family: Arial; font-size: 13.5pt; mso-bidi-font-family: Arial; mso-fareast-font-family: "Times New Roman";">IB<i>Doc</i><span style="mso-bidi-font-style: italic;"> is one part of the tool kit I use to deal with my Crohns disease. It’s
at the centre of my Crohns universe with all the other tools orbiting around
it, making them more than the sum of their parts. IB<i>Doc is</i> a consistent
level control which gives me a snapshot of where I am at any one time.<o:p></o:p></span></span></div>
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<span lang="EN-US" style="color: #333333; font-family: Arial; font-size: 13.5pt; mso-bidi-font-family: Arial; mso-fareast-font-family: "Times New Roman";"><span style="mso-bidi-font-style: italic;"><br /></span></span></div>
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small-bowel, the results from the MRI came back as clear, zero inflammation.
Out of interest I did a test using IB<i>D</i>oc on the morning of the scan, the
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<span lang="EN-US" style="color: #333333; font-family: Arial; font-size: 13.5pt; mso-bidi-font-family: Arial; mso-bidi-font-style: italic; mso-fareast-font-family: "Times New Roman";">For reference I have been having
monthly infusion of Vedolizumab since November 2016.Vedolizumab </span><span style="background: white; color: #3c3c3c; font-family: Arial; font-size: 14.0pt; mso-ansi-language: EN-GB; mso-bidi-font-family: Arial; mso-fareast-font-family: "Times New Roman";">works by preventing an excess of white blood cells from entering into
the GI tract. This helps to control inflammation and symptoms of ulcerative
colitis and Crohns. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="background: white; color: #3c3c3c; font-family: Arial; font-size: 14.0pt; mso-ansi-language: EN-GB; mso-bidi-font-family: Arial; mso-fareast-font-family: "Times New Roman";">So what’s the conclusion? Well, armed with two years
of</span><span style="color: #333333; font-family: Arial; font-size: 13.5pt; mso-bidi-font-family: Arial; mso-fareast-font-family: "Times New Roman";"> <span lang="EN-US">IB<i>Doc</i></span></span><span lang="EN-US" style="background: white; color: #3c3c3c; font-family: Arial; font-size: 14.0pt; mso-ansi-language: EN-GB; mso-bidi-font-family: Arial; mso-fareast-font-family: "Times New Roman";"> </span><span style="background: white; color: #3c3c3c; font-family: Arial; font-size: 14.0pt; mso-ansi-language: EN-GB; mso-bidi-font-family: Arial; mso-fareast-font-family: "Times New Roman";">data, I know, undoubtedly
that the monthly Vedolizumab infusions keep my Calprotectin levels below 100 ug/g.
When I do go off diet, on holiday as an example, eating what I want (I know, how
dare I) the Calprotectin levels will increase up to 400ug/g.<span style="mso-spacerun: yes;"> </span>Pre Vedolizumab my Calprotectin levels would
sometimes peak around 1000 ug/g.<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="background: white; color: #3c3c3c; font-family: Arial; font-size: 14.0pt; mso-ansi-language: EN-GB; mso-bidi-font-family: Arial; mso-fareast-font-family: "Times New Roman";">And that’s why I can safely say. “The drugs do work”<o:p></o:p></span></div>
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<br /></div>
<div class="MsoNormal">
<span style="background: white; color: #222222; font-family: Arial; font-size: 14.0pt; mso-ansi-language: EN-GB; mso-bidi-font-family: Arial; mso-fareast-font-family: "Times New Roman";">Follow me on Twitter </span><span lang="EN-US"><a href="https://www.blogger.com/twitter.com/ibdocMe"><span lang="EN-US" style="background: white; color: blue; font-family: Arial; mso-ansi-language: EN-GB; mso-bidi-font-family: Arial; mso-fareast-font-family: "Times New Roman";"><span lang="EN-US">@ibdocMe</span></span></a></span><span style="font-family: "Times New Roman"; font-size: 10.0pt; mso-ansi-language: EN-GB; mso-fareast-font-family: "Times New Roman";"><o:p></o:p></span></div>
<div class="MsoNormal">
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<div class="MsoNormal" style="background: white; mso-outline-level: 3;">
<span lang="EN-US"><a href="http://www.calprotectin.co.uk/"><span lang="EN-US" style="color: purple; font-family: Arial; font-size: 11.0pt; mso-ansi-language: EN-GB; mso-fareast-font-family: "Times New Roman";"><span lang="EN-US">www.calprotectin.co.uk</span></span></a></span><b><span style="color: #333333; font-family: "Times New Roman"; font-size: 13.5pt; mso-ansi-language: EN-GB; mso-fareast-font-family: "Times New Roman";"><o:p></o:p></span></b></div>
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<div class="MsoNormal" style="background: white; mso-outline-level: 3;">
<span lang="EN-US"><a href="https://www.alphalabs.co.uk/diagnostic-products/faecal-testing/faecal-calprotectin-assay-range/calprotectin-home-testing"><span lang="EN-US" style="color: purple; font-family: Arial; font-size: 10.0pt; mso-ansi-language: EN-GB; mso-fareast-font-family: "Times New Roman";"><span lang="EN-US">https://www.alphalabs.co.uk/diagnostic-products/faecal-testing/faecal-calprotectin-assay-range/calprotectin-home-testing</span></span></a></span><b><span style="color: #333333; font-family: "Times New Roman"; font-size: 13.5pt; mso-ansi-language: EN-GB; mso-fareast-font-family: "Times New Roman";"><o:p></o:p></span></b></div>
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<!--EndFragment--><br />IBdoc and mehttp://www.blogger.com/profile/04644405174471346212noreply@blogger.com1tag:blogger.com,1999:blog-4877694666061362817.post-2258151903187630472019-09-18T07:12:00.000-07:002019-09-18T07:12:15.362-07:00The one question a Crohn’s sufferer wants to hear
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<!--StartFragment-->
<br />
<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;">
<br /></div>
<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;">
<span lang="EN-US" style="color: #353535; font-family: Arial; mso-bidi-font-family: Arial;">We know that living with IBD is a challenge to say the
least; just a few of the symptoms that manifest are, weight loss during
flare-ups and gaining it all back when in remission, running to the toilet every
two minutes, crippling fatigue and intense pain; lets face it the list can be
endless.<o:p></o:p></span></div>
<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;">
<br /></div>
<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;">
<span lang="EN-US" style="color: #353535; font-family: Arial; mso-bidi-font-family: Arial;">So certain comments - such as those that focus on weight, looks,
diet and perceived attitudes can be really upsetting and hurtful. We have to calmly
educate our friends and family as to why we didn’t attend that wedding or
couldn’t make our nephews 21<sup>st</sup>; here are a few examples I have encountered
in my 28 years of having CD.<o:p></o:p></span></div>
<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;">
<br /></div>
<div class="MsoNormal" style="background: white; vertical-align: baseline;">
<b style="mso-bidi-font-weight: normal;"><span style="color: black; font-family: Arial; mso-ansi-language: EN-GB; mso-bidi-font-family: Arial;">You looked fine last week, what’s
the problem?</span></b><span style="color: black; font-family: Arial; mso-ansi-language: EN-GB; mso-bidi-font-family: Arial;"><o:p></o:p></span></div>
<div class="MsoNormal" style="background: white; vertical-align: baseline;">
<span style="color: black; font-family: Arial; mso-ansi-language: EN-GB; mso-bidi-font-family: Arial;">Despite my illness I still want to lead as normal a life as possible. It
is often a real challenge to do the things that healthy people take for
granted like, going on holiday, meeting up with friends for a drink and catch
up, or going for a long walk….. you get the idea? Even when I feel moderately
well it’s still a challenge to do these activities, but I guess most people
like myself with IBD just put on a brave face and get on with it. I wouldn’t expect
my friends or family to know that I’m dealing with terrible fatigue, or I’d
been up most of the night on the toilet but when I point it out I don’t want to
have to discuss the point.<o:p></o:p></span></div>
<div class="MsoNormal" style="background: white; vertical-align: baseline;">
<br /></div>
<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;">
<b><span lang="EN-US" style="color: #353535; font-family: Arial; mso-bidi-font-family: Arial;">I wish I could eat anything and stay slim<o:p></o:p></span></b></div>
<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;">
<span lang="EN-US" style="color: #353535; font-family: Arial; mso-bidi-font-family: Arial;">I’ve had this said to me many times in my 28 years of CD.
Seeing yourself literally fading away when peering into the mirror during a
flare can be devastating so this comment particularly hurts as weight loss is
often due to flare-ups that cause severe abdominal pain with bloody diarrhoea
that can mean spending most of the time in the bathroom. <o:p></o:p></span></div>
<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;">
<br /></div>
<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;">
<b><span lang="EN-US" style="color: #353535; font-family: Arial; mso-bidi-font-family: Arial;">My friend has CD and he’s doing great<o:p></o:p></span></b></div>
<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;">
<span lang="EN-US" style="color: #353535; font-family: Arial; mso-bidi-font-family: Arial;">I hear this one often, its usually followed by me being
told that their friend with CD has just completed a marathon. Unfortunately,
IBD affects everyone in a completely different way in its severity. It also
depends where the inflammation presents, and what medication you are on or if
you have had previous surgeries.<o:p></o:p></span></div>
<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;">
<br /></div>
<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;">
<b><span lang="EN-US" style="color: #353535; font-family: Arial; mso-bidi-font-family: Arial;">Why are you so tired all the time?<o:p></o:p></span></b></div>
<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;">
<span lang="EN-US" style="color: #353535; font-family: Arial; mso-bidi-font-family: Arial;">Its wrong to compare feeling tired after work and having
chronic fatigue due to CD. There are many reasons why IBD effects your energy levels,
this can be due to low iron or B12, having limited sleep due to visiting the
toilet all night. <b><o:p></o:p></b></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<b><span lang="EN-US" style="color: #353535; font-family: Arial; mso-bidi-font-family: Arial;">My friend has CD and she can drink alcohol.</span></b><span lang="EN-US" style="color: #353535; font-family: Arial; mso-bidi-font-family: Arial;"><o:p></o:p></span></div>
<div class="MsoNormal">
<span lang="EN-US" style="color: #353535; font-family: Arial; mso-bidi-font-family: Arial;">Maybe it’s a UK thing? But I find people can get very suspicious
of folk that don’t drink alcohol. For me, alcohol is a complete no go, it gives
me instant diarrhoea and makes me feel dreadful; on the other hand I am a cheap
date as I can get extremely drunk from one alcoholic beverage.<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;">
<b><span lang="EN-US" style="color: #353535; font-family: Arial; mso-bidi-font-family: Arial;">My friend is on the blah, blah diet and he is now cured!<o:p></o:p></span></b></div>
<div class="MsoNormal">
<span lang="EN-US" style="color: #353535; font-family: Arial; mso-bidi-font-family: Arial;">If I had a penny for every time I’ve heard this one…first
up diet can help prevent flare ups and keep you in remission, I know as I’ve
been fortunate to find a diet that keeps me in remission (the LOFFLEX for
reference). However, it’s incredibly difficult to find the right diet, as there
are so many to choose from: the IBD-AID, lowfodmaps the SCD, keto, to name just
a few. And for reference there is no cure to date for IBD. But some diets
definitely keep the inflammation markers down. I know this because I’ve got
access to IBDoc – so for example, I know that egg actively increases my
inflammation and although wheat makes me feel terrible, it doesn’t necessarily
increase my inflammation. I also know not to say ‘ well I can have rice cakes’
so you must be able to as well. Its such a unique disease, with entirely
different responses the only question I want to hear is – do you think home
testing will become the standard way to manage Crohns – yes I would shout with
glee – yes ask me that question – yes please. Oh and can we share the data,
look at the worldwide patterns? See if there is any standard can do’s and don’ts
but I'm convinced we’ll get there.<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-US" style="color: #353535; font-family: Arial; mso-bidi-font-family: Arial;">I guess people never intend to offend, upset or in anyway
make you feel worse than you’re already feeling so I never get upset with
people, but share my blog with people that have asked you these questions in
the past and maybe just maybe we can start gently getting our point across?<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<br /></div>
<!--EndFragment--><br />IBdoc and mehttp://www.blogger.com/profile/04644405174471346212noreply@blogger.com0tag:blogger.com,1999:blog-4877694666061362817.post-41112243230915300302019-08-05T12:00:00.001-07:002019-08-05T12:00:57.690-07:00Reset and rethink
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<span lang="EN-US" style="font-family: Arial; font-size: 14.0pt;">I
have been waiting patiently since the beginning of this year to write this
blog, although on refection I’ve been waiting ten agonizing years to write
this. <o:p></o:p></span></div>
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<br /></div>
<div class="MsoNormal">
<span lang="EN-US" style="font-family: Arial; font-size: 14.0pt;">August
28<sup>th</sup> 2009 was the last time I felt even remotely healthy. The day
after and up until January this year I have suffered daily from debilitating brain
fog and crippling fatigue, both </span><span lang="EN-US" style="background: white; color: black; font-family: Arial; font-size: 14.0pt; mso-bidi-font-family: Arial; mso-fareast-font-family: "Times New Roman";">extra-intestinal manifestations of
inflammatory bowel disease. T</span><span lang="EN-US" style="font-family: Arial; font-size: 14.0pt;">hese two symptoms had been so severe in their relentlessness
that I had to give up the work I loved as clients ceased to call - knowing I
couldn’t commit to completing projects. I lost touch with dear friends as I reluctantly
stopped returning their calls; the effect being my social life came to a slow
and lumbering halt. If I’m honest I ceased to enjoy socializing many years ago as
the brain fog made social interactions painfully awkward, which in turn led me
to become socially anxious, so of course I found myself withdrawing. <o:p></o:p></span></div>
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<br /></div>
<div class="MsoNormal">
<span lang="EN-US" style="font-family: Arial; font-size: 14.0pt;">My
symptoms had stayed unrelenting up until the beginning of this year when I was referred
to a consultant neurologist after a period of extreme dizziness and fatigue
that left me bed ridden. I bore little hope of progress from the costly,
private consultation as most of the research regarding brain and the gut were positioned
around dysfunctional digestion (IBD, SIBO, gut fermentation). However, the
consultant immediately asked me a series of intriguing questions:<o:p></o:p></span></div>
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<span lang="EN-US" style="font-family: Arial; font-size: 14.0pt;">Do
I sometime crave carbs?<o:p></o:p></span></div>
<div class="MsoNormal">
<span lang="EN-US" style="font-family: Arial; font-size: 14.0pt;">Do
I have ‘undeserved’ hang overs from small amounts of alcohol? Am I constantly
thirsty?…………..<o:p></o:p></span></div>
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<span lang="EN-US" style="font-family: Arial; font-size: 14.0pt;">The
consultant’s conclusion was I have symptoms of migraine without the head aches.
He has observed before with IBD. Who knew?<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-US" style="font-family: Arial; font-size: 14.0pt;">The
consultant’s protocol was simple for me to implement, I was to: <o:p></o:p></span></div>
<div class="MsoNormal">
<span lang="EN-US" style="font-family: Arial; font-size: 14.0pt;">Consume
3 litres of water daily<o:p></o:p></span></div>
<div class="MsoNormal">
<span lang="EN-US" style="font-family: Arial; font-size: 14.0pt;">Avoid
all caffeine<o:p></o:p></span></div>
<div class="MsoNormal">
<span lang="EN-US" style="font-family: Arial; font-size: 14.0pt;">Avoided
all chocolate <o:p></o:p></span></div>
<div class="MsoNormal">
<span lang="EN-US" style="font-family: Arial; font-size: 14.0pt;">Reduce
carbs and sugars.<o:p></o:p></span></div>
<div class="MsoNormal">
<span lang="EN-US" style="font-family: Arial; font-size: 14.0pt;">Take
75mg pregablin daily<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-US" style="font-family: Arial; font-size: 14.0pt;">So
with some reluctance I began the protocol and at first I didn’t notice any significant
improvements. But slow and steady wins the race. It seems to be working. Not
because I feel all of a sudden well, its like watching your children grow up,
other people observe it more starkly as they have periods without seeing them.
But my wife will say – ‘are you sure we can’t go, not even for an hour? Are you
sure you’re too poorly cos you actually seem ok this week?’ and give me a
‘gentle’ nudge in the right direction by challenging my fixed mindset. So when
I observe my activity, actually I am in work more, I am writing music again, I
am actually going (and enjoying) nights out, I even made it to a wedding. So something
must be right. But its hard to re-set and change your mindset after ten years from
‘I can’t’ to ‘well maybe I could’… and I’m not promising plain sailing. Its not
perfect and I have to force myself out of the comfort zone, recalibrate,
re-think the possible and be totally grateful that I have the support,
education and where-with-all to be able to find solutions to my ill-health… but
that’s another subject matter. <o:p></o:p></span></div>
<div class="MsoNormal">
<span lang="EN-US" style="font-family: Arial; font-size: 14.0pt;">For
now I’ll concentrate on a growth mindset as opposed to fixing myself in the
land of the sick and see where we might go.<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<br /></div>
<!--EndFragment--><br />IBdoc and mehttp://www.blogger.com/profile/04644405174471346212noreply@blogger.com0tag:blogger.com,1999:blog-4877694666061362817.post-48097312989423312772019-06-25T04:41:00.000-07:002019-06-25T04:41:16.396-07:00It’s My Life
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<span style="font-family: Arial; mso-ansi-language: EN-GB;">You know that feeling when you realise the iconic
heroes from your youth have died or were much older than you ever thought they
were…?<o:p></o:p></span></div>
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<span style="font-family: Arial; mso-ansi-language: EN-GB;">This is how I felt when I heard the news that Mark
Hollis, lead singer of Talk Talk, (of hits including ‘it’s my life’) met a
premature death in February this year.<o:p></o:p></span></div>
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<br /></div>
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<span style="font-family: Arial; mso-ansi-language: EN-GB;">I was transported back to the cafeteria of a London recording
studio; a hopeful ‘Manchester’ wannabe on a tour bus of ill-fated attempts at
fame. My teenage band and me had secured a recording contract with a
prestigious major record label and thought we’d made it when we were sharing
the same canteen as Talk Talk.<o:p></o:p></span></div>
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<br /></div>
<div class="MsoNormal" style="background: white;">
<span style="font-family: Arial; mso-ansi-language: EN-GB;">Alas, fame and fortune wasn’t to strike, but Crohns
disease was. <o:p></o:p></span></div>
<div class="MsoNormal" style="background: white;">
<span style="font-family: Arial; mso-ansi-language: EN-GB;">I’ve battled - you’ve read the blog. <o:p></o:p></span></div>
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<span style="font-family: Arial; mso-ansi-language: EN-GB;">I’ve been angry - haven’t we all?<o:p></o:p></span></div>
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<span style="font-family: Arial; mso-ansi-language: EN-GB;">And now I’m ‘managed’ it’s a pain -sometimes quite
literally.<o:p></o:p></span></div>
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<br /></div>
<div class="MsoNormal" style="background: white;">
<span style="font-family: Arial; mso-ansi-language: EN-GB;">I was young and free and jumping on tour buses and
travelling the world and eating pretty much what I wanted, when I wanted. However,
a hemi colectomy and a small bowel resection later travelling now is altogether
a different matter:<o:p></o:p></span></div>
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<br /></div>
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<span style="font-family: Arial; mso-ansi-language: EN-GB;">As
an example, early in 2014 I was completely med free and following the lofflex
diet to manage my CD. As a family we decided to go to Portugal for a well-earned
rest. This was the first time out of the country for me using diet alone to
manage my CD, so I was incredibly diligent when it came to the food I would
eat. At that stage of the diet, I could only eat chicken, rice and carrots, so the
thought of travelling filled me with anxiety.<o:p></o:p></span></div>
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<br /></div>
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<span style="background: white; color: #222222; font-family: Arial; mso-ansi-language: EN-GB; mso-bidi-font-family: Arial; mso-fareast-font-family: "Times New Roman";">I decided rather than eat the airport and airline food I would take a
flask of my own food. In order to do that I knew I had to get a doctors letter.
So with doctor’s letter in hand myself and my family went off to the airport
looking forward to our holiday together. On arrival at the airport it was the
usual summer get away chaos, customs officers were moving thousands of people
at a time through the gates; when it came to my turn I obviously took the flask
out of the bag then an officer came over asked me to open the flask I gave him
the doctors letter. The letter was discussed with <span style="mso-spacerun: yes;"> </span>his supervisor , and as this conversation
between customs officers continued I could see my wife and kids being ushered
through to the gate as our plane was due to take off. By this point my anxiety
was peaking. The officers eventually gave me back my flask of now lukewarm
chicken rice and I boarded the plane… not a great start to our holiday.<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal" style="background: white;">
<span style="background: white; color: #222222; font-family: Arial; mso-ansi-language: EN-GB; mso-bidi-font-family: Arial; mso-fareast-font-family: "Times New Roman";">On arrival at the
apartment I immediately checked out the kitchen facilities, which were really
no better than a camping stove with minimal pots and pans for me to cook my
chicken and rice on. Needless to say it wasn’t a particularly relaxing holiday
for myself as I was constantly thinking of the food I needed to prepare as well
as the return leg of the holiday. I did learn from that first holiday</span><span style="font-family: Arial; mso-ansi-language: EN-GB;">, but what you gonna do?
Limit your horizons? Yep done that. Or take mini breaks now and then and go
‘wild’ with a croissant or a slice of cheese. So I’m currently doing the
latter. This year I have had a couple of days in a camping pod, a city break
and a self-catering haven in the Yorkshire Dales all with the family. I am of
course extremely lucky as I can check my inflammation using IBDoc whilst I am
away to see how bad the damage is and then spend the next few weeks getting it
back on track.<o:p></o:p></span></div>
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<br /></div>
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<span style="font-family: Arial; mso-ansi-language: EN-GB;">Some people choose really restrictive diets for weight
or on principle for example as vegans, and I’m certain they come across as many
hurdles as I do. But I guess it’s because it’s their choice. Maybe that’s why I
find a restrictive diet so hard - I didn’t choose it. I didn’t choose it but it
is indeed my life. So if I can manage the risk, at least I can live it.<o:p></o:p></span></div>
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<br /></div>
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<br /></div>
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<br /></div>
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<br /></div>
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<br /></div>
<div class="MsoNormal" style="background: white;">
<br /></div>
<div class="MsoNormal">
<br /></div>
<!--EndFragment--><br />IBdoc and mehttp://www.blogger.com/profile/04644405174471346212noreply@blogger.com0tag:blogger.com,1999:blog-4877694666061362817.post-34855653640449394702019-05-01T11:43:00.002-07:002019-05-01T11:43:36.674-07:00Down the rabbit hole anyone?
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<span style="color: #666666; font-family: Arial; font-size: 13.0pt;">In this months blog I wanted to focus on the
many Crohns forums and discussion groups, and how we can fall in to the rabbit
hole of information, misinformation, and personal opinions.<o:p></o:p></span></div>
<div style="background: white; line-height: 20.5pt; margin-bottom: 18.0pt; margin-left: 0cm; margin-right: 0cm; margin-top: 0cm;">
<span style="color: #666666; font-family: Arial; font-size: 13.0pt;">With chronic illness comes the need for
answers, with the advent of connectivity we can sometimes find ourselves
overwhelmed with the sheer amount of information out there. In the past (pre
internet) one had to be content with the 20 minute appointment with our
consultants, or maybe a trip to the library. However, we now find ourselves
with multiple sources of information at hand, that being the online forums and
groups discussions. Over the years I have been a member of at least twenty Crohns
forums and discussion groups and at times found myself spending hours at a time
sliding further into the rabbit hole. <o:p></o:p></span></div>
<div style="background: white; line-height: 20.5pt; margin-bottom: 18.0pt; margin-left: 0cm; margin-right: 0cm; margin-top: 0cm;">
<span style="color: #666666; font-family: Arial; font-size: 13.0pt;">The positives and negatives of online
forums is that anyone can post anything, no matter how accurate, insightful or
reasonable it may be. Moreover, simply posting a comment gives it a form of
credibility, with even the most compiling comment fading into obscurity as
additional comments accrue on the topic. <o:p></o:p></span></div>
<div style="background: white; line-height: 20.5pt; margin-bottom: 18.0pt; margin-left: 0cm; margin-right: 0cm; margin-top: 18.0pt;">
<span style="color: #666666; font-family: Arial; font-size: 13.0pt;">You will also find that some questions are
asked over and over -- perhaps only a month or two apart -- each time, no
doubt, by someone new to the forum. Annoyed readers scold that you should
review prior topics before adding your own post. I wouldn't think to do so and
I don't fault others for failing to search history. People want an answer to
their own question rather than someone else's. <o:p></o:p></span></div>
<div style="background: white; line-height: 20.5pt; margin-bottom: 18.0pt; margin-left: 0cm; margin-right: 0cm; margin-top: 0cm;">
<span style="color: #666666; font-family: Arial; font-size: 13.0pt;">I find myself concerned with posts I read from
members on certain forums who post with the authority of a GI but have the
credentials of a shop assistant. As an example I followed a discussion regarding
diet and IBD, the thread began with a newly diagnosed member asking if diet had
any impact on their IBD. Then came the reply from the admin of the group who stated,
Diet has absolutely no bearing on the status of IBD, he even attached a study
to back up his claims. If you’re a regular follower of this blog, you will know
my entire and most successful approach to dealing with CD is diet! So I was interested
to read the paper <o:p></o:p></span></div>
<div style="background: white; line-height: 20.5pt; margin-bottom: 18.0pt; margin-left: 0cm; margin-right: 0cm; margin-top: 0cm;">
<span style="color: #666666; font-family: Arial; font-size: 13.0pt;">The paper was flawed in many ways; firstly it
was out of date with current thinking regarding diet and IBD. The study was a
small cohort of subjects who tried the SCD diet for only three months and of
course the outcomes were unsuccessful. As we now know diet plays a massive role
in IBD;as a veteran of CD my concerns with this thread like many threads are
they are simply not accurate, but posted with confidence and a paper to back it
up immediately gives it credibility. <o:p></o:p></span></div>
<div style="background: white; line-height: 20.5pt; margin-bottom: 18.0pt; margin-left: 0cm; margin-right: 0cm; margin-top: 0cm;">
<span style="color: #666666; font-family: Arial; font-size: 13.0pt;">Another example I came across recently was a
thread discussing Calprotectin levels, a subject close to my heart!! The thread
discussion was basically that one couldn’t rely on the results of a faecal
Calprotectin test because it’s not accurate enough? This is of course totally
wrong and the implications of the discussion could discourage CD patients from
asking for the test and not feeling confident that the results are accurate. I
don’t want to get evangelistic about IBDoc, as you know I find it a remarkable
product. But these kinds of threads can be unsettling to an already vulnerable
person.<o:p></o:p></span></div>
<div style="background: white; line-height: 20.5pt; margin-bottom: 18.0pt; margin-left: 0cm; margin-right: 0cm; margin-top: 18.0pt;">
<span style="color: #666666; font-family: Arial; font-size: 13.0pt;">When used correctly forums can help with the
isolation of chronic illness you can connect with other suffers and share ones
own experience, also they can offer valuable recourses and research papers. So
my advice is to research any claim of treatment, or cure with hard evidence.
Look for peer-reviewed papers on the subject, and get a general over view of
the forums posts and attitudes. Hopefully this way you will avoid “ going down
the rabbit hole”</span></div>
<h3 style="background: white; margin-bottom: .0001pt; margin: 0cm;">
<a href="http://www.calprotectin.co.uk/"><span style="color: purple; font-family: Arial; font-size: 11.0pt; font-weight: normal; mso-bidi-font-family: Arial; mso-fareast-font-family: "Times New Roman";">www.calprotectin.co.uk</span></a><span style="color: #333333; mso-fareast-font-family: "Times New Roman";"><o:p></o:p></span></h3>
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<h3 style="background: white; margin-bottom: .0001pt; margin: 0cm;">
<a href="https://www.alphalabs.co.uk/diagnostic-products/faecal-testing/faecal-calprotectin-assay-range/calprotectin-home-testing"><span style="color: purple; font-family: Arial; font-size: 10.0pt; font-weight: normal; mso-bidi-font-family: Arial; mso-fareast-font-family: "Times New Roman";">https://www.alphalabs.co.uk/diagnostic-products/faecal-testing/faecal-calprotectin-assay-range/calprotectin-home-testing</span></a><span style="color: #333333; mso-fareast-font-family: "Times New Roman";"><o:p></o:p></span></h3>
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<!--EndFragment--><br />IBdoc and mehttp://www.blogger.com/profile/04644405174471346212noreply@blogger.com0tag:blogger.com,1999:blog-4877694666061362817.post-20188227444154703162019-03-29T08:59:00.000-07:002019-03-29T08:59:23.997-07:00A month in the life of a Crohns patient.
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<span style="background: white; color: #222222; font-family: Arial; mso-ansi-language: EN-GB; mso-fareast-font-family: "Times New Roman";">As I’ve had quite a
busy month with managing my Crohn’s disease in terms of tests and consultations
I thought this blog could focus on a month in the life of </span><span style="color: #222222; font-family: Arial; mso-ansi-language: EN-GB; mso-fareast-font-family: "Times New Roman";"><br />
<br />
<b style="mso-bidi-font-weight: normal;"><span style="background: white;">March 2<sup>nd</sup></span></b><span style="background: white;"> </span><span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
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<span style="color: #222222; font-family: Arial; mso-ansi-language: EN-GB; mso-fareast-font-family: "Times New Roman";"><br />
<span style="background: white;">MRI of the small bowel</span><br />
<br />
<span style="background: white;">This appointment had been cancelled and
rescheduled twice, I find it incredibly frustrating when you get an appointment
letter through and then the following week that appointment has been cancelled
and rescheduled, unfortunately it’s all part and parcel of dealing with this
disease and working within the system.</span><br />
<br />
<span style="background: white;">I don’t have any issues having an MRI as I’ve
had many over the years, I’m not claustrophobic or needle phobic for that
matter, which considering the amount of times I have blood drawn or had cannulas
fitted this is something I’m grateful for.</span><br />
<br />
<span style="background: white;">If you have never had an MRI there is generally
nothing to concern yourself with, you will be asked not to eat at least eight
hours before the procedure, it’s a painless procedure, apart from the cannula
that’s fitted. The most uncomfortable part of the MRI is the 2 Litres of liquid
called Mannitol which you have to consume before the procedure; it’s a
sugar-based solution that has a mild laxative effect. It’s not a particularly
bad taste; it’s just not particularly nice, as it taste like cheap squash.
After you have finished the 2 litres of liquid, you’re then asked to get
dressed into one of the medical gowns they provide - you know the gowns I’m
talking about right? They have no backs to them, which for me 27 years later
still feels very strange.</span><br />
<br />
<span style="background: white;">After you have had your Mannitol solution you
will be asked to lie on the MRI table for approximately 20 minutes. They then
take a series of pictures, with you holding your breath for each set. During
the scan you will be required to have an injection in your arm of Buscopan
(bowel relaxant) and MRI dye.</span><br />
<br />
<span style="background: white;">Once the MRI is complete you are generally free
to leave. I have an appointment at the end of the month with my GI consultant
so hopefully he will have the results of the MRI. On the day of the MRI I used
the IBDoc with a result of 38ug/g, so it will be interesting to see if the
results of the MRI correlate with the IBDoc result.</span><br />
<br />
<b style="mso-bidi-font-weight: normal;"><span style="background: white;">March 4<sup>th<o:p></o:p></sup></span></b></span></div>
<div class="MsoNormal">
<span style="color: #222222; font-family: Arial; mso-ansi-language: EN-GB; mso-fareast-font-family: "Times New Roman";"><br />
<span style="background: white;">Appointment with NHS dietician.</span><br />
<br />
<span style="background: white;">My last appointment with an NHS dietician was
over 20 years ago and frankly they were still in the dark ages when it came to
understanding the relationship between food and Crohn’s disease. So I was
pleasantly surprised when the dietician began to discuss the different diet
options; we discussed my on going challenges with introducing new foods, the
dietician explained in her experience this is quite a common theme with
patients who are on limited restricted diets. We discussed the LOFFLEX diet as
well as the low FODMAPS diet. The dietician suggested that I re-introduce food
one at a time and build this up each day in order to avoid overwhelming my
bowel and that considering I had avoided food for so many years having a
structure to reintroducing should also increase my confidence when trying new
foods. She advised each food be reintroduced over three days starting with
small portions and doubling the portion size each day; if I had an increase in
symptoms I would then stop that particular food let my bowels rest for a couple
of days and then start on a new food again. I have a follow up appointment with
the dietician in eight weeks time to discuss my progress.</span><br />
<br />
<b style="mso-bidi-font-weight: normal;"><span style="background: white;">March 6<sup>th</sup></span></b><span style="background: white;"><o:p></o:p></span></span></div>
<div class="MsoNormal">
<span style="color: #222222; font-family: Arial; mso-ansi-language: EN-GB; mso-fareast-font-family: "Times New Roman";"><br />
<span style="background: white;">Hydrogen breath test</span><br />
<br />
<span style="background: white;">Back to the hospital again, this time it was for
a hydrogen breath test. A hydrogen breath test provides information about the
digestion of certain sugars or carbohydrates and to confirm the presence of
small intestinal bacterial overgrowth (SIBO). The last time I had a hydrogen
breath test was over seven years ago and I tested positive almost instantly.</span><br />
<br />
<span style="background: white;">This time the technology has changed yet again,
I’m not hooked up to a machine, and I’m simply breathing into a small handheld
device. Basically you have to breathe into this device every 15 minute over the
course of an hour, if there is a presence of hydrogen in the small-bowel it is instantly
detected. You get the results straight away and luckily this time it appears I
don’t have SIBO.</span><br />
<br />
<span style="background: white;">If you find yourself bloated on a daily basis or
have discomfort in the stomach I’d recommend asking your GI for the hydrogen
breath test, follow the link below for full description.<o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-US"><a href="http://www.srft.nhs.uk/EasysiteWeb/getresource.axd?AssetID=83997&type=full&servicetype=Inline"><span style="font-family: Arial; mso-fareast-font-family: "Times New Roman";">http://www.srft.nhs.uk/EasysiteWeb/getresource.axd?AssetID=83997&type=full&servicetype=Inline</span></a></span><span style="color: #222222; font-family: Arial; mso-ansi-language: EN-GB; mso-fareast-font-family: "Times New Roman";"><br />
<br />
<b style="mso-bidi-font-weight: normal;"><span style="background: white;">March 8<sup>th</sup></span></b><span style="background: white;"><o:p></o:p></span></span></div>
<div class="MsoNormal">
<span style="color: #222222; font-family: Arial; mso-ansi-language: EN-GB; mso-fareast-font-family: "Times New Roman";"><br />
<span style="background: white;">Pre Vedolizumab bloods.</span><br />
<br />
<span style="background: white;">Every four weeks I have an infusion of Vedolizumab.
Before I can have the infusion I have to go to the hospital to have bloods
drawn to check that I have no infections, I also have my weight and blood
pressure checked.</span><br />
<b style="mso-bidi-font-weight: normal;"><br />
<span style="background: white;">March 11<sup>th</sup></span></b><span style="background: white;"><o:p></o:p></span></span></div>
<div class="MsoNormal">
<span style="color: #222222; font-family: Arial; mso-ansi-language: EN-GB; mso-fareast-font-family: "Times New Roman";"><br />
<span style="background: white;">Vedolizumab infusion.</span><br />
<br />
<span style="background: white;">Back to the hospital yet again, this time it’s
for my monthly Vedolizumab infusion. <span style="mso-spacerun: yes;"> </span>I
know all the nurses by name on the ward as I’ve been having these in infusions
for the last two years and it’s always a great opportunity to speak with other
patients that are having their monthly infusions. Once the nurse fits the
cannula they then attach the back to Vedolizumab via a drip. It only takes half
an hour for my infusions to be finished and I don’t generally wait around in
the ward afterward. I do feel quite fatigued after the Vedolizumab infusion,
which can carry on into the next day, so I have to factor this in when planning
work, social activities.</span><br />
<br />
<b style="mso-bidi-font-weight: normal;"><span style="background: white;">March 28<sup>th</sup></span></b><span style="background: white;"><o:p></o:p></span></span></div>
<div class="MsoNormal">
<span style="color: #222222; font-family: Arial; mso-ansi-language: EN-GB; mso-fareast-font-family: "Times New Roman";"><br />
<span style="background: white;">GI appointment.</span><br />
<br />
<span style="background: white;">I still find myself getting quite anxious when
it comes to my GI appointments I’m not quite sure why as the relationship I
have with my GI is good.</span><br />
<br />
<span style="background: white;">First up, we discussed the results of the MRI,
it appears that the 15 cm of stricturing I have had over the last ten years is
now clear and I have little to no inflammation, this correlates with the IBDoc results.
This is fantastic news, not only is my CD under control, I have no stricturing
or inflammation present which validates the data from IBDoc over the last
eighteen months.</span><br />
<br />
<span style="background: white;">Next we discussed the results of the hydrogen
breath test which came back negative, again another great result and no further
action is required.</span><br />
<br />
<span style="background: white;">Finally, we discussed the levels of Vedolizumab
in my body, apparently this test is brand-new. It’s function is to indicate
whether the levels of Vedolizumab are sufficient in the patient, it appears I
have good levels of Vedolizumab, which again ties in with the MRI and IBDoc
results.<o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="background: white; color: #222222; font-family: Arial; mso-ansi-language: EN-GB; mso-fareast-font-family: "Times New Roman";">In summary this month
has been quite busy in terms of activity, juggling work and home life can be a
challenge when faced with so many appointments. However, I am lucky that the
results of the tests are positive as I continue to battle CD.</span><span style="color: #222222; font-family: Arial; mso-ansi-language: EN-GB; mso-fareast-font-family: "Times New Roman";"><br />
<br />
<span style="background: white;">Hope you enjoyed the blog; feel free to ask any
questions or leave comments.<o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="background: white; color: #222222; font-family: Arial; mso-ansi-language: EN-GB; mso-fareast-font-family: "Times New Roman";">Follow me on Twitter </span><span style="background: white; font-family: Arial; mso-ansi-language: EN-GB; mso-fareast-font-family: "Times New Roman";"><a href="https://www.blogger.com/twitter.com/ibdocMe"><span style="color: windowtext;">@ibdocMe</span></a><o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<h3 style="background: white; margin-bottom: .0001pt; margin: 0cm;">
<a href="http://www.calprotectin.co.uk/"><span style="color: windowtext; font-family: Arial; font-size: 11.0pt; mso-fareast-font-family: "Times New Roman";">www.calprotectin.co.uk</span></a><span style="mso-fareast-font-family: "Times New Roman";"><o:p></o:p></span></h3>
<h3 style="background: white; margin-bottom: .0001pt; margin: 0cm;">
<span style="font-family: Arial; font-size: 10.0pt; font-weight: normal; mso-fareast-font-family: "Times New Roman";"> </span><span style="mso-fareast-font-family: "Times New Roman";"><o:p></o:p></span></h3>
<h3 style="background: white; margin-bottom: .0001pt; margin: 0cm;">
<a href="https://www.alphalabs.co.uk/diagnostic-products/faecal-testing/faecal-calprotectin-assay-range/calprotectin-home-testing"><span style="color: windowtext; font-family: Arial; font-size: 10.0pt; mso-fareast-font-family: "Times New Roman";">https://www.alphalabs.co.uk/diagnostic-products/faecal-testing/faecal-calprotectin-assay-range/calprotectin-home-testing</span></a><span class="MsoHyperlink"><span style="color: windowtext; font-family: Arial; font-size: 10.0pt; font-weight: normal; mso-fareast-font-family: "Times New Roman";"><o:p></o:p></span></span></h3>
<h3 style="background: white; margin-bottom: .0001pt; margin: 0cm;">
<span class="MsoHyperlink"><span style="color: purple; font-family: Arial; font-size: 10.0pt; font-weight: normal; mso-fareast-font-family: "Times New Roman";"><o:p><span style="text-decoration: none;"> </span></o:p></span></span></h3>
<h3 style="background: white; margin-bottom: .0001pt; margin: 0cm;">
<o:p> </o:p></h3>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="color: #222222; font-family: Arial; mso-ansi-language: EN-GB; mso-fareast-font-family: "Times New Roman";"><br />
<br style="mso-special-character: line-break;" />
<!--[if !supportLineBreakNewLine]--><br style="mso-special-character: line-break;" />
<!--[endif]--><span style="background: white;"><o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<br /></div>
<!--EndFragment--><br />IBdoc and mehttp://www.blogger.com/profile/04644405174471346212noreply@blogger.com0tag:blogger.com,1999:blog-4877694666061362817.post-29264481529401355962019-02-27T09:57:00.000-08:002019-02-27T09:57:23.349-08:00Eighteen Months with IBdoc<!--[if !mso]>
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<span style="font-family: "arial"; mso-ansi-language: EN-GB; mso-bidi-font-family: "Times New Roman"; mso-fareast-font-family: "Times New Roman";">In this months
blog I thought I’d share an article I wrote to evaluate my experience over the
last eighteen months using </span><span style="background: white; font-family: "arial";">IB<i>Doc. <o:p></o:p></i></span></div>
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<span lang="EN-US" style="font-family: "arial"; mso-bidi-font-family: "Times New Roman"; mso-bidi-theme-font: minor-bidi;">I’m sure you’ve heard the old
adage, “you create your own luck” well I did exactly that by writing an article
for Alpha Laboratories Perspective magazine in Autumn 2015. The article
resulted in the amazing opportunity for me to test IBdoc as a client; I have
been using Ibdoc for over a year, it’s now time to share my finding.<o:p></o:p></span></div>
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<span lang="EN-US" style="font-family: "arial"; mso-bidi-font-family: "Times New Roman"; mso-bidi-theme-font: minor-bidi;">The number one finding for
myself </span><span style="background: white; font-family: "arial";">since beginning the IB<i>Doc</i> trial.
I have found that my anxiety levels have dramatically decreased; I haven’t felt
the need to call the IBD line or prompt my GI secretary to try to move my next
appointment up. Of course the reason being is in no small part due to the IB<i>Doc</i> -
It has reduced the “waiting time” down to hours instead of days or weeks, which
means I’m not constantly second guessing or monitoring how I feel, which I find
mentally exhausting. The reassurances the results provides for me is priceless.
For the first time I can actually have a small understanding and control of
what’s going on in my bowel with out visits to the MRI scanner or the dreaded
colonoscopy. <span style="color: #333333;"> I’m also very mindful that my
fantastic GI team don’t have the recourses to be on hand 24/7 so that pain I
had felt last night or that extra trip to the loo doesn’t result in me calling
my IBD nurse for reassurances she can’t give me. On reflection I haven’t called
my IBD nurse once since I began the </span></span><span lang="EN-US" style="background: white; color: #262626; font-family: "arial";">IB<i>Doc</i><sup> </sup></span><span style="background: white; color: #333333; font-family: "arial";">trail.<o:p></o:p></span></div>
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<span style="background: white; color: black; font-family: "arial";">I believe what </span><span lang="EN-US" style="background: white; color: #262626; font-family: "arial";">IB<i>Doc</i></span><span style="background: white; color: black; font-family: "arial";"> has
allowed me to do over the course of the last year is fundamentally educate my
self in understanding my disease state. I now have just over a years worth of
hard data to discuss with my GI.</span><span style="color: #333333; mso-ansi-language: EN-GB; mso-ascii-font-family: Cambria; mso-bidi-font-family: "Times New Roman"; mso-fareast-font-family: "Times New Roman"; mso-hansi-font-family: Cambria;"><o:p></o:p></span></div>
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<span lang=EN-US
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color:#333333'>One of the cool features with </span><span lang=EN-US
style='font-family:Arial;mso-fareast-font-family:"Times New Roman";
color:#262626;background:white'>IB<i>Doc</i></span><span lang=EN-US
style='font-family:Arial;mso-fareast-font-family:"Times New Roman";
color:#333333'> is the ability to track ones Calprotectin levels over the
course of time. Within the</span><span lang=EN-US style='font-family:Arial;
mso-fareast-font-family:"Times New Roman";color:black;background:white'> </span><span
lang=EN-US style='font-family:Arial;mso-fareast-font-family:"Times New Roman";
color:#262626;background:white'>IB<i>Doc</i></span><span style='font-family:
Arial;mso-fareast-font-family:"Times New Roman";color:#333333;mso-ansi-language:
EN-GB'> </span><span lang=EN-US style='font-family:Arial;mso-fareast-font-family:
"Times New Roman";color:#333333'>app is a great feature, which shows a time
line of your Calprotectin levels.<o:p></o:p></span></p>
<p class=MsoNormal style='background:white'>
<span lang=EN-US
style='font-family:Arial;mso-fareast-font-family:"Times New Roman";
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<span style='font-family:Arial;mso-fareast-font-family:
"Times New Roman";color:#333333;background:white;mso-ansi-language:EN-GB'>Looking
at my data for the year, we can clearly see that I’ve managed, with
medication and diet to remain roughly between “ Normal” and “moderate” the
average result over the course of the year was, 138u/ug, I consider this to
be satisfactory (apart from the huge spike which was due to an Easer meal)
as my GI is comfortable with results below 200u/ug.</span><span
style='font-family:"Times New Roman";mso-fareast-font-family:"Times New Roman";
mso-ansi-language:EN-GB'><o:p></o:p></span></p>
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<span lang=EN-US
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<i style="mso-bidi-font-style: normal;"><span style="background: white; color: #333333; font-family: "arial"; font-size: 10.0pt;">Figure 1 </span></i><i style="mso-bidi-font-style: normal;"><span style="font-family: "arial"; mso-ansi-language: EN-GB; mso-fareast-font-family: "Times New Roman";"><o:p></o:p></span></i></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh24LB_VItrds047Rg1FnljR_5EfLlxEu78CzGvDi5qNDcaClVm-q4zkm5xGiRysXVtuAl9XywcZEnjM5zpWnU43F6a9_rXVVTG9PF-glmcmR2V4dijV-8jqkzEDrOsrJL9LoQ5Vgu8FdU/s1600/IMG_1967.png" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="1132" data-original-width="736" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh24LB_VItrds047Rg1FnljR_5EfLlxEu78CzGvDi5qNDcaClVm-q4zkm5xGiRysXVtuAl9XywcZEnjM5zpWnU43F6a9_rXVVTG9PF-glmcmR2V4dijV-8jqkzEDrOsrJL9LoQ5Vgu8FdU/s200/IMG_1967.png" width="130" /></a></div>
<div class="MsoNormal" style="background: white;">
<span lang="EN-US" style="color: #333333; font-family: "arial"; mso-fareast-font-family: "Times New Roman";">One of the cool
features with </span><span lang="EN-US" style="background: white; color: #262626; font-family: "arial";">IB<i>Doc</i></span><span lang="EN-US" style="color: #333333; font-family: "arial"; mso-fareast-font-family: "Times New Roman";"> is the ability to track ones Calprotectin levels over the
course of time. Within the</span><span lang="EN-US" style="background: white; color: black; font-family: "arial";"> </span><span lang="EN-US" style="background: white; color: #262626; font-family: "arial";">IB<i>Doc</i></span><span style="color: #333333; font-family: "arial"; mso-ansi-language: EN-GB; mso-fareast-font-family: "Times New Roman";"> </span><span lang="EN-US" style="color: #333333; font-family: "arial"; mso-fareast-font-family: "Times New Roman";">app is a great feature, which shows a time
line of your Calprotectin levels.<o:p></o:p></span></div>
<br />
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<span style="background: white; color: #333333; font-family: "arial";">Looking at my data for
the year, we can clearly see that I’ve managed, with medication and diet to
remain roughly between “ Normal” and “moderate” the average result over the course
of the year was, 138u/ug, I consider this to be satisfactory (apart from the
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<span style="background: white; color: #333333; font-family: "arial"; font-size: 10.0pt;"><o:p> </o:p></span><i><span style="background: white; color: #333333; font-family: "arial"; font-size: 10pt;">(Screen shot from the Ibdoc app)</span></i></div>
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<span lang="EN-US" style="background: white; color: #333333; font-family: "arial";">Crohns disease is a physical
condition, we know that of course, however one cannot underestimate the mental pressures
this disease presents. So I may have an upset stomach or my bowl movements my
have increased or I may feel nauseous but I know after a year of using </span><span lang="EN-US" style="background: white; color: #262626; font-family: "arial";">IB<i>Doc</i><sup> </sup></span><span lang="EN-US" style="background: white; color: #333333; font-family: "arial";">I’m not going to end up in A&E with a
stricture or spend weeks on a ward waiting for invasive procedures to tell me I
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<span lang="EN-US" style="background: white; color: #333333; font-family: "arial";">Having Crohns disease for twenty-seven
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and </span><span style="background: white; color: #262626; font-family: "arial";">IB<i>Doc</i><sup> </sup></span><span style="background: white; color: #333333; font-family: "arial";">is one powerful tool in my self-managing
tool kit. I wasn’t expecting </span><span style="background: white; color: #262626; font-family: "arial";">IB<i>Doc </i></span><span style="background: white; color: #333333; font-family: "arial";">to provide me with the answers to everything; using </span><span style="background: white; color: #262626; font-family: "arial";">IB<i>Doc</i></span><span style="background: white; color: #333333; font-family: "arial";"> I haven’t suddenly found a
miraculous cure, I’m still searching for the “perfect” diet and optimized plan
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<!--EndFragment-->IBdoc and mehttp://www.blogger.com/profile/04644405174471346212noreply@blogger.com0tag:blogger.com,1999:blog-4877694666061362817.post-73958974887384779482019-01-30T02:55:00.000-08:002019-01-30T02:55:13.827-08:00New Year New Attitude
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<span lang="EN-US" style="font-family: Arial; mso-bidi-font-family: "Times New Roman"; mso-bidi-theme-font: minor-bidi;">As it’s a New Year I have
been reflecting on many things and believe it or not, I find that I have to
acknowledge there are positives to having CD. “What are you talking about” I
hear you shout! <span style="mso-spacerun: yes;"> </span>Are you crazy? What
about pain, the fatigue the endless trips to hospital………….But I genuinely
believe it to be true. Maybe its because I have lived with this disease for 28
years, longer than I’ve lived without it, or maybe its the fact I’m pushing fifty
that I can reflect on some of the positives of my experience with Crohns
disease.<o:p></o:p></span></div>
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<span lang="EN-US" style="font-family: Arial; mso-bidi-font-family: "Times New Roman"; mso-bidi-theme-font: minor-bidi;">Reading back the above
paragraph, it sounds quite glib and believe me there have been many times over
the years I have felt the whole gambit of emotions, anger, hopelessness, guilt
and frustration to name a few. Anger at the fact my body has let me down.
Hopelessness of yet another treatment that has failed. Guilt and frustration
that I have yet again let my wife down or cancelled family travel plans, not to
name the countless number of my daughters school plays or my sons football
matches I have sadly missed. If I’m being completely honest I have on occasion acted
like a screaming two year old throwing my toys out of the pram and acting out
in front of friends, family, doctors nurse, you name it I’ve done it but I will
come back to that shortly.<o:p></o:p></span></div>
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<span lang="EN-US" style="font-family: Arial; mso-bidi-font-family: "Times New Roman"; mso-bidi-theme-font: minor-bidi;">So, what are the positives? Well,
firstly, perspective, I never take my health for granted. I guess you have to
be chronically ill to understand this one, but I’m truly thankful for each day
I can get out of bed and join in with life, I take great pleasure from the
simple and mundane tasks of life, like having the energy to tidy my house, make
dinner or pick the kids up from school. Secondly, I’m eternally grateful for
the free services and excellent care and compassion the NHS has provided me
over the years. I asked my wife to come to my last Vedoluzimab infusion, not
for support or pity– but because I wanted to introduce her to the nursing staff
who look after me and the fellow-suffers I see monthly, who I would now call friends.<o:p></o:p></span></div>
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<span lang="EN-US" style="font-family: Arial; mso-bidi-font-family: "Times New Roman"; mso-bidi-theme-font: minor-bidi;">As I’ve mentioned I have on occasion
acted like a small child in terms of accepting and dealing with this disease, Food
being the main focus of my child like approach. Fortunately with the help of
IBDoc I am slowly changing my attitude to food. I no longer sneak in the
kitchen for foods I cannot tolerate, dairy being a good example as it only
serves to accomplish two outcomes. 1: consuming dairy makes me feel absolutely terrible
2: if I eat dairy over the course of a couple of days my Calprotectin level rises
significantly. So I’ve decided to understand the food I eat and the impact it has
on my body. I’m still on medication (Vedoluzimab) but with no real side effects,
on this occasion, I can again find the time to be thankful.<o:p></o:p></span></div>
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<span lang="EN-US" style="font-family: Arial;">For
a long time I didn’t want to consider trying to find something to be thankful
for with my disease, and that excepting my situation felt like I was giving up.
I can’t really pin point the date I began to take the time to find gratitude
with my situation. But my new found attitude and my New Year mantra says it
all:<o:p></o:p></span></div>
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"'Enough' is a feast. <i>Buddhist proverb<o:p></o:p></i></span></div>
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<a class="DashboardProfileCard-screennameLink u-linkComplex u-linkClean js-nav" href="https://twitter.com/IbdocMe" rel="noopener" style="background-attachment: initial; background-clip: initial; background-image: initial; background-origin: initial; background-position: initial; background-repeat: initial; background-size: initial; font-family: "Helvetica Neue", Helvetica, Arial, sans-serif; font-size: 12px; outline: 0px; padding-right: 5px; text-decoration-line: none !important;"><span class="username u-dir" dir="ltr" style="direction: ltr !important; font-size: 14px; unicode-bidi: embed;"><span style="color: black;">@<span class="u-linkComplex-target" style="text-decoration-line: underline !important;">IbdocMe</span></span></span></a></div>
<h3 style="background: white; margin-bottom: .0001pt; margin: 0cm;">
<span style="font-family: Arial; font-size: 11pt; font-weight: normal;"><a href="http://www.calprotectin.co.uk/"><span style="text-decoration: none;">www.calprotectin.co.uk</span></a></span><span style="font-family: Arial; font-size: 10pt; font-weight: normal;"><o:p></o:p></span></h3>
<h3 style="background: white; margin-bottom: .0001pt; margin: 0cm;">
<span style="font-family: Arial; font-size: 10pt; font-weight: normal;"><o:p> </o:p></span></h3>
<h3 style="background: white; margin-bottom: .0001pt; margin: 0cm;">
<span style="font-family: Arial; font-size: 10pt; font-weight: normal;"><a href="https://www.alphalabs.co.uk/diagnostic-products/faecal-testing/faecal-calprotectin-assay-range/calprotectin-home-testing"><span style="text-decoration: none;">https://www.alphalabs.co.uk/diagnostic-products/faecal-testing/faecal-calprotectin-assay-range/calprotectin-home-testing</span></a><o:p></o:p></span></h3>
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<!--EndFragment--><br />IBdoc and mehttp://www.blogger.com/profile/04644405174471346212noreply@blogger.com0tag:blogger.com,1999:blog-4877694666061362817.post-39961904597392819582018-11-14T08:46:00.002-08:002018-11-19T14:22:00.578-08:00Just Stop!<!--[if gte mso 9]><xml>
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<span lang="EN-US" style="font-family: "arial"; mso-bidi-font-family: "Times New Roman"; mso-bidi-theme-font: minor-bidi;">Just stop!!… Is the line my
wife finds herself saying to me most days. I am of course referring to the
endless chatter one has with ones self when dealing with a chronic illness. You
see my brain knows there is a “system error” it knows there is something terribly
wrong and is constantly trying to find a way out, I mean constantly! It’s absolutely
exhausting! For all the useful torrents of information connectivity has gifted
us, its so very easy to find ones self falling down the rabbit hole of endless Crohn’s
disease forums, Facebook groups or “Expert” YouTube channels in search of some relief,
and lets face it, the list is endless. <o:p></o:p></span></div>
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<span lang="EN-US" style="font-family: "arial"; mso-bidi-font-family: "Times New Roman"; mso-bidi-theme-font: minor-bidi;">I often wonder if there is
some link between the classic over thinker (me) and chronic disease. Indeed, if
it was 5000BC and I was leading my tribe across a lion infested plain in
southern Africa, I would be in my element! Firing on all cylinders! Intently
observing the horizon for any potential threats, maybe a herd of marauding
wilder beasts? A pack of starving hyenas? I would be constantly monitoring for any
threats. But as it’s November 2018 and I’m sat in my living room writing this month’s
blog my classic over thinking brain is largely redundant.<o:p></o:p></span></div>
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<span lang="EN-US" style="font-family: "arial"; mso-bidi-font-family: "Times New Roman"; mso-bidi-theme-font: minor-bidi;">As you may know from previous
blogs I like to share best practice, and one of the most significant treatments
I have found for dealing with this disease is CBT (cognitive behavioral
therapy) it’s basically a talking therapy that helps manage problems by
changing the way you think. CBT is pragmatic in the sense i</span><span style="font-family: "arial"; mso-ansi-language: EN-GB; mso-fareast-font-family: "Times New Roman";">t helps identify specific problems and tries to solve them. The sessions
are also highly structured, so rather than talking freely about your life, you
generally focus on current problems rather than attempting to resolve past issues.</span><span style="font-family: "arial"; mso-bidi-font-family: "Times New Roman"; mso-bidi-theme-font: minor-bidi;"> <span lang="EN-US">CBT certainly helps reduce the “noise” from my
over thinking brain. Which gives me time to put things in perspective and focus
on anything that isn’t Crohn’s disease.<o:p></o:p></span></span></div>
<div class="MsoNormal">
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<div class="MsoNormal">
<span lang="EN-US" style="font-family: "arial"; mso-bidi-font-family: "Times New Roman"; mso-bidi-theme-font: minor-bidi;">I am incredibly fortunate to
have access to IBDoc in the context of my over thinking brain as it gets shut
down immediately when I see the results of my latest <span style="mso-spacerun: yes;"> </span>test; knowing I’m not hours away from a
massive flare up with a low u/ug reading cannot be under estimated.<o:p></o:p></span></div>
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<br /></div>
<div class="MsoNormal">
<span lang="EN-US" style="font-family: "arial"; mso-bidi-font-family: "Times New Roman"; mso-bidi-theme-font: minor-bidi;">The main focus from our GI
teams has to be based on the physical of this disease, i.e. disease maintenance,
blood works etc. but as we understand more about the gut- brain connection we
must pay attention to our wellbeing and part of that wellbeing is to accept
that maybe today there are no solutions, so put down that laptop, turn off that
phone, or as my long suffering wife says…Just Stop!<o:p></o:p></span></div>
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<span lang="EN-US" style="font-family: "arial"; mso-bidi-font-family: "Times New Roman"; mso-bidi-theme-font: minor-bidi;">Follow link for NHS CBT
services.<o:p></o:p></span></div>
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<span lang="EN-US"><a href="https://www.nhs.uk/conditions/cognitive-behavioural-therapy-cbt/how-it-works/"><span style="font-family: "arial"; mso-bidi-font-family: "Times New Roman"; mso-bidi-theme-font: minor-bidi;">https://www.nhs.uk/conditions/cognitive-behavioural-therapy-cbt/how-it-works/</span></a></span><span lang="EN-US" style="font-family: "arial"; mso-bidi-font-family: "Times New Roman"; mso-bidi-theme-font: minor-bidi;"><o:p></o:p></span></div>
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<!--EndFragment--><br />IBdoc and mehttp://www.blogger.com/profile/04644405174471346212noreply@blogger.com0