Back to life, back to reality

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.

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.

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.

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.

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. 

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.

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.

I will keep you up to date in my next post.

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https://www.calprotectin.co.uk/

https://www.ibdoc.net/ 

 

 

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.

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:

Probiotics

These are fermented foods that have live bacteria within them, such as plain yogurt, kefir, kimchi, miso, tempeh, and fermented veggies like sauerkraut.

Prebiotics

Foods that feed and maintain the good intestinal bacteria.

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.

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.

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,

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.

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.

I’ll let you know how I go on in next month’s blog

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

I love connecting with people online that take the disease seriously and lead from the front regarding appointments treatments and research. 

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.

If you have any questions about this blog please DM me.

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https://www.calprotectin.co.uk/

https://www.ibdoc.net/ 

Lets talk about strictures

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.

 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.

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.

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.

 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.

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.

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.

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.

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.

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.

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.

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!

If you have any questions about this blog please DM me.

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https://www.calprotectin.co.uk/

https://www.ibdoc.net/ 

Crohns disaster part 3, the plan that isn't a plan

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!

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. 

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. 

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!

The challenge comes when faced with the decisions we are forced to make, for me this comes with the plan from my consultant.

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.

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”

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.

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. 

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.

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.

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.

Please get in touch if you’re like me and are in between medications, I’d love to hear your stories.

https://twitter.com/IbdocMe

https://ibdocandme1.blogspot.com/

https://www.calprotectin.co.uk/

https://www.ibdoc.net/ 

 

Crohns disaster part 2, “Russian roulette anyone?

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!!

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.

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.

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.

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. 

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. 

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…. 

So, once again, I find myself on the Crohns carrousel of steroids, loading doses, blood tests, and landline conversations!!

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Crohns disaster!

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.

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.

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

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. 

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.

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.

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

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 

Calprotectin levels are again.

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. I need now to pay it some respect and attention, I have to whether this flare up and get my inflammation under control with new medication, and little patients. 

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