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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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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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.ibdoc.net/