This is my first blog post of 2020; I have good news and bad news.
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?
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.
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.
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!!
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.
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.
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.
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