I’ve posted updates here on my Crohn’s Disease (diagnosed in 2007) from time to time.
This has been a very good year: in late January I noticed that my Crohn’s symptoms had improved somewhat and were better than they’d been for over ten years!
The improvement in symptoms means I can do more with less worrying about how close I am at all times to the nearest toilet. For several years now that had been a real concern and limited what I could do, especially in the mornings. Which has been very frustrating. This year I’ve gone on some long morning walks in rural areas and been ok, which has been amazing!
Also I can now eat high-fibre foods again that I’ve avoided eating for over ten years, like lentils and green salads. Until this year they were too hard on my system.
It’s possible my Crohn’s Diease is somewhat better because of the current medicine I’m on (rizankizumab/skyrizi). However I’d been on it a whole year already when my symptoms improved, so I think it’s more likely that my healthier eating which started three months earlier has caused the improvement. In particular the choice to stop eating almost all added sugar. I’ve tried various diet adjustments before and not noticed any significant improvements in my symptoms; but perhaps I’ve never focused on cutting out almost all added sugar before.
The improvement in symptoms has led to something else amazing: last month, I saw my doctor, expecting him to say it was time to refer me for my annual endoscopy procedure (almost always a colonoscopy). To my surprise he simply said “You’re doing well – I’m pleased! I’ll see you again in six months.” So, no endoscopy this winter!
I dread colonoscopies. Ever since my diagnosis I’ve been having them every 1-2 years since it’s the best way to see the state of my colon. When I moved to the UK in 2022 I started having them annually (except for last year when I had a sigmoidoscopy – see below). So not having a procedure this winter is very significant and wonderful news!
The prep isn’t why I dread them, although anyone who’s had a colonoscopy knows the prep is not fun. It’s that I have increased pain and symptoms for weeks afterwards. Given the reaction I get from medical professionals this seems to be unusual. They general express surprise and are rather dismissive, which, to be honest, is frustrating and rather invalidating.
It took me a long time to realise the after-effects were happening after every colonoscopy. Evidently I hadn’t yet realised four years ago when I wrote about doing the prep the day before my colonoscopy, since I said “it will all be over for another year” as soon as the procedure is finished. I now know that unfortunately, the worst part for me comes afterwards.
In early 2024 I noticed my after-effects showed up as a big spike in one of my regular tests (faecal calprotectin). Later in the year I showed the spike to my gastroenterologist at the appointment when he was going to refer me for a colonoscopy and asked “Do I really have to have one this year? I think it really sets me back.”
He ran through a list of reasons why he’s not comfortable waiting longer than a year. The main one was, I still had ongoing inflammation since my medication (and by this point I had tried all but one of the available ones) had not yet managed to get my Crohn’s Disease into full remission.
I was despairing somewhat after hearing that, but then he paused and added “Actually, we could try a sigmoidoscopy instead, since all your inflammation is in your sigmoid colon”.
It’s a similar procedure but the prep is different, which is significant since I suspect it’s the colonoscopy prep more than the procedure which causes my after-effects. Colonoscopy prep surely is very harsh on an inflamed system. I readily agreed to the sigmoidoscopy and left with no certainty but at least the hope that this time I wouldn’t feel so bad after the procedure.
I had the sigmoidoscopy and I did feel much better than after my colonoscopies: I didn’t have any increased symptoms! In fact, because I was paying close attention to how I was feeling afterwards, I noticed that my Crohn’s symptoms had lessened and were actually better than they had been for over a decade, as mentioned above.
And so a month ago, since the sigmoidoscopy was a much better experience, I was planning to ask for one again this winter at my gastroenterologist appointment. But I was afraid he’d respond that I needed a colonoscopy since it had been two years without a full check of my colon. I absolutely did not expect him to be ok without ordering any procedure at all at the appointment. This will make my winter so much better!