Hey all, been a while since I posted. I finally got set up with a new specialist here and a got my first scope since 2019. My pouch has always had some level of inflammation. (As an aside, this has always been the case although I’ve been treated occasionally for pouchitis. It always seems to come back to the same “simmer” level of inflammation for me. My previous specialist would give me the option of just leaving it alone if I felt fine which I usually did.)
I expected largely the same result since I’ve been feeling well without any major issues, but this time he found “deep ulcerations” 20cm above the pouch in the small bowel. In his words, anything up to 10cm above the pouch might be considered inflammation from “backwash”; above that is considered a flag for Chron’s. I’ve had a UC diagnosis for at least 20 years and been checked multiple times for Chron’s and this is the first time there’s been something this definitive.
The bizarre thing to me is that I would think with significant ulceration I would have had more symptoms? I really feel like everything is under control, I have basically no pain, rarely urgency, and most discomfort I can control with my diet. My CRP levels came back as normal. My fecal calprotectin did come back slightly elevated (129 with 0-120 being normal range) but still not crazy. I remember when I got those inflammation markers tested before surgery and they were crazy high.
Anyway, part of this is just me processing because it’s really upsetting to get back on the immunosuppressant/biological drug train again. I know Chron’s isn’t something to leave unchecked but I also wonder how dire this situation is? I feel like there’s a disconnect between my symptoms and the scope results.
The plan now is to do a round of antibiotics to treat for pouchitis, do a MRI of the small bowel and then repeat the scope in 6 months to see how things are looking. If the inflammation persists in the small bowel then we’ll likely start Stelara (curious if anyone has had experience with that?).
Anyway, sorry for the long post. If you stuck with me to the end I appreciate any input you have ❤️🩹