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lholdem

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 ❤️‍🩹

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Scott FScott FMember

If the single round of antibiotics (2 weeks?) doesn't do a lasting job, the options for long-term continuous treatment seem like antibiotics or biologics. Both have pros and cons. If it's truly Crohn's then the biologics are more likely to work well, but if you feel strongly about avoiding biologics then you might ask about trying an extended course of some months of Cipro to see if that clears up the ulcers and inflammation (at least while you're taking it).

Scott F
lholdemlholdemMember

Hi Scott, thanks for the reply. I see your diagnosis is Chron’s. Have you had to treat that separately from the pouchitis or just been able to manage with antibiotics alone?

I will do biologics if I really have to. I think I’m grappling with the reality of long-term ramifications of that. I did a short stint with them prior to surgery, and while it helped the inflammation I had a lot of side effects.

I will ask about doing a longer regiment of antibiotics, maybe at least until we do the next scope. In my experience when I did a round of antibiotics my symptoms seem to clear quickly and then return just as quickly after finishing the meds.

It might worth noting that I am breastfeeding so I will be doing Augmentin rather than Cipro. I’m not sure if there’s a big difference in efficacy but it seems Cipro is the usual choice for pouchitis.

lholdem
Scott FScott FMember

I’ve been successful with just antibiotics for about 14 years. OTOH they never did manage to pin down a clear Crohn’s diagnosis for me and just left it “indeterminate.” Antibiotic efficacy seems to be quite variable, perhaps reflecting vastly different microbiomes between people. Augmentin never did the trick for me, but YMMV.

Scott F

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