My question, followed by my history.....
Is some pouch inflammation and/or ulceration to be expected?
Today was my annual pouch endoscopy. I was told it looks the same, some inflammation and ulceration. Follow up pending biopsy results; endoscopy in one year; continue what I am doing currently.
I've been on Xifaxan 200mg/2x day as this is the dose approved by insurance; I was never on the maximum dose due to insurance restrictions. I'm also on Florastor. BM's are 3-5/day. No cramping, bleeding, no night time BM's. Frequency and bloating are well managed along with strict diet.
Right now it's being called pouchitis. As we've been monitoring this the last few years with all possible tests, the idea has been thrown around of indeterminate IBD (possible change from UC to Crohns).
Biologics were first recommended when the pouch appeared to show cobblestoning, but that resolved with much needed diet change before any meds were started. I was told cobblestoning doesn't just disappear like that it if it was indeed Crohns. No sign of inflammation further up the tract. Cipro and flagyl were then used for months with some improvement, but not as much as the GI would have liked and I struggled with Cipro side effects as a long term treatment.
I've been asking to take this one small step at a time, trying all options before biologics. The GI has been willing to work with me on it. A comment from the team before we started Xifaxan and when the GI was leaning toward biologics was, are we looking for a perfect pouch? I understand why the GI would want to treat the pouch aggressively, but I also sensed that some irregularity is to be expected. The fact is, if there are med side effects, I get them in spades and it greatly affects functioning, so it's like choosing which bullet to take. If any med changes are proposed, I definitely will want to discuss continuing to experiment with other options before biologics.
So, my question....is some pouch inflammation and/or ulceration to be expected?