I just went for my annual pouch endoscopy and was told I have a lot of inflammation. I was surprised as I have been feeling well, except for when I eat things that I know do not agree with me. Has anyone had this?
I am to return for an office visit to discuss treatment after biopsy lab results come in.
My history was pouchitis diagnosis in 2013. It was excruciatingly painful and undiagnosed for over a decade, but responded very well to antibiotics. I've only had a few minor recurrences. Last year inflammation above the pouch was noted during the endoscopy so a small bowel series was done to eliminate Crohns (which I never had; I had UC). Biopsies were also done. I had time to get back on the wagon with my diet so there was no inflammation by the time the small bowel series was done and biopsies showed no issues.
All I can say currently is that I've not been treated for pouchitis in a few years, I do not take VSL #3 (cost and experienced bloating) or any other probiotic (not convinced if they'll help since VSL seems to be what the doctor says to take for maintenance). I feel best on a low/no carb/no sugar diet, like many people; that's largely what I changed before going in for the small bowel series last year. I have not been following my diet once again, except to avoid pasta and rice which make me miserable. I take BosMed 500 which is an anti-inflammatory that some people have found very valuable; I also started this before last year's small bowel series and felt better very quickly.
Sorry this is a bit long. I'm just stumped that the doctor says I have a lot of inflammation (more than last year), when I feel fairly well this year while last year I felt awful. Oh, and last year the doctor said it was NOT pouchitis. Since the inflammation and symptoms resolved last year, she did not give me any treatment. She did give me VSL samples and said I should be on it for maintenance.....but like I said, between the cost and bloat feeling, I dropped it.
The doctor said the other day that it's important I come in for treatment after the biopsy results due to risks of Crohns, perforation or losing the pouch. I will go in even though I feel "OK," but she used this same scary convo last year when I was feeling symptoms that were uncomfortable.
