I try to avoid them if possible, but I still use them occasionally for muscle pain or headaches. I definitely took to many before being diagnose with UC in 2006.

Yes that is true they are a cause of pouchitis and we shouldn’t touch them! My doctor says not even one pill ever

Shen B. Pouchitis: what every gastroenterologist needs to know(https://www.cghjournal.org/article/S1542-3565(13)00483-7/fulltext). Clin Gastroenterol Hepatol. 2013 Dec;11(12):1538-49

“In addition to gut microbiota and mucosal immunity, genetic, vascular, and luminal factors (such as nonsteroidal anti-inflammatory drugs [NSAIDs]) are likely to contribute to the initiation, exacerbation, and progression of pouchitis. Pouchitis almost exclusively occurs in patients with restorative proctocolectomy with underlying IBD and rarely in those with FAP, suggesting the contribution of genetic and/systemic factors to its pathogenesis. Immunogenetic studies showed that genetic polymorphisms such as those of IL-1–receptor antagonist, 56 nucleotide-binding oligomerization domain containing 2/caspase recruitment domain family, member 15 (NOD2/CARD15), 5758 or a combined carriership of Toll-like receptor 9-1237C and CD14-260T alleles, 59 were associated with the risk for chronic pouchitis. Mutations of NOD2/CARD15 and TNFSF15 also were shown to be related to severe pouchitis.”

I use NSAIDs sparingly, but I do use them.

I think that’s the answer - just once in a while

If there is pain I take acetaminophen.  I try not to take much of that either. 

Yes tylenol only for me if there is a chance of exacerbating pouchitis why risk it? I hope my snip of Shen’s  article helped

I always start with Tylenol, and reserve NSAIDs for the occasions when that’s not sufficient. I take Celebrex, which *might* be easier on the gut than ibuprofen. I also know I’m taking a risk.

Thanks

@Still Standing posted:

I try to avoid them if possible, but I still use them occasionally for muscle pain or headaches. I definitely took to many before being diagnose with UC in 2006.

Thank you

@katenet posted:

Yes tylenol only for me if there is a chance of exacerbating pouchitis why risk it? I hope my snip of Shen’s  article helped

Thanks, the problem is, I'm having my knee replaced soon, and the surgeon says I must take NSAIDs. My GI doctor says the opposite. 

Have the two of them chat them and let them come up with a treatment plan

That’s a good idea

I recently had a large kidney stone removed and was prescribed 800mg ibuprofen… I used them for a week and had no pouch issues out of my normal insane life.  Maybe I just got lucky.

That’s great.  I think it may be safe for a short period.