Hi All,
I’m going on year 29 of a hand sewn j-pouch and have slowly over time slipped into the endstages of the guidelines for treatment of pouchitis. Right now I take Augmentin, Budesonide, and oral mesalamine daily to stay at about an 75-85% level of function and comfort. I’ve been on daily antibiotic therapy for around 10 years first with flagyl, then cipro and finally the augmentin. As always happens, they eventually lose effectiveness, which is where I find myself over the last 6 months. The daily Budesonide is new. I have tried cycling back to cipro and flagyl to no effect. We have started talking Entyvio.
I see a top specialist in Chicago, but at this point I’m looking at going someplace where they are leaders in that actual pouch itself and complications. I know Cleveland Clinic used to be the leader in all things pouch, but my research shows they’ve had quite a few retirements and leaves including their top guys Shen and Remzi over the last few years.
Does anyone have recent experience treating complex pouch issues? If so, would you recommend any provider? Bonus points if someone can speak to how it works for someone from out of town. My hope would be I could do some virtual stuff to cover history and initial stuff, then come in a week for testing, and have most follow-ups be done virtually.
