First, I am glad I found this forum.  I thought I was the only person out there that felt like broken glass has been going through my (insert explicit word here).  I jokingly say that, but it is the worst pain I have ever felt.  Nonetheless, a little background: UC, total colectomy J-Pouch December 1988, take down March 1989.  Pouchitis off and on over the last 29 years.  But over the past 3 years has become more severe and more frequent.  Most flare-ups I take off of work, and the last one lasted 3 weeks.  I am currently on Cipro and Flagyl.  Because of the severity and frequency, the GI doctor is now suggesting vedolizumab (taken IV).  I have done my research and for starting something like this makes me a little nervous.  Is anyone possibly taking this and can give some feedback?

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Jan Dollar posted:

I’m not on that one yet, but I’ve been on one biologic or another since 2005 without issue. Now I’m on Remicade and Imuran. No problem.

I worry about the negative effects of NOT being on a biologic.

Jan

I concur. I was apprehensive about starting a biologic but the suffering had gone on long enough. My pouch is old but I'm young, and I was seriously concerned about the havoc long-term unchecked inflammation was wreaking on my health.

My doctor suggested vedolizumab (Entyvio) first, but later settled on Humira because it also treats psoriasis and spondylitis. I've only been on it for a month and am starting to notice a reduction in pouchitis symptoms. Who knows whether that will continue, but if it doesn't, Entyvio or Remicade is next. Long-term pouchitis is hell and I don't want to dwell there anymore if I don't have to.

 

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