I'm a 31 year old who has been battling Crohn's most of my life. I have been on/tried almost every medication, class of medication, and alternative treatment available with little or temporary results. In 2005 I had my colon removed since they thought at the time I had UC. Well, about 2 years ago I started having severe pain in my pouch. They thought it was pouchitis, treated with antibiotics and moved on. I started to notice some drainage from my vagina as well. So I visited my surgeon, he said he didn't see anything upon examination.
Fast forward 2 months and 2 hospital stays, I decided to visit an IBD Clinic to see a specialist there. After a HORRIBLE experience there (which I won't go into now) they discovered I have a rectovaginal (technically pouch-vaginal) fistula. They put in a seton and told me that it would help and that what I had really was Crohn's and not UC.
Started on Cimizia which initially helped with the amount of drainage, but now it's not working so well. I'm looking for anyone who has had something similar and had it repaired? One surgeon said it was so small that I should "be able to live with it" and he wouldn't do anything surgical. My GI suggested a plug?
I really would appreciate any feedback!!
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