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Hi all, 

I am struggling with conflicting medical advice and really need your wisdom. I have a 7yr diverted pouch, with ongoing pelvic pain, and inflammatory arthritis that appears to flare when my pouch is irritated. 

 My bowel surgeon surprised me yesterday with a novel idea to try removing the last section of rectal cuff  and re-anasomise the pouch to the bottom - ie just try pulling the pouch down, and removing the inflammatory tissue still affected by UC and cuffitis.  This would be a much smaller surgery than total pouch removal (abdominal incision)., and may remove the trigger for arthritis (no guarantees of course).  

Alternately my rheumatologist suggest I try combination ant TNF (Humira) and methotrexate. I am really not well across the risks with these drugs yet. What are your thoughts...?? 

I made a hasty decision when I was with surgeon to book in for this in 4 weeks, he thinks will be a simple procedure maybe 3 days max in hospital. But I can still cancel if I am not comfortable with the idea. 

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Pouch advancement surgery with mucosectomy and a hand-sewn anastomosis can be very helpful when cuffitis can't be controlled adequately with medication. I'd offer two basic suggestions: 1) try the medication first. You can always stop it if it's unhelpful or has unacceptable side effects. 2) A hand-sewn anastomosis requires a very skilled hand for good results. It's easy to screw up, and then you're done. How many hand-sewn procedures has your surgeon done? Given what I've read here, I'd travel to New York and have Dr. Remzi perform this procedure if I needed it.

Good luck!

I am with Scott on this, unless your surgeon is quite certain that pouch advancement is in your best interests. From what you wrote, it seems more like a "Hail Mary" than an established next best option. The main reason I think you may be better off going with a biologic first is because you may still need it even with the surgery. 

One thing to keep in mind is that you'll need to give Humira and MTX three months before deciding to give up on it. I had good luck with Remicade and Imuran in controlling my chronic pouchitis. I must tell you that I went through Humira, Simponi, and Cimzia before Remicade, but that was just for my arthritis. The chronic pouchitis came later.

Jan

Last edited by Jan Dollar

I believe that Jan and Scott are two of the more knowledgeable people on this forum and have found their advice to be very helpful so I would defer to them in their knowledge; however having said that I feel it necessary to chime in and say that I hope I never have to see Humira or Remicade again as I was on both of them (prior to Jpouch) and the side effects were absolutely intolerable  (at least for me). Nor did they help. Not a fan.......

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