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I was diagnosed with UC when I was 11 in 1989. By the time they knew what it was I has a total colectomy and reversal. When I was 24 I started having problems related to Crohns. Ended up having major surgeries and was left with the ultimate decision to have an ileostomy. Once again I had to adapt to a new normal. It was a lot of trial and error with the ostomy but I did it. Went back to nursing school and graduated. Which brings me to now. Last year in had a horrible bout with pouchitis.I had no idea what was going on except  i was habing the urge to have a bowel movement and that hasnt happened since 2007. I took flagyl/cipro and it cleared up. I was sent to a surgeon and she told me the worst and all the complications instead of anything good. I said forget that. Well now I'm having problems with pouchitis again. I have an ileostomy and a J-pouch that hasn't been functioning since 2007(except for the oÇcasional bouts of pouchitis and then things happen in that area that shouldn't).  I'm having the urge to have a bowel movement and massive amounts of clearish draining come rushing out of my rectum. This is not normal.  Unfortunately this pressure and drainage has caused me to miss work and people get irritated due to not understanding what is going on. So my question is this, has anyone had the J-pouch removed?  I need to know what I am up against because this is not quality of life. What was the recovery time and have there been any new complications due to the surgery? Any information would. Be great.

Thanks.
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Sorry to hear about the trouble you're having, but you've come to the right place for some help & answers.

 

Short answer is yes, several people have had the pouch removed for a variety of reasons. I'll be having it done myself in the near future. If you go up to the blue menu bar and use the search function, you'll be directed to posts about the issue.

 

Best,

Gin

Pouch removal is a complex surgery, though it would likely solve your problem. I'd suggest that you make sure you've made every effort to clear up the (presumed) pouchitis first. If you can get rid of that and be fine for an extended period, that might be preferable to surgery. Furthermore, even if you go ahead with the surgery, the procedure might go better with a less inflamed pouch. Have you tried (for example) combination antibiotics (e.g. Cipro + Flagyl)? That's what my pouchitis now requires (though I don't have an external ileostomy). Have you tried any rectal medications (e.g. cortifoam or Canasa)?

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