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Hi guys. I am so tired of struggling with chronic pouchitis and cuffitis. No matter what I do I can't seem to get it under control. I am considering getting my pouch removed along with my recall cuff but my surgeon said it's a very difficult and risky surgery which could result in complications. Please if any of you have had this surgery and can tell me in detail what your experience was like I would deeply appreciate it. XO

 

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I did not have the complications you have been experiencing, but did have to have my j pouch removed due to recurrent high grade dysplasia in the anal cuff plus very weak sphincter muscles.  Before opting for more surgery, I suggest that you get a second opinion from a doctor well experienced in dealing with j pouch problems.  There may still be a chance that yours can be saved.

While an end ileostomy was an option for me, I strongly did not want the bag with its associated issues.  I opted to get a BCIR (similar to a k pouch) that does not require having an external bag.  The surgery went very well and I have a very good quality of life.  In my case, removal of the j pouch went well, although my surgery took about an hour longer due to the presence of adhesions.  Removal of a j pouch is a difficult surgery and you should chose a surgeon who has removed many of them, no matter what surgical option you choose.  Best of luck for whatever you decide to do.

Bill

I first was diverted to an end ileo but my pouch still problematic. I had similar j-pouch problems as you are experiencing. I wish I had listened to my surgeon and had it all done in one surgery as I went back 6 months later and had my pouch and anal stump removed.

I am glad I did it as the quality of my life is much better now. In had the removal surgery 15 months ago.

If you have not I suggest you get a second opinion. I highly recomment the Mayo Clinic. Let me know if you want any information about them. My surgeon there said the surgery is more complicated than the original j-pouch surgeries. That is why you need a surgeon that has a lot of experience removing them. I recovered faster than from the j-pouch creation/colon removal surgeries. I think the recovery was better as I knew what to expect and didn't have butt burn to contend with. Getting use to an ileostomy takes time too. I had to use cushions for a months until my barbie butt was healed but that wasn't a big deal.

Last edited by TE Marie

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