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

 

Original Post

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

Okay. Thanks so much. If it's not too personal to ask, did you only have the pouch removed or did you also have the remainder of rectal cuff etc removed and get sewn up down below? I'm wondering, maybe my cuffitis will subside once pouch is removed and I can avoid having the whole thing taken out?

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.

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