Hi all,

Hoping someone has experience with this. I had my surgery about 16 years ago and have been living with my j-pouch since then. I've never had the success that some have had with it, and my issues have become progressively worse. My doctor told me that my issues have stemmed from the fact the surgeon left my rectal cuff which apparently they don't do anymore. My rectal cuff is chronically inflamed and is now scarred and growing polyps. My doctor told me my choice is to basically live with it or get an ileostomy. Has anyone ever gone back and had the j-pouch surgery redone by removing the rectal cuff (and had it be successful in reducing symptoms/bms?)

Original Post

One concern that I have about removing the rectal cuff at this point is the chance that it would compromise the anal sphincter, thus increasing leakage.  Hopefully others who had that surgery could relate their experience with it.  In my case, I had a malignant polyp in the anal cuff, recurrent high grade dysplasia and significantly weakened sphincter muscles, so the J pouch had to go.  An ileostomy was recommended in a second opinion, but that was an option I very strongly did not want.  I already knew about the K pouch and learned about the BCIR, two procedures that do not require having an external bag.  For various reasons, many doctors do not recommend these procedures or are unaware that they exist.  There is a lot of information about them in the internet.  I opted for the BCIR 6 years ago and have had very good results with it.  My thoughts are to try to save your J pouch, but be aware that you have options if that does not work out.

Alaskanwombat, you need to talk to a different surgeon. It is still common to leave in the rectal cuff during surgery, because it’s easier to perform and has a lower risk of incontinence. If the cuff becomes problematic, though, as yours has, the cuff can be removed in what is called “pouch advancement surgery.” This is usually done with a mucosectomy. There is some risk of incontinence, and the hand-sewn procedure is technically difficult, so I would choose a very experienced surgeon if at all possible. And as Bill V says, even if you choose a through-the-belly exit for your ileum there are alternatives to an external bag.

My wife had her 1st J-pouch for ~2.5 years and basically her rectal cuff still had UC and was a chronic problem, things never seemed to function correctly for her and nothing would seem to calm it down.   She was diverted 1.5 years ago and eventually had a “pouch advancement surgery” with a mucosectomy last July.  There were major complications when creating her new jpouch as her SM artery wasn’t long enough to connect her pouch (a separate topic) but with another surgery in between she recently had her ileostomy reversal.  Yes as stated above everything was hand sewn and they did perform tests to make sure her muscle strength was adequate for control before continuing.  This whole process has been a lot  harder on her and recoveries took longer with these surgeries compared to the surgeries for her 1st jpouch but she was adamant about giving a jpouch one more try.  It’s still too early to tell if things are functioning better for her this time around but we are hopeful.  

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