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My pouch is great it's my cuffitis that isn't. Be cause the used tissue from the rectum that had UC in it. So I've had cuffitis the intire two years. I'm seeing a surgeon Tuesday to make an appt. to have it all removed. 

Why can't they use tissue that is healthy com the small intestines? I guess I have bad luck. It sucks because ive wasted time, money and pain for this pouch. What a waste. I won't let them rodo it because I will be back in this position again someday and I can't go through this hell again.

any advice welcome.

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They can remove essentially the whole rectal cuff, as well as the mucosa that can develop cuffitis. There are two reasons this isn't usually done automatically:

1) Without a rectal cuff the anastamosis must be hand-sewn instead of stapled. The hand-sewn procedure is much more technically difficult. It's quite possible that most J-pouch surgeons have never performed one, and it's certain that most of them aren't very experienced at it. It's easy to screw up.

2) The outcomes are worse, on average. The risk of incontinence is greater with a hand-sewn procedure, and most folks with UC don't develop cuffitis. That's not very comforting when cuffitis is ruining your life, but every roll of the dice includes some possible stinkers. Even when rolling the dice was a good bet, it's not always a winning bet.

Pouch advancement surgery with mucosectomy generally solves the problem when the surgeon is carefully selected. That usually means traveling to a different city. It's another roll of the dice, of course, but it's usually a good bet. And for some folks the idea of any more gambling than absolutely necessary has become intolerable at that point. Whatever you choose, I hope it works well for you and you feel better!

Have you tried any injectibles  like simpomi before ditching the pouch?  I have struggled since day one as I should have had a three step procedure.  My cuff is always a mess also w scar tissue.  I think the percentage of those of us  w chronic  cuffitis   is higher than most surgeons would like to admit.   Also, raw, diseased tissue and high doses of steroids don't make a good healing combination which can result in chronic strictures  which I also have at my outlet connection. 

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