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7 replies

Pouch advancement/revision stories

M MommaMember

My 18 yr old son, is diverted back to an ileostomy due partially to antibiotic resistant pouchitis and they also saw some separation at his anastamosis.  He already had a mucosectomy and has no cuff, so I'm not sure what the advancement/revision entails.  They will have to do more tests MRI, pouchogram and perhaps defecography.  He is on Entyvio to hopefully put the pouchitis in check but he will also need some surgical intervention to fix the anastamosis if the surgeons think it is salvageable.  The upper part of the pouch looks good so I don't think he needs a complete redo.  Since he is so young I know he is hoping to fix the issues and reconnect.  For those of you who have had pouch advancements/revisions, how did it go?  Was it successful? Any complications, regrets, or things to consider? How long was the recovery and did you stay diverted until things healed?

Last edited by Momma
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J jeaneMember

Do you mind if I ask how they determined his anastomoses has separated?  I thought w no cuff he already has his pouch advanced?  Possibly if they can get the pouchitis under control they can keep the pouch then salvage the anastomoses w redo surgery and no further pouch advancement would be needed.

I have had ulcers from pouchitis, and  issues at my anastomoses ( stricture) as well as fissures.  I’ve been recommended for temp ostomy for three months and cuff removal and pouch advancement. I have been fighting more surgery. 

Wishing your son good luck and improved health. Let us know his treatment plan. 

Last edited by jeane
M MommaMember

They saw the separation with a pouchoscope. I’m using the term advancement but probably revision is more accurate as it seems like advancement is strictly for removing cuff and doing a mucosectomy which he already has. We were told he does need some surgical intervention to fix the anastomosis. I don’t think he needs a complete redo as most of the pouch looks good, just some inflammation at the bottom and a separating anastomosis,  but this was causing him enough pain and misery to get diverted. 

Last edited by Momma
J jeaneMember

I understand. I deal with the same pain and issues.  So far no separation but I’ve been recommended for diversion and advancement.  Just frightened about it but at times the pain can be unbearable 

Best of luck to him.  Where are you located? Dr remzi in NY is the absolute best for revisions if anywhere near there. 

aka KNKLHEADaka KNKLHEADMember

I had a pouch revision surgery with Dr. Remzi.  I almost forget all I went through, including three different ileostomies. (!)  Two years out from my revision and I consider myself 100% normal.  I am a very lucky guy and can't say enough about Dr. Remzi who said, simply, "you have a mechanical issue.  I will fix you."  Best wishes.

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