Calmo
Visbiome

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FM
Former Member
Hi all,

I am currently on my third illeostomy and for all intents and purposes it will be a permanent ostomy. I had a jpouch built ten years ago and tried the reversal twice with both attempts failing. I am currently happy and healthy with no ostomy issues other than skin difficulties. While visiting my ostomy nurse yesterday she suggested that I should be checked out by my doctor as cancer can develop in unused pouches/the rectum. I had not considered having my disconnected jpouch removed until now. I had my colon removed orginially because of long term UC and cancer risk. Because my last surgery was a rushed decision due to a fistula that developed there was no time to consult re: an end illeostomy. Can anyone speak to the benefits of pouch removal and permanent end illeostomy vs. keeping a temporary illeo permanently? If it is good pratice to have the unused pouch removed i would like to do it sooner rather than later as I am in my early thirties and want to recover and begin trying to start a family.

Thanks in advance to anyone who has any insight.

Carla

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C chiromancerMember
My situation was a bit different I had my J pouch disconnected and left in place and an end ileo performed. It was assumed I would have the disconnected J removed at some pt. The disconnected J never behaved and had, after the first month lots of secretions. I just had it removed though my butt is normal looking, not sewn up aka Barbie or Ken butt. There is an anal closure on the backside of the anus.

I think the cancer risk in the unused J is real but pretty small.
There are some real potential problems with pouch removal due to possible nerve damage and wound healing and it is a big surgery needs to be done by experienced surgeon. It sounds like your loop behaves pretty well, mine did also. My ileo end is somewhat better then my loop but not dramatically so. The one thing I would not recommend is going to an end ileo and leaving the pouch in place. While I had some mucus and other secretions with the loop ileo, they were far far worse with the disconnected pouch and the end ileo.
C
J JillMMember
If you have no signs of cancer now, and if you are able to function and be healthy with the disconnected pouch, you should pursue your family before considering removing the pouch. It is a big surgery and one that will bring on a risk of adhesions, and therefore a risk of fertility problems. Have your family, then determine if the pouch needs to come out for long term health issues.

I had a disconnected pouch and didn't do well so had the pouch out before having my family. But if I could have managed to have the kids with the pouch in I would have. I did end up with IVF, but luckily it worked first try, three times (I miscarried my 2nd pregnancy but have an almost 7 and almost 4 1/2 year old). Both my kids were conceived and delivered with my perm ileo.
J

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