After my redo 3 years ago I have had very minor leakage since then. What does this mean for when I am much older? Does this mean full on diaper by 65 as sphincter function gets weaker the older you are. This concerns me. Makes me think I should go to permanent ostomy before I get too old

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I am 56 y.o. and got my J Pouch when I was 29.  So over 27 years with it now.  I have very minor leakage episodes very occasionally.  For example, when I cough, and I have been doing that a lot lately because I am getting over pneumonia, the cough spasms will sometimes cause a leakage.  I sometimes (rarely) have some leakage at night, which depends a lot on how much I had to eat closer to bedtime and what I have eaten.  My general continence other than very occasional nocturnal episodes, or episodes brought on by coughing or sneezing suddenly, is very good.  My doctor recently scoped me and mentioned that he thought my anal sphincter looked very strong and that as people age, leakage become a serious issue in a lot of pouches.  The key is to keep that anal sphincter strong.

I am 68 years old and my pouch is 20 years old. I have been well till quite recently. Yesterday  though I had my first major leakage while playing golf luckily just with my husband!! The cause I believe is that I have a stricture which need to be seen by my surgeon soon, which cause me not to be able to empty my pouch properly these days!!! I was quite upset yesterday as it is difficult enough to control all and cope with the jpouch as we all know but to have a sudden big leak as yesterday was awful! I am looking forward to do this balloon operation and if anyone has done it please let me know something.

Thank you.

Patrizia-

You are referring to a balloon dilation. It’s a very common procedure and if the stricture is in the area of the J Pouch inlet (which is also common), it’s something a gastroenterologist can do during a routine scope. I am narrowed at the J Pouch inlet but my GI said as long as he can get a scope through it doesn’t need to be dilated. The balloon dilation can cause stretching and tearing and should be done by someone experienced with the procedure.

If your stricture is causing incomplete evacuation or leakages, then it’s probably lower in the pipeline, and if it’s in the area of the anal sphincter it is in fact a procedure that should only be done by a colorectal surgeon. There are risks with that procedure which include a severe weakening of the anal sphincter and long term reduced continence. Any surgery that touches the anal sphincter is going to weaken it and, as a result, weaken your continence.

Thank you CTBarrister for your clear reply.

Yes it will be a colorectal surgeon in St Mark sometime in September. I do hope that I will not have any weakening of the anal sphincter though! He told me I might have to use once back home a metal piece which will help to keep the dilatation open, few minutes every day. I am not sure where the need of dilatation is exactly but I feel it is pretty close to the cuff.

 

I would ask him if any surgery will touch the anal sphincter or not. That particular area is a tough one to surgery. I had a skin tag on my anus and was referred to a colorectal surgeon at Yale and he explained to me surgery wasn’t necessary and was very risky for something that’s really more a cosmetic type of issue than a functional issue. I didn’t know what the skin tag was, but it’s just a benign growth that does not interfere with defecation or cause leakage.

I wish you good luck! Let us know what happens and post back after your surgery.

Hi Patricia, I too have a stricture that was causing incomplete emptying and leakage. I had two balloon dilations under sedation done by my GI doctor. They couldn't get beyond 10 mm with that procedure. I've most recently had a dilation with a Hegar dilators, done by my surgeon. He got to 16 mm, which is a normal range. I also use these dilators at home. This procedure has helped me greatly to get much better function of my pouch. CT is right about the things that could go wrong. Talk with your surgeon about all that and get the answer to the questions that you need. One thing is certain, you can't go on as you are. Mine certainly turned out well. Good luck to you. Let us know how it goes.

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