Ileal Conduit to Indiana Pouch - Worth Changing?

In this discussion
Replies
4
Views
6260
vpl
Five years ago, I had an ileal conduit cystectomy. I have been having annual hospital check-ups, and on this visit, I saw a different surgeon. During our conversation, I told him about some of the problems I have been experiencing following this operation, and he asked me if I had considered having an Indiana Pouch.

Has anyone here had this done? - changing from an ileal conduit to an Indiana pouch, and if so, were they feeling better for having it done?

I'm in a bit of turmoil as to whether to leave well enough alone and put up with my bag and its problems or to go through more surgery and experience different kinds of problems.

Was it worth changing and having another operation?
Your experiences would be very much appreciated before I make my final decision.
Gray Logo for MeetAnOstoMate

Why Join MeetAnOstoMate?

First off, this is a pretty cool site with 33,095 members. Get inside and you will see.

We're not all about ostomy. Everything is being discussed in the forums.

It's a very special community, embracing all ages and backgrounds. People are honest and truly care.

Privacy is very important - the website has many features that are only visible to members.

Create an account and you will be amazed.

Mrs.A

Wow, I see now why there are 100 views and no replies, this is something only someone with more understanding of the situation can answer. I hope you find some helpful replies soon. I don't know enough about the two to say anything. I will say a prayer that you make the right choice.

Gray Logo for MeetAnOstoMate
vpl
Latest update:

I went back to see my original surgeon, and we had a long talk about the pros and cons of me having an internal pouch made. He said that if I was really adamant that I wanted to go ahead and have it done, he would refer me to a colleague of his that specializes in this operation. But, having thought about what the recovery time would be and the other pitfalls and risks, I have decided to leave well enough alone.

I'm pleased that I asked him, and he went into the details; otherwise, I would be forever wondering.
Past Member

Personally, I wouldn't recommend the internal pouch. The stinging and rawness after each bowel movement were unbearable. I dreaded going to the toilet. I put up with it for many years because I really didn't want the inconvenience of a stoma bag, but in the end, I had to give in to it.

I still have the internal pouch. It was 'disconnected', but frequently, I have a mucus discharge from my back passage, which can be a nuisance. Overall, I am pleased to have the stoma (9 years now). I only get sore on my stomach if I have a leak, and this year, so far, I have not had one. The last time was just before Christmas. This is the longest I have gone without 'trouble'.

vpl

Thanks for your reply, Pottinger. It's good to hear your views as someone who has the Indiana Pouch.

One of the problems the surgeon mentioned I might get was that some people who have the IP get what they call 'short bowel syndrome' after they have some of their bowel made into a bladder, and they get dreadful diarrhea and mucus. It sounds like you are one of the unfortunate ones that suffer from this.

Sometimes it's best to stick with the devil you know.

 
Getting Support in the Ostomy Community with LeeAnne Hayden | Hollister
All times are GMT - 5 Hours