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Ileal conduit to Indiana Pouch - worth changing?

Posted by vpl, on Thu Mar 12, 2015 9:33 am
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 of some of the problems I have been experiencing following this operation and he ask 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 a turmoil as to whether to leave well enough alone and to put up with my bag and its problems or to go through more surgery and experance 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.
Reply by Mrs.A, on Wed Mar 18, 2015 2:25 pm

Wow, I see now why there are 100 views and no replies, this is a something only someone with more understanding of the situtation 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.

Reply by vpl, on Tue May 19, 2015 6:21 am
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 specialises 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
Reply by Past Member, on Tue May 19, 2015 7:02 am

Personally I wouldn't recomend the internal pouch, the stinging and rawness after each bowel movement was 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 had to give in to it. 

I still have the internal pouch, it was 'disconected', but frequently I have a mucus discharge from my back passage, which can be a nuisance,overall I am pleased to have the stoma, (9years 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 being just before Christmas. This is the longest I have gone without 'trouble'. 

Reply by vpl, on Tue May 19, 2015 1:47 pm

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 made get what they call  'short bowel syndrome' after they have some of their bowel made into a bladder and they get dreadful diarrhoea 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.

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