Silicone injections into Indiana Pouch opening

[karen1]

Last October, M.D. Anderson performed my cystectomy and created an Indiana Pouch for me. Although six months ago I went back to have silicone injections to reduce the leaking around my pouch opening, the leaking has increased. I was wondering if there are any have undergone this procedure with a similar leaking issues? M.D. Anderson is recommending that I continue with the silicone injections. However, they are expensive and I cannot find anyone who has been injected multiple times resulting in a reduction or elimination of their leaking. If any members have some experience in this area, I would appreciate the opportunity to hear from you. Warmest regards, Karen

[squid56]

My Indiana pouch is starting it's 17th year. Mine still leaks at times and I take Levsin for it as it helps. You will find that it will leak in the 1st year and as time goes on the leaking hopefully will get to be less and less. Th reason mine leaks is because I have IBS in my pouch, as it fills up then it goes into spasms and leaks. Why did you ahve yours taken out? I had Interstitial Cystitis which totally ate away my bladder, so it had to come out. I ahve nbot heard about doing silicone injections. My feeling is if it is not working then why keep doing it?

[SueSueUSA]

Hi Karen,

First of all, I want to say WELCOME to the Board! You will find many friends and a wealth of information here.

I know this might not apply but I will toss it out there anyway. My grandson has a kidney transplant. Plus, he must cath every two hours through a mitrofanoff (nearly 3 years) down below his navel. He was having increasing leakage. They anesthetized him, scoped it and gave him a cologen injection in his mitrofanoff. The procedure is called "Deflux". It has worked very well for him, no intermittent leakage for a few months now!

I hope you find a successful resolution to your situation as well. Keep posting your questions, I am sure that you will find many people who can relate!