Urostomate - considering continent diversion

[GoldenGirl]

I am so glad to find you all!

I am 35 years old, and have had an ileal conduit urostomy for 32 years. This week, I discovered I may have some kidney damage - I'm scheduled for several tests over the next two weeks and don't see my doc again until the 17th, so I have a long and anxious wait ahead.

I'm thinking I should seriously consider a continent urostomy; I understand the valve prevents the reflux that causes kidney damage over time. Has anyone had a conversion to continent? I'm so shocked right now that I don't even know what questions to ask, but I'd love to know anything you can share about what procedure you feel is best, what the surgery and recovery was like, what it's like to live with one, etc.

thanks in advance!
Goldie

[bhautz]

Not sure if I can help. I'm 43 and had my bladder removed almost a year ago Due to bladder cancer. They removed my bladder and the docs created a neobladder or continent diversion with about 2 feet of my small intestine. I urinate normaly thru my penis, I had to learn how to use my abdominal muscles to do so. I've had no problems as of yet besides leaking and not alot. It has definately gotten better with time. I went from about 5 to 6 male pads a day to 1 to 2 a day. Mostly what comes out now is mucus from the intestine. Hope this helps if you have any ???'s let me know.