Continent Urinary Stoma Surgery

[emily]

I haven't posted on the discussion board in a while but I've had some new developments and would like some opinions.

Backstory: I'm 22 years old and I was born with several deformities, I have had my colostomy since I was born and have had to wear Depends due to urinary incontinence.

I've talked to a urologist to make a continent diversion (I think that's what it's called ) and he's set a surgery date to do the following:

Bladder neck reconstruction
Bladder neck sling (rectus fascia)
Bilateral ureteral re-implantation
Creation of catheterizable bladder stoma from appendix or intestine
Possible bladder augmentation (not likely but just in case they get in there and my bladder is smaller than they thought.)

Has anyone here had anything like that done? My doctor said the surgery can take anywhere from 4-5 hours to 12 hours depending on what he finds when he opens me up. If you've had this (or something similar) done would you share your story? I would really appreciate it, I'm 100% confident that this is what I want but I would like to hear others stories.

Thank you!

[squid56]

I have a continent internal pouch and a stoma which I catheterize several times a day to drain the urine. I initially had the ileal conduit and when they created that they took out my bladder and urethra because they were diseased and could no longer function. My stoma is very tiny and it is down low on my abdomen. I just keep it covered with gauze and tape because it spits out mucus at times. I love what I have- I have had this internal pouch since `1992. It is a HUGE surgery and it does take time to recover from it. You will have to "train" the pouch to hold increasing amounts of urine and most likely in the beginning you will follow a pretty strict schedule of when to cath it. Its all worth it once the training is over. For me it is as close to being "normal" as one can be with out a bladder. Let me know if there are any questions I can answer. Judth