surgey upcoming

Kurt-RI · Post by **Kurt-RI** » 2008-09-20 14:26:21

Hi, I'm new to this board, so let me preface this message by giving you a little bit of information about myself. I just turned 28 yesterday. I was born with classic bladder exstrophy. I had the BNR done when I was almost 8. I had major scar tissue complications with that, but that is unimportant right now. Let's skip ahead to 2002 I had a scar revision done and almost died after losing over a liter of blood from nternal bleeding, and the resulting swelling caused the BNR to I became incontinent at night for the next 6 years, and leaked alot during the day. Now onto 2008. I had a mitrofanoff done at Johns Hopkins, and again there were majo complications. I ended up spending six weeks in the hospital, and came home with two nephrostomy tubes, a stoma foley, and a supra pubic tube. A month or so later I had the tubes removed and was switched to a temporary urostomy. It took me 1.5 months to find one that did not leak, because the hole is more of an open wound than an actual ostomy. Anyhow as of right now I'm waiting for a date to complete the mit. I just wanted to introduce myself BRIEFLY, but briefly turned into lengthy, and that was just a short summary skipping over tons of details. Anyway thanks for reading this. -Kurt-

squid56 · Post by **squid56** » 2008-09-21 21:15:25

Just wanted to say Happy Birthday! and also welcome to the board

I have an internal urostomy pouch, it is 16 years old and before that I had an ileal conduit for 6 years.

Wrinkles · Post by **Wrinkles** » 2008-09-26 12:20:30

Welcome to the group Kurt...I have a urostomy and a colostomy....haven't had any leaks with either...uro is 5 months old colo is 4 years old....do have a sore spot around stoma of uro...waiting to see plastic surgeon sohe can draw the skin over the wound....
Lizzy

10french · Post by **10french** » 2008-10-03 21:52:40

Kurt,
I was born with bladder exstrophy too. I'm 39 now. In 1994, after I had my second child, I needed a revision and went for the Indiana pouch. I've been happy with it but my kidneys are constantly infected. Are you having the same problem. And, if so, what steps do you take to keep your kidneys healthy?

Best,

Barbara in CA