UOAA Discussion Board

Hi Everyone,
I am having a contient diversion placed in November, due to dysfunctional bladder.
I am WILLING having it done for urine retention. My volumes are 700-800 cc without any urge. It will not stop the incontience problem through.

He will take my appendix attache it to the bladder, and create a stoma by my naval. If the appendix is to short he will use some bowel The Dr and I are aware it probably most likely be a difficult procedure. I have pelvic wall adhesions, and colon and bladder are compressed.

I think they call this the mitro diversion? Does anyone know if the bladder and urethra are left in, is there a chance the incont will stop? My urine says no.


I do not like to ISC for the rest of my life, with my bladder being stretched out now for 17 years, the chance of shrinking it back to normal size without any urge. Will never happen.

So I am taking the plunge. I know this is no picinic but, I want to mange this bladder easy were I can see the stoma, and get to it and so can anyone else taking care of me has I age and go through life.

Thanks for listening and reading my plea. If anyone knows anything about this procedure let me know. Dr. Burks at Henry Ford hospital in Detroit Mich is doing the procedure.

Thanks, Sally

Hi sal50,

The full name of the procedure you are describing is "Mitrofanoff" . Now you can use that word to do a bit more searching on the Internet if you wish. One article with some details is at this link:
http://en.wikipedia.org/wiki/Mitrofanoff_procedure

I know quite a few teens who have it and who do very well. Their reasons for having it are mostly due to a neurogenic bladder (one that doesn't get the nerve impulse to empty) or bladder exstrophy, a birth anomaly that leaves them incontinent. If you are interested, I may be able to connect you with one of them for some discussion of the every-day living-with-it aspects. You can send me an email or private message.

Thanks for visiting here .... we hope you will drop in often as you are proceding through this experience, and maybe even stay around to help others with what you are learning.

Linda

Hello!!!

I'm one of the teens Linda was talking about. I've had my mitrofanoff since I was 4, which equals me having it for 15 years at this point.

My diagnosis is Cloaca, which is like Bladder Extrophy, but not.. The difference is in extrophy, the body parts are mixed up on the outside. mine were on the inside, so we didn't know i had issues, till the doc's and my parents realized i had no anus.

What kind of questions do you have?

I could not have a Mit- cause my ileo-conduit was way to early before they stsrted doing those Plus They tried alot of other thing on me and I didnot have any spare parts for them to use to try that operation. so I am stuck with Ileo-conduit. Which I do not Mind.


DebbieD

I have an Indiana pouch, so both my bladder and urethra are gone. I originally had an ileal conduit and then switched over. I love my pouch It is now 16 years old.
I am curious why your uro does not at least remove the urethra, then at least you couldn't leak. Before my bladder was taken out I leaked too, so I know how awful it is. I had a disease called Interstitial Cystitis, it destroyed my bladder, so by the time it was taken out I could only hold 30 cc's. Good luck wih the surgery, let us know if we can be of help with questions etc.

Thanks all for being so nice and supportive and giving me your personnal histroy and your experiences.

It means a lot:

I am concerned that after the mitrofanoff goes in that i will still leak because i still have my urethra and bladder. This Uro wants to leave that in has a back up syst

Take care all : I will keep you posted.
Sally [/i]

I still have mine as a backup system.. and I don't leak from there..

If i don't cath when I feel I need to, I leak from the mitrofanoff...

Well All,
My big day for the Mitrofanoff is 11/10/08.
I will keep everyone posted because, I feel it is important that we LEARN FROM EACH OTHER ALONG WITH SUPPORTING EACH OTHER!

Thanks for listening and supporting. I feel like I have a good handle on how the procedure will go. This decision did not come easy and it has been 17 years of disappointment, despair, failure of numerous treatment, and tons of mental stress!

So, when I get depressed about it all remind me in the long rest of my life picture, This is the best decision. My bladder does not work anymore and at 50 it never will!

Take care, Sally