UOAA Discussion Board

Hi all,
Has anyone had a mitrofanoff, Indiana pouch urostomy for nerve damage causing voiding dysfunction? I have had bladder damage since a radical hysterectomy 17 years ao;
Medications, 4 inter-stims, have been unsuccessful in treating my urine incontience and retention. my urodynamics showed no urge and a volume of 1100cc.
I now have to do ISC for the urine retention.
I have been told at 50 that the nerves will not. improve. I want control over this urge incontience that I can not seem to get.

Many URO do not agree with a diversion. To add to the problem I have alot of pelvic wall adhesions, I gauss my bowel is twisted and lays on top of my bladder.

I did find two Uro who would put in a cont diversion Cleveland Clinic, and John Hopkins.

If any one knows of a surgeon that is good in pelvic wall reconstruction, and cont diversion placement please let me know.

Very tired, very stressed................... [/b]

I had my internal urostomy pouch done for interstitial cystitis. I actually started out with teh standard oleal conduit, but I ahd problems with it and converted to my pouch. It is now over 16 yearfs old and I love it. When I still had my bladder one of the problems was incontinence- I wasn't even aware when it was happening until I felt my pants be wet. My quality of life is wonderful, I basically can do pretty much anything. I would be happy to answer any questions you might have. Judith

Thanks Judith,
you made me feel better. my incont keeps occuring even when i am walking. sometimes sitting, urine just pours out.
Do you know of any good Dr. that met put in a urostomy of any kind. So far most only put them in for bladder cancer.
Who put yours in?

my quality of life the last two years has been terrible.

Let me know. Many, Many Thanks

I had my surgery for my pouch done at Lahey Clinic in Burlington Mass. My original surgery was done in NYC at Columbia Presbyterian, but the uro there is no longer in practice. I am very happy with my experieinces at Lahey.

sal50 I have had almost the same sort of problem of nerve damage with servere incontinence and of course nothing would show on the urodynamics during the test but yet they new there was nerve damage and I had 4 interstim 8 sling surgeries, colagen, duraplast and other things to say a few. Now I finally had my diversion on Jan 14 of this year it was the best thing for me to have finally have talked the doctor into doing it. It was a very painfull and trying first 4 months but it was still worth every minute of pain and problems that I have experienced. The only thing is that I can not get rid of the staff infection that I have had in my pouch since the end of May. I have finally been approved to be able to change my caths everyday to see if it will cut down on the infection. My doctor has also left Chapel Hill, NC and moved to CA so now I am in desperate need of a new Urologist. So if you are able to find a doctor that will do the diversion and you like him/her I would get it done but listen to what he has to say about the surgery and ask lots of questions. Laura

Finding surgeons is so difficult. your GI dr can't recommend anyone for you that he/she'd trust?

I've had a mitrofanoff since 2006, and have found it very easy to cath through, especially since I use a wheelchair all the time. This procedure is mostly done on kids with spina bifida or people with spinal cord injuries, to make it easier to cath sitting down, as well as to help reduce kidney reflux. They usually use your appendix for the mitrofanoff. If you've had your appendix taken out, they use a piece of large intestine.
Basically, they attach one end of your appendix to your bladder and the other end to your belly button (some doctors will put the stoma on the right side of your body rather than your belly button). You have a Foley catheter in for about 2-3 weeks and a tube in your mitrofanoff for the same length of time to keep it open. After they take the tubes out, the doctor teaches you how to cath and gives you a time sheet on how often you should cath in the beginning.
The only thing I had to do was switch the French size of the catheters I was using from a 14 to a 12, plus I also started using hydrophillic catheters, because they were easier to get into the mitrofanoff (these catheters have the lubricant already on them and its activated with water). I have been using LoFric catheters and will not use any other catheter. If you go to www.lofric.com, the company can send you brochures on their catheters and the mitrofanoff procedure.
The only downside to my surgery was that I had to stay on bladder medicine, because of the accidents I kept getting (and still get due to high bladder pressure).

As far a doctors, I have not heard of doctors only doing a mitrofanoff in people with bladder cancer. If you live near WA State, you might want to check with some of the doctors there. My doctor, Kevin Gandhi is in Puyallup, WA and he is excellent! My former uro, Fancis Kim in Tacoma, WA also assisted with my surgery. PM me if you need their phone numbers.

Jessie
(ileostomy since 1/08 and mitrofanoff since 5/06)