Mitrofanoff and bladder denervation

[pelztier86]

hi,

I don't have ic but a severe emptying and storage dysfuncion of the bladder and uretrha.
The cause of the bladder issues is my underlying disease which is a severe chronic gut motility disease (proper peristalsis is not there)

I have now been offered the option of getting a Mitrofanoff, along with a bladder or maybe even pelvic denervation in hope that the pain will subside and the bladder capacity increase. This would enable them to use the bladder as a simple storage organ while creating a Mitrofanoff channel for catheterization.

Has anyone heard of or had these procedures done?
Also - anyone who has a Mitrofanoff - do you know if the jejunum can be used instead of the bowel segments usually used for the construction? For my bowel issues use of a jejunual segment would be better.

Total removal or augmentation of the bladder is rather risky with my bowel isses but a simple Mitrofanoff procedure would not work due to the pain and the little capacity.

Also, did you notice any change in bowel habits after the procedure?

thanks
Sarah

[GatorGirl]

Questions

I'm doing as much research as I can before I get my bladder removed and i was wondering what these procedures are and what they're for? I've suffered from IC for 6 years but the last 2 have been excruciating pain with zero quality of life. I need as much information as possible.

[Judith56]

Peltzier. I am familiar with those procedures. Because you do not have IC most likely the results you get from these surgeries will be different than for an IC patient. IN fact while I am not a doctor I have a feeling that you may have more success with them because you do not have IC affecting your bladder or other organs.I would highly suggest you check out the UOAA (United Ostomy Assosication) web site and message board. I bet you will find others on there who also have the same problems that you have and van give you a more realistic answers.

[Dimka]

at the end of my rope

Hi, everyone I have had IC for 4 years now. Its been getting progressively worse. My bladder capacity is 90 cc now. I have this horrible urgency feeling all the time that comes with a frequency. I also have lots of urethral discomfort. I went through all possible treatments including instillations, thousands of different meds, 2 trials of interstim, botox and all kinds of alternative medicine. Nothing has helped. I suffer greatly every single day and night.
I had to go on disability because of IC,have a very hard time raising my 7 year old daughter and my parents are exhausted by helping me. I also lost all my friends and my boyfriend due to this horrific disease.
I am at the point where I really dont want to live any more. As my last chance I am considering getting an Indiana Pouch. But I cant find a doctor who would agree to do such a surgery, mostly because they consider me too young(38years old) and dont want to take resposibilities.
I've researched everything there is about the procedure and I am very scared. On the other hand I cant continue living with IC, disabled and housebound. I've been reading your post here for a long long time, but this is my first one. How do you find a surgeon to do it? I live in Massachusets and pretty much the ones I've gone to are reluctant to do it.
I am very depressed because I lost my last hope.
Could you gyus help me? I would also love to chat with Judith and Kara who've been through the surgeries.

Any replies are appreciated
Thanks
Yelena

[Judith56]

Yelena, I did not have to find a surgeon to do the surgery- I was told I really had no choice. When I had my bladder taken out my functional capacity was 30 cc's. I was 30 years old at the time with 2 young sons, so I do understand what you are feeling. I guess my best advice is to keep getting other opinions, and if possible go to some of the top rated IC uros recommended on this site and see what they can offer you.

[Dimka]

at the end of my rope

Thank you for the reply, Judith. In the past 4 years I went to probably about 25 uros. None of them has anything more to offer... Of course they are not the ones suffering. I never thought it would be so hard to find a surgeon. I really dont know what to do anymore. I am so depressed and tired of being sick and living in the bathroom and emergency rooms.
I almost wish I had cancer so there are would be no questions about taking my bladder out.
I am very happy for you, Judith, that your surgery turned out to be successful in the long run.
Take care
Yelena

[KristinKathryn]

Yelena:

How are you now?