[tmclarty]

Hi everyone,

I am a 38 year old female, 8 months post injury, level C8 complete, with most use of my arms. I am having a very difficult time managing my bladder care. I am incontinent much of the time, trying to do intermittent cath about every 4 hours, wearing Depends and wetting between caths. I also wet the bed a lot of nights. I have become so worried about peeing myself while I am out that I am not drinking near enough water and I think I am becoming dehydrated. My skin is showing signs of it and my lips are very dry and peeling.
I saw something online somewhere regarding the Mitrafanoff procedure, where the bladder drainage is rerouted, and you are able to cath somewhere in the abdomen --- Much Easier! I asked my urologist about it, and he just said, "No." Apparently all his patients who had it done in the past are now coming to him asking to have it reversed. He couldn't (or wouldn't) tell me why they are now unhappy. I asked my rehab doctor to refer me to someone else so I could get a second opinion, and I am still waiting. In the meantime I thought I would ask everyone here for any information you can give me. Has anyone had this procedure done? I would really appreciate any feedback so I can make an informed decision on my own. Thank you very much.

Tara

[Deej]

Hi Tara,

Sorry to hear you are having such problems. Did you try to do a 'search' for mitrofanoff on here - the subject has come up previously, and without going over old ground, you will probably find the info you seek in one of those previous posts. There is a least one forum member who has had this procedure done. Might be worth PM'ing her if you have specific questions.

Best of luck in your research.

[Izziwhizzi]

Deej, on Jun 10 2007, 11:04 AM, said:

Hi Tara,

Sorry to hear you are having such problems. Did you try to do a 'search' for mitrofanoff on here - the subject has come up previously, and without going over old ground, you will probably find the info you seek in one of those previous posts. There is a least one forum member who has had this procedure done. Might be worth PM'ing her if you have specific questions.

Best of luck in your research.

Hi Tara

A bit like deej I've seen a C7/8 about whos had it done on this site and loves it, and another C5/6 due for the op later in the year.

However, and a font of amazing sci medical knowledge and plenty of info on the procedure, have you tried:

http://sci.rutgers.edu/forum/index.php

I both love and hate the place. I love the info it offers and also hate some news it delivers.

Hope you stay around on site, its a fairly friendly place to drop into.

L xx

[zippedup]

helo tara,

i have a mitrofanoff. im 32. please feel free to email me or u are welcome to join my mitrofanoff support group to ask others of their experiences.

mitrofanoff support group

jen

[1heart4u]

Tara

I was also inquiring about the mitofanoff procedure. However I referred to it as a stoma port.
I did not receive any replies. I finally sent a personal email to EMHope. She is a member.
She has had this procedure done, however she described the port below the belly button. I would suggest sending her a personal email and ask her about her procedure. She seems very happy with the results and her ability to intermittant cath. I am also looking into this procedure, because not matter how hard I try I can not get my pants back up after I cath. From the description of the location of the port it seems it would make IC much easier.
Hope you find the information you are looking for.

Kris

[Nichole]

Hi Tara.
Have you tried any of the medicine for the bladder leakage? I was having some problems right after I was first injured, and they prescribed me Detrol. Since then I've had absolutely no problems.

[wheels5894]

Fancy the idea of a supra-pubic catheter? This remains in a hole in the abdomen and can either drain into a bag or have a valve to drain every few hours. A draining catheter connected to a leg bag will normally keep the bladder empty and solve the problem. Usually you are given Detrol or something similar to reduce bladder spasms. Why not ask your doctor.

[Embarrassing footnote: I wet the bed a bit last night; the catheter blocked! Bother!]

[Caliente]

My daughter (who is 15) had a mitrofanoff procedure done in May. She now cath's through her belly button every three to four hours. She still gets the occasional wetness in between (things are still settling down), but on the whole it appears to have been successful.