12 replies to this topic

[Deej]

Hi,

I'm 12 and half years post injury and have just found this great site - can't believe I have not come across it before.

I am trying to find out about the mitrofanoff stoma - does anyone out there have one and can you give me some info on the procedure and if you are having any complications etc.

Any info would be much appreciated. Thanx.

Congrats on a great site too !

[cdngrl]

i've just had my testing done and i am seeing the doctor in febuary from what i understand there isn't much of a stoma more like an incision

[Deej]

cdngrl, on Nov 18 2006, 07:50 PM, said:

i've just had my testing done and i am seeing the doctor in febuary from what i understand there isn't much of a stoma more like an incision

Thanks for the reply. What did the testing involve?

[cdngrl]

Simple bladder test of size and capacity, pressure. The usual questions about incontance
Now mind you this was all done through my spinal cord doctor. I will not be seeing the actual urologist until Febuary. They're going to take my gall bladder and stretch it so it forms a tube that I can insert the catheter in. You don't have to have your gall bladder to have this done, they can take several different approaches.

[Survivor35]

this is the first time I have ever heard of this process. Could somebody tell me a little more about it? I googled it, and understand the theory, but I am curious as to who they would recommend this procedure for, how the decide who its right for? help, I'm confused....

[Deej]

Survivor35, on Nov 19 2006, 02:37 AM, said:

this is the first time I have ever heard of this process. Could somebody tell me a little more about it? I googled it, and understand the theory, but I am curious as to who they would recommend this procedure for, how the decide who its right for? help, I'm confused....

As far as I have found out it seems to be mostly used for kids with bladder problems, and people with spina bifida, though I have read about some SCI having had it done with some success. It gets away from an indwelling catheter for those who are unable/have trouble with intermittent urethral self cath (like me!), and involves having a channel made between the bladder and the abdominal wall to create a new opening into which you can self cath. The channel I believe can be made from a number of 'body parts' - appendix, fallopian tube, colon, though I had never heard of them using the gall bladder before now.

I have been looking into this option as I have tried self cathing urethrally several times to no avail and am beginning to worry about bladder tumours now I have had an indwelling catheter for the best part of 12 and half years, though I am lucky I have very few infections and hardly ever leak. Anyway my spinal urologist does not seem keen on the mitrofanoff, but I'm not sure if that is just because he has only been involved with 2 people who have had this procedure previously and both had problems. I'm having difficulty finding out if there is a urologist in the UK who is performing this procedure regularly.

[cdngrl]

my sci doc was all for it. it's basically a new procedure on sci patients. i can not self cath...i wont get a indwelling cath 4 my and my husbands own reasons. if the procedure does not go as well as hoped i can always go back to my intermittet cath.

[Deej]

cdngrl, on Nov 19 2006, 03:46 PM, said:

my sci doc was all for it. it's basically a new procedure on sci patients. i can not self cath...i wont get a indwelling cath 4 my and my husbands own reasons. if the procedure does not go as well as hoped i can always go back to my intermittet cath.

Please keep me updated on how you get on when you see the urologist- I would be very interested to hear all about it !!

[cdngrl]

i will i'll be sure to post how everything goes.

[Deej]

Me again !

There must be some more people out there with experience or knowledge of the Mitrofanoff procedure. Can anybody give me any more info/ horror stories ? I would be most interested to hear any UK experiences.

Anybody ?????

[AnnMarie]

So Im confused, is the mitrofanoff stoma for intermittant cathing and a suprapubic is for indwelling? My boyfriend has a suprapubic that was just placed this past august but ive never heard of the mitrofanoff.

[cdngrl]

In the Mitrofanoff procedure, the appendix is removed, as well as a 3-4 cm cuff that is removed from the cecum to allow proper length in case the appendix is too short.The appendix is then thoroughly ‘sterilized’ with water and then is used as a channel between the bladder and the exterior wall of the abdomen. The person then catheterizes himself or herself through the stoma that the surgeon has created.After bladder restructuring surgery and the Mitrofanoff procedure, the patient can expect a horizontal incision along the length of the abdomen.The size of the incision depends on whether bowel or stomach tissue is used.A suprapubic tube,as well as a catheter at the site of the stoma (umbilicus) will be in place for about three weeks to allow the sites to heal and to drain the urine from the newly enlarged or constructed bladder.This will both be removed at about the same time. There may also be some bladder spasms after surgery while the bladder heals.Ditropan may be prescribed to control these spasms.

The Stoma
The stoma through which the bladder by means of the appendix tissue is joined to the abdominal wall is a simple one.It does not have a bud, like a regular ostomy has. It is sutured to the skin and is plumb with the skin of the abdomen. Presently to make the stoma almost unnoticeable, urinary surgeons bring the stoma out at the umbilicus (belly button).

The Appendix
The vermiform appendix is a narrow tube that is attached to the cecum the very first part of the large intestine.Its layers and interior are the same as found in the intestine. It can be 2 to 20 cm in length but usually averages about 9 cm The appendix is not a necessary appendage and so can be removed and used for other purposes. It is the best option for use in the Mitrofanoff procedure. To achieve satisfactory results, careful patient selection is essential.It is desirable to have highly motivated patients with realistic expectations and normal intelligence who are physically and emotionally capable of dealing with the strict regimen of clean intermittent catheterization so as not to jeopardize the entire procedure.



http://www.bcchildre...ff20poster1.pdf


Try this link for pics

Edited by cdngrl, 03 December 2006 - 09:00 PM.

[AZ_PTA]

I know that there are several female quads here in the states and one in canda that has had this procedure done. They love it! Ash has an superpubic cath, and has gone for the test to see if she is apporiate for the procedure.