strongly considering a continent urostomy

[superauntie]

Hi! I asked this question in the general forum and they suggested that I ask here for more advice.

I have had a mitrofanoff that was fashioned with my appendix and is in my belly button for about 4 years now. The past 3 years, however, have been horrible with it leaking a lot in between me cathing. Its almost as if my bladder is forcefully shooting urine through my belly button, even though my bladder capacity is normal. The only positive thing about the mitrofanoff is that it stoped my kidney reflux and bladder infections dramatically, and its easier for me to cath while still in my wheelchair. My urologist has had me on every bladder medicine on the market including Imipramine (which is an antidepressant), as well as Botox injection in the bladder. But, nothing has helped. I am getting sick of having to wear a beltless undergarment pad over my abdomen to catch these leaks. My urologist doesn't want me to get a bladder augmentation, due to the risk of short bowel syndrome and stuff, but I don't know what else to do.

I was wondering if anyone has had a continent urostomy done or had a mitrofanoff revised enough that their leaks stoped. I am really timid of getting a total urostomy, because of the risks I have read about that you can wind up with renal failure due to kidney reflux.

If anyone can give me some information or personal experiences, it would really help me out! Thanks!

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

[sal50]

Hi

After my failed mitrofanoff. I had a bladder augmentation with a monti cathterizable stoma placed. I empty my bladder through my naval. My urologist used 30 cm of ilium from my small bowel to enlarge my bladder and create my stoma.


I was told by a uro surgeon that very little small bowel was used and 8 months after the surgery I have NO SHORT GUT SYNDROME. There are some people that did have this complication after there bladder augmentation
Due to my adhesions I still have my constipation problems I have always had, no change or improvement with my bowel issues.. There will be mucus in your bladder because the small bowel has mucus that lines the inside of the small bowel it is important that you drink a lot of water. At this point I hardly irrigate now, but I do drink a lot of water. Infections so far not any. Sometimes my stoma will leak some for unknown reasons but it is very little considering how much urine I USE TO LEAK FROM MY BLADDER! I now just put a gauze over it and am dry most the day. I had this surgery and it was a very hard decision to make and I was really scared at the time. But, now it is a total gift.

I hope this helps, and if you have any more questions you can pm me. It is not easy dealing with a bladder that does not function no matter what the reason is. I could NOT STAND peeing on myself and wearing diapers for me worth the risk.

Take care,
Sally

[superauntie]

Hi

After my failed mitrofanoff. I had a bladder augmentation with a monti cathterizable stoma placed. I empty my bladder through my naval. My urologist used 30 cm of ilium from my small bowel to enlarge my bladder and create my stoma.


I was told by a uro surgeon that very little small bowel was used and 8 months after the surgery I have NO SHORT GUT SYNDROME. There are some people that did have this complication after there bladder augmentation
Due to my adhesions I still have my constipation problems I have always had, no change or improvement with my bowel issues.. There will be mucus in your bladder because the small bowel has mucus that lines the inside of the small bowel it is important that you drink a lot of water. At this point I hardly irrigate now, but I do drink a lot of water. Infections so far not any. Sometimes my stoma will leak some for unknown reasons but it is very little considering how much urine I USE TO LEAK FROM MY BLADDER! I now just put a gauze over it and am dry most the day. I had this surgery and it was a very hard decision to make and I was really scared at the time. But, now it is a total gift.

I hope this helps, and if you have any more questions you can pm me. It is not easy dealing with a bladder that does not function no matter what the reason is. I could NOT STAND peeing on myself and wearing diapers for me worth the risk.

Take care,
Sally

Thanks for the advice! I too was a bit questioning at how much ileum they use for a bladder augmentation. Since I no longer have a colon, they can't use that, and my urologist said that I could either have it done with my small intestine or stomach. He favors the small intestine more than the stomach, because the patch lasts longer.
I am just getting so sick of these accidents through my mitrofanoff stoma. Even though I am able to wear underwear during the day, I still have to use a large pad over my abdomen to catch any leaks from my mitrofanoff, which makes my belly look even bigger than it is. I have never been continent at night since high school, when I started to have problem with a neurogenic bladder, so I wear adult cloth diapers during the night.

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

[JustJules]

Hi All, have been reading about the Mitrofanoff's... I had one done last year fully believing that this would cure the incontinence and would be able to lead a reasonably "normal" life.

Sorry to say it hasn't been that successful. I've had 8 infections,one dilation and waiting for an appointment for another dilation.The hospitals dont rush themselves with these appointments even though I'm now down to a 10fr!!! and have big problems flushing and draining fully due to so much mucous.

I have also now developed Fybromyalgia and most days my hands wont do what I want them to . I'm now waiting to have the Mitrofanoff ? reversed and just have a supra pubic which hopefully will be easier to look after.

Has anyone else had this procedure done?

Julie x

[superauntie]

Hi All, have been reading about the Mitrofanoff's... I had one done last year fully believing that this would cure the incontinence and would be able to lead a reasonably "normal" life.

Sorry to say it hasn't been that successful. I've had 8 infections,one dilation and waiting for an appointment for another dilation.The hospitals dont rush themselves with these appointments even though I'm now down to a 10fr!!! and have big problems flushing and draining fully due to so much mucous.

I have also now developed Fybromyalgia and most days my hands wont do what I want them to . I'm now waiting to have the Mitrofanoff ? reversed and just have a supra pubic which hopefully will be easier to look after.

Has anyone else had this procedure done?

Julie x

Hi Julie,

I should mention to you that usually urologists have you have a urodynamics test done more often if you have a supra pubic catheter in all the time, just to make sure there is not significant shrinking of your bladder that would require something like Botox injections or a bladder augmentation. I had a friend who had a suprapubic catheter in for a while, but was on Pyridium all the time, because of how uncomfortable it was for her. I've only had them in for surgeries, not full time. Right now, my doctor took me off of all of my bladder medicine for a month, in hopes that it will make my body use it more effectively when I get put back on it and stop the accidents. If this doesn't work, he's gonna refer me to the University of WA medical center for surgical options.

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

[JustJules]

Thanks for replying Jessie x

I did have bladder augmentation as well as Mitrofanoff.. my bladder was way too small and very irritable too.
Having had all usual Urodynamics etc. I was asked if I would go on a "trial" for a new method of controlling incontinence, happy to help etc after a long time with physio etc.

I had a minor surgery with Zuidex injection to neck of urethra to bulk it out, bit like Botox. anyway to cut a long story short
it went in incorrect place. !!!!It seemed only way of ending incontinence etc was to be the mitrofanoff. But now that i have so many other health problems I have asked for an easier stoma/supra pubic and it seems the supra pubic has won.. I'm 49 and angry that i should be this way. I have tried to sue for negligence but no luck so far.

So sorry to rant and rave.. feel a bit better now

Julie x

[Melanie]

hi. I'm now 20 (21 in Aug). I've had my Mitrofanoff since I was 4, and I've never had an issue. i get kidney infections, but i also have chronic kidney disease... Also, I leak if i don't cath enough, but nothing major like what I've read here.

I hate to just "barge" in, but there are "success" stories with the Mitrofanoff.