Mitrofanoff

[Ladystardust24]

I was born without a bladder, so until I turned 5 I had a urostomy. I don't remember too much from that time, but I do remember hating it. they would always fall off and leak.. urgh. But when I was 5 the surgeon Dr.Hendren this very big kahuna surgeon at my hospital made a bladder using stomach and colon. He also created a mitrofanoff, which is usually located on the lower abdomen, But he decided to do mine this "new" way he thought was best, even though many doctors did not agree, but he's one of these doctors that did things his way no matter how crazy, and usually ended up right. well he made my mitrofanoff and 11 other peoples "anatomically correct" in order to do that things had to be moved around to be able to put the mitrofanoff, his goal was  that in the future somewhere in my teens, i would have reconsturction surgery. Well sadly,  I got some other medical issues which made reconstuction too risky. this surgery had taken away basic things most humans just..have. I was lucky enough to figure way things for myself, but i still feel like there is a part of me somehow missing. Well then I lost my transplant and had to go back in dialysis my mitrofanoff hadn't been used in so long it had closed/fused together. So after months of waiting and agonizing over this surgery, I was getting a  "normal" mitrofanoff on my lower tummy. As vain as it might sound.. I did worry what i'd look like with a hole in my stomach! For this surgery, they made it as easy as possible, the best of the best. my most beloved surgeon..and anaeseologist(sp?) I woke up pain free.. everything went pretty smoothly. So, then I found something out which I did not know before.
there are two procedures: Mitrofanoff and Monti
Mitrofanoff
http://en.wikipedia.org/wiki/Mitrofanoff_procedure

Monti
http://en.wikipedia.org/wiki/Monti_procedure

So since they used my appendix during my mitrofanoff surgery, they were unable to reuse it this time. So they made a Monti instead.

As weird and scary as it sounds.. I really LOVE my new monti! its so much easier to cath and the hole is really barely visable. smaller than a dime! and the catheter goes in smoothly and so easily. I've healed up sooner and better than they even expected! Usually you start cathing 2 weeks after surgery, i was doing so well i got to do it a week or so later! I love it. I know some other people who have mitrofanoffs/montis so it would be cool to talk to others with one.. my best friend Kelle has one too. so yea. hah
much love <3
xoxo

[willowtreewren]

Good news. Now I know what your surgery was!

Aleta

[Brianna!]

I have the same thing as you. Didn't I tell you it would be super small! Mine is low enough, it's covered up with pants and stuff. But they told me it was called an "appendiceal vesicostomy." I had mine done when I was 5 too. The only part I don't like about mine, is that if it gets irratated, it bleeds. since the appendex is all exposed and stuff. I would like to meet people who have the same thing that I have, too.

[Ladystardust24]

Yeahh, mine apparently leaks if it gets too full.. :/ but they said it's not really "leaking" its still healing. soo yeap. haha.

[Brianna!]

Really? Mine leaks sometime too. But that's usually after I cath myself. I should ask if it's leaking because it's too full.

[Ladystardust24]

Hey,

Actually mind does that too. :/ They told me that's pretty normal. (Fun stuff. Really.)

[lainiepop]

Hi, I have this too! I was born with only one scarred kidney and no bladder. I had a urostomy bag when i was 2 and they did my mitrofanoff when i was 8 i think.    My surgeon places it higher up in the abdomen apparently (i don't really understand as the hole where i put the catheter is about a couple inches below my belly button. Anyway ive had it for 30 years now with no issues (except obviously urine infections) and i have a son 4 and daughter 9 mths and the pregnancies didn't affect the bladder either. I'm due to have a live donor transplant on 29th May from my dad, was supposed to be in feb but urologist called it off last minute saying my bladder was in wrong place and it wouldn't connect properly. However they've had lengthy discussions and are going ahead with the transplant. The issue is the kidney will be place almost adjacent to the mitrof, and the tube from kidney to bladder will have to flow about 5cm upwards or sometime and we know usually it flows downwards. Numerous nephs and urologists (including my kidney surgeon) believed it to be fine, as when we lie down in bed we still produce urine and it doesn't  flow down then, more sideways! But my urologist was the one with issue however she's going to assist on tit now but obviously im still quite worried about it all. They said the main problem will be if it causes back flow to the kidney therefore damaging it, and to avoid this i'll need to empty bladder more often and keep catheter in overnight. They said if its not working properly or is causing reflux to new kidney then i'll have to have bladder taken out and urostomy bag back But i know i need kidney more than bladder and apparently the bags are better than they used to be! So i'll just have to see what happens.  Am thinking they're hopeful it'll work tho, cause otherwise they'd just do the transplant and urostomy at same time, and from neph's point of view not damaging my dads kidney is in their interest so if they thought that was the only way they'd tell me it was the only way. I'm just starting to stress big time about it, and im gonna have to be in hopsital longer cause of it all, up to 3 weeks Anyway sorry i kidn of jijacked your thread a bit, i just got excited someone had the same or similar to me, as i hadnt seen it mentioned on here before, and if anyone else has any similar transplant experience id love to hear what happened! Marie x

[Ladystardust24]

No, you're not hijacking anything! I got a message from a woman that was really helpful to hear. I always LOVE hearing from others who have mitrofanoffs! I never meet others. :/


I'm not sure about your exact situation. But I guess I can see your point.

Technically speaking, they usually don't do transplants to those with urostomy bags. Since infection risk is wayy higher. (But yes, UTIs! yippee! Found out I have one now!)

>__<
 

[lainiepop]

Hi, just re-read my post Im actually 30 not had the mitrof for 30 yrs lol, more like 22 Still makes me sound pretty old tho haha!

They never mentioned infection to me regarding the urostomy, in fact urologist mentioned opposite, as the anti rejection drugs will make me more prone to utis which sucks as i had one last week (hadnt had one for 7 mths b4 that so dont like to think i'll be getting them as often as once a mth )

anyway wiill see what happens what will be will be am feeling more positive now with transplant only 5weeks away and my neph is confident it'll work out anyway but if not got the back up plan!

[MomoMcSleepy]

Really? Mine leaks sometime too. But that's usually after I cath myself. I should ask if it's leaking because it's too full.

ok, I had this problem when my mitrofanoff was still open.  When the urine flow stops and you're ready to pull the catheter off, either pinch off the catheter like a over, or block off the end like a straw.  You have to finesse it when you pull it out, but pull it out, and tip it towards the toilet upside-down, or just release your pinch once it's out, and let the extra pee out of the catheter into the toilet.  If you do this, then you will not have leftover pee in the area between the valve and the surface of your abdomen,  if that's what's causing the problem.  I did also have mucus that would leak out, though.  Although I got a different urostomy in 2003, every month or so, stuff leaks out of my old mitrofanoff that has been building up, and it's pretty disgusting.  There's a small stone in there or something, irritating the mucosa, and it's not worth messing with, according to my surgeon.

My "continent" buari flap (like a leakable mitrofanoff, supposed to leak if over-full) leaks a ton.  They think because they made my bladder augmentation out of my colon, and it spasms, pushing out the pee.. They are not totally sure why it leaks, but it's not the valve, that is working as it should, supposedly. 

Yeah, ask if it's supposed to leak if over-full.  My mitrofanoff wouldn't, and that caused problems when I couldn't get the catheter in cause of scar tissue.. How often are you voiding?  Can you feel it when it's full ?  (I bet you've been asked those questions before, lol).