A Mitrofanoff procedure, or Appendo Vesicostomy is a surgery that creates a catheterizable channel, an alternative to cathing through the urethra. The channel goes from the bladder to the abdominal wall, usually through the belly button.
For me it’s really a lot easier, it’s a lot safer, I get a lot less infections with the Mitrofanoff. Sometimes I’ll still feel a little bit of pain – it’s almost as if there’s a nerve connected between the belly button and the urethra, it just kind of hurts a little bit like it did before, but I don’t know why! They’re not directly contacted.
But it’s less painful. And because it’s a lot easier, I actually have less accidents. If I miss cathing, I might leak a little out of my belly button, but other than that…I don’t leak a huge amount like I did before.
Matthew, age 19
There has to be an easier way
Matthew: They didn’t think of using the Mitrofanoff until recently…or maybe it wasn’t invented, who knows?
Dad: I think it’s made everything a lot easier for him.
Matthew: Well, I was thinking, “There has to be an easier way, because I really hate this. There has to be some other way!” They probably started talking about the Mitrofanoff procedure about two years ago. My doctor talked to us about it and at first I was kind of skeptical. I wasn’t quite sure what to think! But we decided to go with it. It sounded kind of funny – a cath out of my belly button, that sounds interesting…
Matthew, age 19
Just happy all the other stuff was gone
I guess the thing that made me feel better was that they could put it through the navel on the stomach. Because the scars bother me, and the idea of having the appearance of something different kind of bothered me, so that they could do that helped.
By the time I actually saw the stoma I’d had a lot of gauze and tape for a while, for a few weeks at least, and I had actually had a tube in me for a few months before that. So I think by the time I saw it I was just happy that all the other stuff was gone.
Johanna, age 22
Definitely worth it
The only part I remember was when my doctor wanted to do the surgery. I felt relieved because it was a better way to cath without being uncomfortable. It was a big experience, a little frightening, but towards the end I was happy that it was done and over with.
Now there’s no more leaking like before. More comfortable, definitely worth it!… It was basically like learning how to cath myself all over again, just a new way. It was hard at first and then I got the hang of it.
My parents helped me. They had to learn how to do it first, and then they taught me.
Ethan, age 13
It’s pretty easy. It’s much better. It’s more comfortable. You can barely tell. Usually when going swimming or something you kind of worry if people are going to say, “What’s that?” but its not that noticeable.
Dylan, age 16
Is it uncomfortable?
I didn’t want to cath very often. It wasn’t too good, very uncomfortable. I didn’t do it much at all…
The doctor told me all about the Mitrofanoff when I came in. I was like, “Well, that sounds a lot better.” And I asked, “Is it uncomfortable like the other one?” and he said, “Absolutely not.” So I said, “Anything to get me to not have to do that again.”
… I remember in the beginning I thought it was going to be a simple thing, because I’ve had my appendix out, I’ve had all those tests – but I didn’t think it would be anything like it really was. Obviously they knock you and everything, so the procedure wasn’t that bad…then once you get out, oof! It was a little more than I thought! I couldn’t even really walk for a couple days, just kind of sitting around trying to get my legs to work again. I didn’t know it would be like that at all. I remember not being able to laugh, too. It hurt, it hurt a lot.
Dylan, age 16
It kind of almost closes up
Sometimes it won’t work as well and I get a little nervous, because if you don’t cath often enough, the stoma kind of almost closes up a little bit. So if you don’t do it for long enough, it’s harder to get it in. And the doctors taught me all these tricks to get it to work better, like being nice and relaxed and a few other things, to aim it the right way.
The doctors can usually get it in, though. It got me a little angry sometimes, because I wouldn’t be able to get it in for like a day. For a day they’ll let you keep trying, and then if you still can’t get it in, you have to go in the next day – because otherwise it can actually close up all the way.
So you come in the next day and they can get it in like it’s no problem, and I get all angry! It was frustrating, but I’ve been doing much better now, so it’s not too bad.
Dylan, age 16
Cathing through a stoma
Alex: It’s getting to be easy. Like, in the beginning, you had to make sure to flush it and make sure if you get stuck you can actually get some out: put a little in, get a little out. And after a while I was getting used to that, and since then, it’s like sliced bread!
Mom: Now that’s it’s healed, he doesn’t have to do all that stuff anymore. It was a little bit complicated in the beginning and he was a little nervous, like, “Be careful! It’s gonna hurt!” But then afterwards, “Oh no, it doesn’t hurt!” And then it was just remembering the steps and stuff, it’s something new, and just making sure we did it together and now it just comes natural. Pretty great.
Alex, age 17, and mother
There was a time when I had the artificial sphincter, which was a bulb that you press and it would open up the urethra. At that point, it stopped working correctly, but they wanted me to press it and then put the catheter through that and urinate through the penis into the toilet that way. That eroded, so then the catheter wouldn’t go all the way in, and I think that’s when they said we’ve got to reroute it and go through the belly button… As a kid, you’re kind of nervous: this isn’t going to change, this is my life now. I wasn’t normal before, but this is kind of space age! You just think it’s kind of DIFFERENT. After a while, that subsides, and it becomes part of your normal routine.
Sam, age 32
Let’s get it over with
I think when you make decisions that big, it’s like, you’re all or nothing. You’ve got to have your mind all behind it, because if you don’t, you’ll kill yourself thinking, “Am I making the right decision?” Especially with me, they were tying the bladder neck – I’m not quite sure how easily that’s reversible, but you know this is something that’s supposed to be for life. So I think at the time my parents and I, I’m sure we wrestled with it at home, but at the time of the surgery we were 100% “Go ahead!” and ready for it. And I knew exactly what was going to happen, I probably was psyched for it – “Let’s get it over with!”
And you know that there’s rehab. The anticipation of a surgery, I always found, was more difficult than the actual rehab. The rehab, it’s kind of like you’ve got a goal: get through it, fight through it, you’re strong enough to fight through it. The anticipation before a surgery, you’re always like, “I hope everything goes right…” because you don’t have that control. The doctor’s got the control.
Sam, age 32
Eventually you get it
It’s different. It’s like something you’ve never done before. You’re sticking basically a straw into your stomach, and at first it probably looks more weird than it feels, because you don’t have much feeling there. Once you do it for a little while, I just remember it becoming common. I don’t know a time frame, but it becomes common after a while.
Maybe the first time you do it, you put it in and you void and you’re like, “All right, it’s done,” and you pull it out. The next time you’re like, “What if you turn a little bit to the right?” Then you find a pocket of urine and you’re like, “Ohh.” That opens your eyes – it’s like, “All right, maybe I’m not getting everything out.” And you just find different ways, knowing your own body, where things are, and what’s comfortable to you, and eventually you get it.
Sam, age 32