Living with a urinary catheter
Using a Mitrofanoff for intermittent self catheterisation
People who are incontinent or who cannot empty their bladder through their urethra, and who have poor use of their hands (manual dexterity), may have an indwelling catheter or rely on professional carers for bladder management. Sometimes, however, it may be possible for them to practice intermittent self catheterisation via a Mitrofanoff. This procedure can help people to remain independent.
The Mitrofanoff procedure creates a channel that acts in the same way as a urethra. It is made from the appendix, bowel, or both. It’s a complex operation. The surgeon separates the appendix from its attachment to the bowel, while maintaining its blood supply, then creates an opening at its blind end and washes it. One end is connected by surgical sutures to the bladder, and the other is connected to the skin to form a stoma. The channel runs from the bladder to an exit either through the umbilicus (belly button) or beside it. Intermittent self catheterisation through the Mitrofonoff is needed to empty the bladder.
A consultant explains what a Mitrofanoff is.
Rachael was born without a bladder, and with a malfunctioning kidney. Doctors created a bladder from part of her bowel. When she was six years old she was taught to empty her bladder via her urethra. Despite intermittent self catheterisation she was often incontinent. When Rachael was aged 10 doctors decided to create a Mitrofanoff, using her appendix and her bowel.
Rachel has had a Mitrofanoff for nearly 23 years. She explains what it is.
It’s basically a channel which is commonly now done through the belly button so you can’t actually see it, it’s a stoma. And basically it’s a channel from the bladder to the skin so you can catheterise when you need to go. Some people do have it [the catheter] in long term but it [the Mitrofanoff] is mainly for intermittent self catheterisation which is what I’ve got it for. And I’ve had that nearly 23 years.
How often do you pass a catheter?
You’re meant to go every three to four hours. It depends on your bladder and if you’ve got an augmented bladder, like it’s made out of not just bladder, like mine’s made out of my bowel, you do it, it does depend on how much [urine] you can hold. So I quite often go a lot more than that, but it averages every three to four hours. Some people can go through the night without going. Some people put a bag on so they don’t have to worry about going. I just, if I need to go, I go.
Do you open a valve?
I don’t even have a valve. I literally just get my catheter, get it out, put the green end in through the stoma and the water, the wee just pours out, it’s really, really, simple.
[She shows us the catheter on camera]
Mm. Really good.
And once it’s stopped draining you sometimes have to move it around a bit to get to the bottom of your bladder or whatever, once it’s stopped draining you take it out and you’re done. It’s that simple.
Lifting her sweater Rachel displays her stoma.
I can do.
Only if you want to.
Yeah I’m happy to.
Do I need to disconnect you [from the microphone]?
No I can stand up. I apologise for my stomach, I’ll put that there. [Shows the stoma]
Oh it’s very neat.
That’s very neat isn’t it?
Yeah lovely. Thank you.
Thanks very much. It’s very reassuring to people.
Yes it really doesn’t [show], and these days the Mitrofanoff is done through the belly button when possible, so you can’t, you can see even less than that.
Rachel explains exactly how she drains urine from her bladder through her Mitrofanoff.
And a new dressing on it?
No, I just use one dressing a day.
Unless it’s really mucousy, if I’ve got a really bad infection, but I just use one dressing a day. I just use Melanin with micropore tape and just stick a dressing over it.
Rachael says that having a Mitrofanoff has changed her life for the better. She says that having a Mitrofanoff is better than practicing intermittent self catheterisation via her urethra.
Since Rachel had the Mitrofanoff operation she has been continent which she says is “amazing”.
Rachel explains why she thinks that self catheterisation via a Mitrofanoff is better than self catheterisation via her urethra.
No leaking. I’ve had the occasional, I’ve had two occasions where it’s been revised because it was leaking a bit but it, nothing compared to when I was incontinent down below. It’s just, it’s so easy. I can’t, I can’t sort of say how good it is, it’s just changed my life completely.
What about your feelings about yourself as a result of having a catheter?
I think I would have a lot more negative feelings if I was still doing it urethrally. Because I don’t know any different, I’ve never wee’d normally, I don’t know what it’s like to sit and wee, which…. I don’t mind not knowing, I’d be interested to know what it feels like but I don’t know any different from catheterising, and it’s, I feel like it’s part of me really. I don’t feel like, it’s never sort of something that’s got on my nerves. I get a bit annoyed if it’s painful or if I have a bad infection.
Can you say why you think if you had to catheterise urethrally you’d feel worse?
Just because, I suppose feminine, girly wise it’s nearer your girly bits. And it’s just a lot more personal. I don’t, I don’t have to reveal anything doing it like that. I suppose, I mean I coped with it but I didn’t massively enjoy catheterising urethrally when I was little.
Rachael has found support from family, friends and via a group of other people who have a Mitrofanoff on Facebook. She has also found help from Mitrofanoff Support website.
Rachel has had excellent care from health professionals over the years but thinks it is important that doctors and nurses admit to uncertainty because they do not always know what to do when she asks for help.
Rachel thinks that it is important that health professionals listen to the patient. She says that some health care workers are more willing to learn than others.
Well unless they’re sort of specialised they don’t always know what to do or how to deal with me. But I just, as long as they’re willing to listen and understand and try, then I’m happy. You know I’m very aware that I might sound like I’m telling them what to do, which I’m not, but I know what works for me and what doesn’t and I’m not a normal [person]; health wise I’m not a normal, I’ve got thirteen things wrong with me. And a lot of them mixed together symptom wise and side effect wise and everything, so what works normally for a lot of people doesn’t, just doesn’t work for me. So I’m very aware that I don’t want to tell them what to do but I do need to sort of reassure them that although what they’re trying to do is helpful it might not work for me.
So for you it’s really important that health professionals listen to you?
Yes listen, just listen, without thinking I’m telling them what to do. ‘Cos I do realise they might think “I’ve been at university for years,” or whatever, and that I’m trying to tell them what to do. But so far everyone’s been really understanding. There’s been a couple of occasions, for example, I have to have bladder washouts and before I met my husband I had a district nurse do it and they’d never known anything like a Mitrofanoff before. And when they’ve done bladder washouts previously they’ve used these little things, about that big [indicates about 2 inches], but I have to use these [shows a large syringe] with like saline, sterile type water. And when they put the water in we have to draw it back rather than just putting the water in, which I don’t believe is done generally, so they’re a bit confused about why and how much I put in obviously ‘cos I do four or five syringes if I can bear the pain if it’s hurting that day. But it’s the only way to get the mucous out if the mucous is particularly bad or if I get a blockage.
So again you’re teaching the district nurses what to do?
Yeah, yeah. And some of them are a bit more willing to learn than others. But I think that’s just, it’s not, I don’t mean that I’m blinding them with science but I think they’re just, just not used to it and it’s a bit of a, not a shock but they don’t know how to deal with it.
We interviewed another woman, Hayley, who had a suprapubic catheter but who wanted a Mitrofanoff. She thought that intermittent self catheterisation via a Mitrofanoff would reduce the number of urine infections that she had each year. Hayley has not yet managed to persuade her doctor that she should have a Mitrofanoff.
Hayley said she would have liked to have had a Mitrofanoff and explains why.
If you look on line at the Mitrofanoff, which is a completely different procedure, but it makes a hole from your bladder to your tummy and you insert a catheter when you need to wee…I would love, that was my first choice. That, but it still is my first choice.
Last reviewed October 2018.
Last updated June 2015.