So I had my Mitrofanoff created when I was 10. They used my appendix and a bit of my bowel. They blocked my urethra off down below, used my appendix. They took my bowel to make a channel and attached that to the top of my bladder, and I now have a stoma there, and that is where I catheterise through. And so since I had that operation I’ve been continent which is amazing because it was; I’ve got lots wrong with me but of all things if I, the thing that scares me most is being incontinent again.

What’s been the best thing about having a Mitrofanoff as opposed to urethral catheterisation?

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 weed 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.

What’s important to you as far as, for example, a nurse is concerned, who is dealing with you?

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 everyones been really understanding. Theres 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.

Did you want to show us your 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.

It is.

That’s very neat isn’t it?

That’s it.

Yeah lovely. Thank you.

Alright.

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.

I get the catheter out and I push it through the stoma, through the hole, and I can feel it hit the bottom of my bladder and the wee drains into the toilet. I wait till its finished draining and then I gradually pull it out because for some reason you get little pockets where it’s still not drained. So I just wait till it’s drained, stop a bit, go a bit more, stop a bit, go a bit more, and take the catheter fully out. Clean it and put it back in a food bag or one of these [bags] and wash my hands and I’m done.

And a new dressing on it?

No, I just use one dressing a day.

Oh okay.

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.

Perhaps before we go on any further, would you explain to somebody who doesn’t know, what a Mitrofanoff is exactly?

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 mines 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.