Alex

Age at interview: 51

Brief Outline: Alex has multiple sclerosis (MS), which has caused urinary incontinence. She has a suprapubic catheter, which she says is liberating and has improved her life. She prevents infections by drinking a great deal of water and having a daily low dose of antibiotics.

Background: Alex is a disability consultant. She is married. Ethnic background/nationality: White British.

More about me...

In 1986 (when aged 25), Alex was diagnosed with multiple sclerosis (MS). At first she had minor symptoms, but after about 10 years she experienced urinary incontinence. She managed this by wearing pads, but found that she was limiting the fluids that she drank and that she worried about going out. She also found that it was tiring and difficult changing her pads. Her continence nurse and her urologist suggested that she should consider having a suprapubic catheter. At first Alex was not keen on the idea because she feared that a catheter would have a negative effect on her body image, and that with a catheter her husband might not find her sexually attractive. 

 

Alex tried self catheterisation, but found this too difficult because of the spasticity in her legs. Eventually she decided she would have a suprapubic catheter. No one discussed where the catheter was going to be placed so Alex assumed that there was only one suitable place for it. She had the operation under sedation and was only in hospital as a day patient. When she woke up she found that the catheter had been inserted very low down, near to the pubic bone, and she was worried that the position of the catheter might make sex difficult. However, when Alex and her husband had sex again she found that all was well and that they could both still enjoy the experience. Alex discovered that her consultant urologist had assumed that she would want the catheter placed as low as possible so that she could still wear a bikini. The consultant offered to do the operation again and move the position of the catheter. Five years after her initial operation Alex decided to have her catheter re-positioned. This time she spent one night in hospital. The catheter now lies a bit higher up and to one side of her abdomen.  Alex believes that before a woman has a suprapubic catheter, the urologist should discuss the siting of the catheter and place it where it best suits that particular woman and her life-style.

 

Alex was concerned because after sex she saw a little blood in her urine. Doctors could not explain this, but after six years one urologist suggested that she should shut her catheter valve about 15 minutes before sex, so that there was still some urine in her bladder during sex. The urologist thought that if the bladder was completely empty during sex the end of the catheter might rub on the wall of the bladder and irritate it, thus causing the bleeding. Alex did as the urologist suggested and the bleeding was reduced.

 

At first Alex had quite a few urine infections. Her urology Professor suggested she take a daily low dose of antibiotics to prevent urine infections which she has now been taking for 8 years and works very well. She also drinks copious quantities of water. Her continence nurse suggested that she change from a latex catheter to a silicone catheter, which also suited Alex because the latex catheter was giving her blisters on her leg. Alex has her catheter changed every five weeks. If she leaves it longer it tends to block.

 

Alex is very glad that she has a suprapubic catheter. She says that it is liberating and has changed her life for the better. 

 

 

Alex would like a discreet catheter and a range of bags to choose from for different occasions....

Have you got any suggestions for catheter designs as well? 

 

Well only off the top of my head, small things like, don’t make them bright orange, you know. I know I’ve got a catheter there. I’d rather it kind of blends in with my skin and doesn’t glare out, you know, I’ve got a catheter. 

 

I would like a range of bags to be made so that, for example, if you’re going out of an evening and you don’t need to drink loads of liquids, you could have a smaller bag so that it would be more discreet and you can wear skirts. 

 

Also, I would quite like a bag for, and you could design a bag for having sex so that it’s smaller, lighter more discrete. 

 

Also, I am the sort of woman that likes to wear quite tight clothing so I’d like it to be thought about, having a bag that can accommodate that. 

 

I found lots of work around. One of them is, I wear hold up stockings, and what I do is I wear one, let’s say a black pair of hold up stockings then I put the strap, my thigh strap to hold the tube in place then the leg strap to hold the bag in place. Then I put another pair of hold up stockings, dark opaque on top. Cut off the foot of my left foot tight because then you can just roll up the outer tight just a bit, reveal the valve, empty the bag. But you don’t see that you’re wearing a bag because it’s concealed by the second dark opaque hold up stocking on top. 

 

Good idea, a wonderful message to other people. 

 

And then you can wear skirts but you have to wear boots so that your bag can go into a boot. But so it’s possible, you know, if you think of ways, it is possible to wear a dress, wear a skirt, be sexy and not have to show your catheter in an embarrassing way. 

 

Alex was shocked when she saw the catheter because it was so close to her vagina. She wondered if...

I went for the operation which was done under sedation, very simple, for me anyway, it was, I just fell asleep and woke up and it was all done and very neatly. But when I woke up and I looked at where it was put, I was really alarmed because it was very low down on my kind of pubic bone, really near my vagina and really near my clitoris.

 

And I thought, “Oh my God”, and I didn’t say this to anyone, not my husband, nobody. But I thought, “Oh my God, am I going to be able to have sex again, will it get in the way?” and then I thought, “Am I even going to be able to have an orgasm again?” Because I had like this plastic tube right near a very sensitive place but I didn’t say anything about this.

 

It took me two years to decide to have it re-sited because I hate hospitals, but I did have it done and it’s great because now it’s much more out of the way for sex so it isn’t quite as annoying as it was before.

 

It’s a little bit higher up is it now?

 

Yes, it’s higher up.

 

So almost at the level of the belly button?

 

No, it’s to one side, because I wanted it slightly to one side because the good thing this time was the siting was done in consultation with me and my consultant and that is brilliant. Because then you can both have a discussion about, well I said I’d like it here and then he could say well actually here might not be so good because of this, then me and my husband could decide again where we wanted it.

 

That’s good.

 

So that was really good but that took quite a few

 

Six years.

 

Yes, of talking, and the fact I would say to anybody who is going to have a suprapubic catheter, ask about siting. Decide where you would like it and then have a conversation about that because it’s really important to do that. 

Alex restricted how much she drank and found it tiring and difficult changing pads. She resisted...

I’ve got MS, Multiple Sclerosis. When I first became ill, I had very minor symptoms and it didn’t really affect my life much. Then after about ten years, I would say, I began to have quite major problems, disability wise, that did affect my life. One of which was I became incontinent, with urinary incontinence. So I started wearing continence pads but it got to the stage where, because with my MS, it was very tiring and difficult to change the pads. 

 

So I found myself limiting the amount of fluid that I drunk, and actually getting to the stage where I didn’t want to go out much because I was worried about whether I would need a loo and even if I needed a loo it would be too tiring and difficult to change my pads. So I really felt that my life was being severely limited. Plus my health was at risk because I just was not drinking the amount of fluids that I needed to. 

 

So I talked to my continence nurse who was great, and she suggested the idea of maybe a suprapubic catheter. I completely dismissed this to begin with. Then I went to my urologist who was really great and he recommended a suprapubic catheter. And he was great he, he said ‘Obviously anything is your decision but I think this might really help you.’ Again I really didn’t like the idea. My continence nurse showed me a suprapubic catheter and I just, I really didn’t like the idea. I felt like I’d be like some awful version of the bionic woman with this kind of plastic tube coming out of me. And for me my body image is really important, so I didn’t like the idea at all. My urologist said to me he thought it could be really liberating but I was still resistant.

 

I want to make the point that, for me, having a suprapubic catheter has totally liberated me, really changed my life. I’ve been able to go abroad on long haul flights. I can go out for the whole day visiting people or doing work shops or training or giving public speeches without having to worry about, “Do I need the loo, I can’t drink this.” I’m able to drink as much water as I like, and it really helps me.

 

Alex explained that her body image was affected by a combination of the catheter, her changing...

You said you were very worried about having it [the catheter] because of body image.

 

Yes.

 

Did it affect your body image as badly as you thought it was going to?

 

I would say that it wasn’t just the catheter that affected my body image. It was the combination of my body’s slightly changing shape because of my disability, being in a wheelchair, my spasticity, my posture, everything, and losing muscle tightness in my body, so having a bit more of a flabby tummy. And that all combined with the catheter really affected my body image and made me question, “What is attractive, am I still attractive?”

 

Was the catheter the last straw do you think, or did it make a big difference, the catheter, from the other disabilities?

 

No I wouldn’t say the catheter was the last straw but it was a building block in getting there. Funnily enough I think the final straw was how much my body shape changed from being in the wheelchair with my increasing spasticity, because I used to be able to sit up quite upright in the wheelchair. So I felt like, and I still felt I had quite a bit of muscle tone in my stomach area. But then when that also started to go and I became a bit kind of banana shaped, just that on top of my catheter, on top of getting a bit older, on just with everything, I really thought, you know, well it made me question myself as a woman, my attractiveness, my attractiveness to my husband but also to other people. You know I like the idea that people might look at me and think, “Oh she’s attractive”, you know, and I felt that that just wasn’t happening. I felt I was invisible I’d lost confidence in my own body and myself as a sexual woman.

 

Alex has taken nitrofurantoin daily for 7 years. She gets an infection every time she stops...

First nine months and no infections, then I started to get infections. So eventually my urologist put me on a prophylactic dose of antibiotics, low dose, and I’ve been on those for the last seven years, every day and it’s brilliant. Because when I have come off it, when he’s said to me ‘Oh let’s see what happens, how you’ll get on now without it,’ I get an infection. I get pain. As soon as I go on this prophylactic dose, it goes away and I am fine.

 

What’s the antibiotic called?

 

It’s called nitrofurantoin; I take 100 mg twice a day. Now something very interesting that I discovered from another consultant was, because when I first got these infections my urologist put me on various different antibiotics at levels of 500 milligrams a day and I got bowel incontinence, which was awful, because I really couldn’t go out of the house. And I thought, “Oh my God”, you know, “What’s going to happen, why is this happening to me?” And I thought I’ll never be able to take antibiotics blah blah blah. 

 

Anyway I went to a completely different consultant about food allergies, something very different, and I just happened to say to him that I was having this bowel incontinence. He asked about my antibiotics, and he said it’s totally dose specific because I was taking nitofurantoin but at a higher dose and that was giving me bowel incontinence. But as soon as I switched to the lower dose of nitrofurantoin, fine, no problems.

 

That’s good and no other side effects?

 

Well not that I’ve noticed at all.

 

Alex’s suprapubic catheter change was quite easy. The continence nurse changed it and her husband...

How often do you have to have the catheter changed now?

 

For me, I have it changed every five weeks because I found with my body, about the time of five weeks, it would start to start blocking. So I found that if I change it every five weeks, that’s fine, I don’t get that problem.

 

And is it changed here at home?

 

Yes, the continence nurse comes and changes it. My husband also has changed it several times when it has blocked. It’s actually quite easy to do. It’s not painful and it just takes a bit of preparation. 

 

I have a kit that I’ve put together. My emergency catheter change bag, which contains a catheter, gauze swabs, Micropore tape, Steripod with sterile waters that clean me, a spare empty syringe in case the brand of catheter I’m using doesn’t have its own syringe to take the water out of the balloon, a spare bag and flip flow valve. 

 

I can’t remember exactly everything but, for me, it really works to have an emergency bag ready. I keep one in the car and one in my bathroom. So I know that if it blocks, I’ve got everything ready there to be able to do it. 

 

And, as I said, my husband’s done it. He doesn’t find it terribly onerous at all or difficult. Obviously he’d rather he didn’t have to do it. I’d rather he didn’t have to do it but, actually, it can be done pretty easily and painlessly.

 

Alex was glad her husband was there to support her when she felt that some health professionals...

And communication with the staff and all that sort of side of it, was that good?

 

I have my own, no I shouldn’t say my own, because I have hygiene standards that I feel are actually just the hygiene standards that any health professional should adhere to. And many health professionals do but some do not. So there were instances where people were coming to deal with me, hands on, and without washing their hands. And so I had to say, “I’m sorry you can’t touch me until you’ve gelled your hands or washed your hands”. So I did have some of those issues.

 

That must be quite difficult to be strong enough when you’re in hospital as a patient to tell the doctors to go and wash their hands, it must be quite, you must be quite strong.

 

It’s very difficult and one of the things that slightly helped, well not slightly helped, that did help, was my husband was there to support me, that was really important. And I mean my husband throughout the whole thing has been extremely supportive and it really, really helps. As strong as I can be, sometimes, and as vocal as I can be sometimes, and with my level of knowledge disability wise because I’ve been involved in the disability world for over ten years, it is still hard for me when it comes to me, my own body, other people in authority who are taking care of me, have the control i.e. doctors, nurses, it’s still really hard to stand up for what you want. 

 

So I’d say to people get as much help and support with you as you can and remember it is your body and you need to look after it. And sometimes some health professionals are not good at that and are not doing the right hygiene procedures.

 

Alex’s husband was very supportive when she was in hospital, and also when she returned home. On...

That must be quite difficult to be strong enough when you’re in hospital as a patient to tell the doctors to go and wash their hands, you must be quite strong.

 

It’s very difficult and one of the things that slightly helped, well not slightly helped, that did help, was my husband was there to support me. That was really important, and my husband throughout the whole thing has been extremely supportive and it really, really helps. 

 

As strong as I can be, sometimes, and as vocal as I can be sometimes, and with my level of knowledge disability wise because I’ve been involved in the disability world for over ten years, it is still hard for me when it comes to me, my own body, other people in authority who are taking care of me, have the control i.e. doctors, nurses, it’s still really hard to stand up for what you want. 

 

So I’d say to people get as much help and support with you as you can and remember it is your body and you need to look after it and sometimes some health professionals are not good at that and are not doing the right hygiene procedures.

 

How often do you have to have the catheter changed now?

 

For me I have it changed every five weeks because I find with my body, about the time of five weeks it would start to start blocking. So I found that if I change it every five weeks that’s fine, I don’t get that problem.

 

Is it changed here at home?

 

Yes, the continence nurse comes and changes it. My husband also has changed it several times when it has blocked. It’s actually quite easy to do. It’s not painful and it just takes a bit of preparation.

 

Alex likes her suprapubic catheter, partly because it has made it much easier to travel, to take...

I want to make the point that for me having a suprapubic catheter has totally liberated me, really changed my life. I’ve been able to go abroad on long haul flights, I can go out for the whole day visiting people or doing work shops or training or giving public speeches without having to worry about, “Do I need the loo, I can’t drink this”. I’m able to drink as much water as I like and it really helps me. 

 

If I do not drink at least a litre a day and I drink every day a litre and a half, if I don’t do that I really physically notice it. My bladder hurts. I feel like I’m about to get an infection, so drinking water is so, so important I think, for good bladder health for anybody, suprapubic catheter or not, but it’s liberated my life and I’m so pleased I’ve had it done.

 

Alex describes her use of a male travel urinal on car journeys, planes and trains to empty her...

One of the things I found really useful is having the right tools with you, and one of the things I found really useful is something called a Uribag, but the male version. Because the male version has a lid that you can close and it seals it so that the urine that you empty into the bag doesn’t come out.

 

So what you can do is, when you’re in a car and your catheter bag is full and you want to empty it, you can sitting in the car, you can get a personal assistant or your partner to use the Uribag which is plastic, about a diameter of a 50 pence piece with a lid and a rubber bag at the bottom which folds up into the tube when you’re not using it. Then you pull it down, then you open the lid put it over the valve in your leg bag, open the valve, all the urine drains into that. You then close the lid, after closing the valve on your bag, then you close the lid on your Uribag and if you can’t get to a gutter or a loo to empty the bag then you can keep it sitting on the floor of your car and the lid will stop the urine from coming out. And it’s brilliant.

 

We’ve used it on aeroplanes, trains, in cars. It means also you don’t have to go into a toilet; you just go into a room that has a sink.

 

Why don’t they make them for women?

 

Well they do but the women’s version is just like a mini urinal that you put over your vagina. You pee into that but then there’s no way of closing it and sealing it or, I don’t know why, but it’s not designed to be used with your catheter bag.

 

No.

 

That’s why I’ve adapted it, not adapting it because I don’t do anything physical to the actual apparatus.

 

So it’s a bit like a urine bottle that was designed for a man to use when he’s out?

 

Exactly.

 

But you use it with a catheter.

 

Yes and I’m adapting it to use, for using with a catheter.

 

Brilliant.

 

And it makes travelling, going to visit friends that don’t have a loo on the ground floor, everything. And, as I said, you can do it in your car. 

When Alex first had a suprapubic catheter it was placed very low down. This worried her because...

Then I decided, yes, I would go for it, I would have a suprapubic catheter, and I assumed, because nobody actually talked to me about the siting of the catheter, I assumed they hadn’t discussed it with me because there was only one place it could go. I really had very little knowledge then about catheters and your bladder and where they can be placed.

 

Where did you think it was going to go?

 

Well I just thought it had to go wherever they put it. And I thought the doctors were best placed to decide where it could go and there was only one place so they’d put it wherever the one place was. So I thought I didn’t need, that I couldn’t have a conversation with them and especially since nobody brought it up. Not my consultant and not the continence nurse and, although she was very good, and I’d had quite a few discussions with her about my body image, weirdly enough the whole siting of it never came up. 

 

So I went for the operation which was done under sedation, very simple, for me anyway, it was. I just fell asleep and woke up and it was all done and very neatly. But when I woke up and I looked at where it was put, I was really alarmed because it was very low down on my kind of pubic bone, really near my vagina and really near my clitoris. 

 

And I thought, “Oh my God”, and I didn’t say this to anyone, not my husband, nobody. But I thought, “Oh my God, am I going to be able to have sex again, will it get in the way?” And then I thought, “Am I even going to be able to have an orgasm again?” Because I had like this plastic tube right near a very sensitive place but I didn’t say anything about this. 

 

It did take me, and I only realised afterwards, it took me about three months to recover my full kind of health and energy from having the procedure. But I think that, it felt like it was quite an undertaking for my body, but that’s just my body. 

 

And interestingly enough I have had it re-sited and the operation that I had when I had it re-sited, that took me a couple of days to recover my full energy and everything. 

 

After Alex had sex, she found blood in her urine. Her consultant suggested she close her flip...

The first time I had sex was actually three months after the operation because I just, I didn’t feel like sex before. Everything felt a bit too tender, plus I was just really worried about what would happen. 

 

We had sex when we were away on a holiday and I could have sex, we did have sex, I could still have an orgasm. That was fantastic. That was good. One thing that did happen was the first time and quite a few subsequent times, each time I would have sex I would bleed into my catheter bag. 

 

So the first time that happened I completely freaked out. We were abroad. I thought, “Oh my God, what if something serious has happened.” Luckily my husband, very calm, he said, “Look, just drink lots of water and let’s see what it’s like in the morning.” And it was fine. It was absolutely fine. 

 

And I have, in the intervening years, asked my consultant and my urologist, my continence nurse and several other health professionals in that area why I bleed sometimes when I have penetrative sex and what I can do about it. And every single one, up to two years ago, so that was six years of people saying, “I’ve no idea, I’ve never heard of that happening with anybody else.” And I can guarantee I will not be the only one that this has happened to but I think the problem is nobody ever discusses sex with their health professionals. So people could have been having this, women having this problem but just not wanting to talk about it with anybody. 

 

After six years I asked a new young urologist about this problem with the bleeding and she said to me, because I wear a valve, I use a flip flow valve on my catheter which I open and close at various times, it’s mostly open but I do close it for at least ten minutes twice a day because it’s better for your bladder health. 

 

Anyway she said to me, “Try closing your valve just before, you know like five minutes before you’re going to have sex and that might help because what might be happening is because your valve is open, your bladder is pretty empty. So that when you have sex, the end of the catheter might be kind of irritating and rubbing in your bladder. So that might cause the bleeding.”

 

She didn’t know a 100% but she said, “Try it”. So I did try it and that has helped. It doesn’t, I don’t never get it but I get it very rarely now. And also I have to say that the bleeding didn’t hurt. It didn’t interfere with my enjoyment of sex at all. It basically after ten minutes or so it stops and the urine is completely clear.