A long-term catheter is generally used because of a serious illness or disability. These conditions may make it hard to leave the house, but the catheter itself should not be a reason to be house bound. Indeed, having a catheter may make it easier for some people to go out. Pat, a carer we talked to, said that a catheter had helped her and her husband’s social life by solving his problem of incontinence. She and her husband could now go to the garden centre or the theatre, things they could not have done before. A catheter may also remove the pressure to find a public toilet at very frequent intervals.
Peter manages the 21st Century Catheter Project website and is single. Ethnic background/nationality: White British.
I have no difficulty with a catheter and the leg bag. I have no problems emptying it. But because of my physical state generally, I’m rarely without someone with me. And so I’m totally facilitated if you like all the time. So that I don’t have, I mean I do have problems with it kinking occasionally. But as soon as there’s any sign, we put it straight and it’s not a problem, you know there’s no serious problem like that. So I do go out regularly and, in inverted commas, have a good time. And my friends that are with me are often having to go to the loo more often that I do, and feeling rather jealous about it.
The catheter had given some people the freedom to go to places where the toilets were far away. Frances, for example, said that she could attend outdoor concerts where toilets were few. She could discreetly empty her leg bag wherever she was sitting. Iain, on the other hand, liked to be close to a toilet in spite of having a catheter and a drainage bag. Having a catheter hadn’t stopped him doing anything he’d done before his illness.
Iain is a married IT Officer. He works for the local council. Ethnic background/nationality: White British.
So you’ve been living your life pretty fully, going to work and you go on holidays. Are there any social activities that you don’t do?
You do everything that you are interested in doing?
I do absolutely everything there is to do. I’ve not changed anything. I’m still doing everything I used to do when I was 18 years old that I do now. I’ve never been a person that went out drinking at night time. I’ve never been interested in that. I’ve worked in pubs and clubs when I was younger, that put me off it for life. I think that’s a case of, I don’t see the point of that. I worked in student unions, I saw too many students getting drunk so, you know, that’s not my cup of tea.
No. What sort of things do you enjoy doing?
We love going to the cinema, going to concerts and all these sorts of things. Going on vacations, on holiday to bigger cities close by, just to have a weekend away or something like that. Just go away and do that. Just fun to do.
When you’re going somewhere, if you’ve got bladder issues you’re always very aware of your surroundings. And more or less your shopping experience is mapped around by toilets. So if you go into that shopping centre there, it’s got toilets in A, E & C locations. So you’re kind of going around the area close to those locations. It’s very interesting, you probably live your life around the toilets ‘cos that way you know where they are. And you live your life that way and you have to, unfortunately, to adapt to cope with that.
Some people with a spinal cord injury worried that, while they were out, their catheter bag would fill up and cause problems, such as autonomic dysreflexia. This is a potentially life threatening condition that occurs when the blood pressure in a person with a spinal cord injury above T5-6 becomes excessively high. Vicky felt that, at times, her catheter and leg bag ‘ruled’ her life. If she knew she was going out, she stopped drinking an hour before leaving home, making sure she left with her leg bag empty. A few other people also drank less before going anywhere unfamiliar. Some, however, did not worry about this and described going to work, on holidays and taking part in social life, including sports. Some drove their own car while others went with a family member or professional carer.
Some people said that, if they knew they were going to be away from a toilet for more than two hours, they would make sure they were wearing a leg bag. Ian used a large night bag all the time so he did not have to worry about emptying it while he was out. Others recommended using a larger leg bag when going out, even if they used a smaller one ordinarily. Annie sometimes solved the problem of a full leg bag by emptying it onto the grass or down a drain. Badg sometimes emptied his bag in a dark corner of a car park if he couldn’t find a suitable toilet. Gavin, who has a suprapubic catheter, found it useful to go out with a spare length of tubing so that he could use any toilet.
Annie is married and has 3 adult children. She is a retired nurse. Ethnic background/nationality: White British.
I don’t usually travel any vast distance on my own because I always go with my husband. I do drive a lot and all that sort of thing. And I always have a bottle in the car which I empty my leg bag into. And I never go into any sort of situation where I don’t know whether I’ll be able to get to the loo without making sure that I’ve got an empty leg bag before I start.
And I think you just have to be very brazen sometimes and say, “Look I must go and spend a penny.” And there have been times when I’ve had to go outside and empty my leg bag onto the grass. And actually mostly people might be a bit horrified but mostly they’re very sympathetic and kind. So you just have to be a bit thick skinned sometimes.
But I have to say it’s never really, I’ve never had a major terrible situation really. It’s quite tricky in places, like going to London. You can’t just sort of stop on the side of the road and empty your leg bag into a drain without people looking rather surprised. But you might have to do that, you know, you might just have to grit your teeth and do it.
Age at interview:
Gavin is married with 2 children. Ethnic background/nationality: White British.
Having a spinal injury is a shock and it’s hard to deal with. But not being able to walk or use my hands isn’t as bad, in my opinion, as being competent with your bowel and catheter management. Getting that sorted and being confident in that gives you your freedom to really take advantage of what you can still do.
If you’re constantly worried about either leaking and wetting yourself or having an accident with your bowels, then you’re not able to live your life day to day the way that you should and would have done normally. Because it does overtake you, and that is down to the care that is provided really. And needs to be specific from suitably trained healthcare professionals that have got the time to give you rather than from someone that wants to be in and out of your house in twenty minutes ‘cos it’s not possible for the majority of people, that.
People have talked about leakage and leaking, and being out somewhere. Is there any message or advice you would give in those situations?
I would say just always be practical, always keep wipes or pads and clean things in the car or in your bag if you can. If you’re out and about, make sure you know where the toilets are. If it’s somewhere you go regularly, it shouldn’t really be a problem.
And have a second change of clothes, although in my position if you’re on your own you’d find it very difficult to change anyway. But if you were with someone and you felt comfortable doing it, you could do that.
Personally, I don’t wear bottoms or trousers that are lightly coloured just in case there is like a small, slight leak. It’s not obvious. You could, if you were on your own, get yourself to your car and home without anyone really noticing.
Yeah, just be as practical as you can about it. Try not to worry about it too much. And if it does, just have a plan in place for what you would do.
Badg always planned his car journeys carefully. He carried a spare catheter and bags. He also took an empty bottle in the car in case his leg bag needed emptying. Alok also said that it is important to carry spare bags, especially if the user doesn’t have a bag with a tap at the bottom that can be opened.
Stewart is a retired teacher. He is widowed and has 2 adult sons. Ethnic background/Nationality: White British.
Do you have to change your routine a little bit if you’re going out anywhere?
Oh yes. Yes, and this is another thing that is quite, a bit of concern about this. I can go out, and usually I can go to the shop and back again but no problem. But the trouble is when you go on holiday and you’re on a coach journey, that can be difficult.
So, well I just try to watch what I’m doing and don’t have much of an intake of fluid but…. And it’s the same with going to the cinema, this is one of the places where I’ve noticed it most. Whether it’s the seats or whether it’s the atmosphere, but at the cinema, when it’s getting towards the end of the film, I’m beginning to wonder if I can last out.
Is it that the bag’s full by then, or you’re uncomfortable?
No, when I go to the cinema I don’t use a bag. I have begun to wonder if I ought to, or could do. But, during the day, I prefer just to have the flip-flow that I can relieve at the urinal.
Ann has a busy social life. She attends church and sings in a choir. She also belongs to a book club and walks her dog. Ann sometimes worried that other people would notice her leg bag. She tried different ways of securing it to her leg. She has gradually become more confident about going out and does not restrict how much she drinks.
Ann is a retired doctor. She is widowed and has 3 adult children. Ethnic background / nationality: White British.
Did you start going out quite soon afterwards or was it something that you were wary of doing at first?
Well I was wary, yes. But I live on my own, going out isn’t an option, thank goodness. What you’re anxious about is will the bag show? Will it leak? And what will people think that you’ve got this funny bulge going down your leg or wherever it is. And it is often a bit difficult to keep it under control.
So you have a leg bag?
I have a leg bag. Yes.
Sitting here on the inside of my thigh. And if you’re in trousers you have to think about where the taps going to be, ‘cos you need to be able to get to it. It’s managing it, yes that’s a new skill.
Has it become any easier over time?
I tend to go out with an empty bag. No, I don’t cut down on my drinks on the whole. And I’ve forgotten to say that one of my great helps has been my daughter-in-law who’s a nurse for geriatrics. And she’s been wonderful at giving me advice about, “Why don’t you ask for the sleeve for the leg bag?” You can put on a sort of netting sleeve, and that’s nice some days. And then the straps to hold the bag at the top and the bottom. Those are alright. But all sorts of bits you can learn about ‘how to’, and my daughter-in-law, she’s great.
Age at interview:
Melanie is a journalist. She is married and has one child. Ethnic background/nationality: White British.
What’s it like going out now for expeditions? Going to work? Going to the cinema?
Well I don’t go out to work. I work from home but, if I go out for meals or the cinema, I just empty my leg bag before I go because you have to keep flushing your bladder and keep loads of water in your system for everything, for your bowels as well.
I drink a lot of water. I drink probably, as well as numerous big cups of very weak tea and coffee, I drink at least 2 litres of water a day. So it requires quite a lot of emptying.
Before I go out I always empty the bag and I try and make sure that there’s a disabled toilet somewhere. And it’s okay.
I mean to be honest I no longer have any shame or embarrassment about having a bulge in my trousers where my leg bag is. It’s like, in the scale of things, “So what.” It might have bothered me at one time, but the harsh reality of my condition is such that hey, if anybody else is bothered by it, that’s their problem. I’m not.
I’m quite happy to sort of empty it out of, you know, out of the side of the car if it’s full up, then I just sort of whip it out of the side of the car and empty it. You get a bit sort of blasé, not blasé but hard-line about it. You just think, “Tough. If anyone’s offended, that’s their problem. I’m going to sit here and empty my leg bag if there’s no disabled lavatory.
Badg, who has a spinal injury, thought that able bodied people were unlikely to notice that someone in a wheelchair had a catheter bag. A few other catheter users, though, felt conscious of it and restricted in what they could wear.
Stuart broke his neck in 1997 when he was 47. He worked with an organisation that designed a leg bag emptying device powered by his wheelchair. This gave him more freedom in his everyday life (see ‘Drainage bags’). Others told us how their wheelchair or mobility scooter also made it possible for them to get out and about. However, Peter, who had multiple sclerosis, preferred to stay at home most of the time, as did Gordon, who was 96. Gordon’s daughter lived nearby and did his shopping.
Although some people had carried on with their usual social activities, Kenneth told us that the urethral catheter made some activities difficult. Sharon also found that her suprapubic catheter sometimes affected her activities because it caused pain. Her catheter and bladder problems, which followed a difficult forceps delivery, forced her to give up work.
Kenneth was an engineer and surveyor before he retired. He is married and he has two grown up children. Ethnic background/nationality: White British
How did having a catheter affect your everyday life?
Very difficult to do certain things, like cycling, with a leg going up and down all the time. I tried it, it didn’t really work. Walking, it interferes as well. You can walk a reasonable distance but not a long distance. You couldn’t go out for a walk in the hills or something because it becomes uncomfortable.
Did you have to have special clothing? Special trousers?
It could just fit under an ordinary pair of trousers?
Age at interview:
Sharon is a housewife. She is married and she has two grown up children. Nationality/ethnic background: White British.
How does having a catheter affect your everyday life?
I never know how I’m going to be. This is why I packed up work because some mornings, you know, if I had pain or I can’t bend, it’s just painful even on walking. It just feels like the tip of the catheter’s rubbing the inside of your bladder and it’s really sore. So I stopped work.
You just, sort of, I’ll make arrangements, say I don’t know, go into town shopping with my daughter and I’ll get up and I’ll just think, and I can’t go because I can’t walk around for too long. And then another day I’m just, what I call normal, like everybody else and just go out and walk around, do your shopping whatever. It does affect your life, well it does mine anyway.
Have you had to make, apart from giving up work which is a major thing, have you had to make any other sort of major changes to the way you live?
No, not really.
Does it affect the sort of clothes that you might buy?
And what happens if you wanted to go swimming for example?
Yes, I go swimming with it.
Just wear your bathing costume over it?
Yes it don’t, well once you’re in the water, nobody can see. They might see a bit of a tube but, if I’m on a beach, I will wear like a sarong or something when I’m sat on the beach rather than just lay there with it sort of, you know. But if I’m going to go in the water it doesn’t bother me, I don’t find any problems with that.
Most places open to the public have toilets for people with disabilities, but some are too small for a large wheelchair.
Michelle is a solicitor and Chair of a Social Enterprise company. She is single. Ethnic background/nationality: White British.
Do you find on the whole there are enough disabled toilets around now? Has it got better?
In some ways it’s probably worse for disabled toilets. Particularly if you think about shopping centres and that, and a lot of the public toilets that councils operated are being shut down. But I mean thankfully most department stores, most restaurants, most pubs and places that are open to the public now have disabled facilities. And at least for me it is only the case of, because I’ve got the catheter, emptying the leg bag into a jug and then down the toilet, so it’s not as if I, as I say I physically have to transfer across to a toilet anymore. Cos to be quite honest the amount of disabled toilets that you’d be actually physically able to do that are very few and far between.
Not enough bars and grab rails?
No, absolutely not, no. Or even the size of disabled toilets, I mean some disabled toilets are horrendously small.
People who practise intermittent self catheterisation or those who have bladder problems but don’t use a catheter may need to find a toilet quickly. The Bladder and Bowel Foundation have designed a card called ‘Just Can’t Wait’, which people can carry. The card clearly states that the holder of the card has a medical condition and needs to use the toilet quickly. It does not guarantee access to the toilet but most places that people visit are willing to help. To obtain this card see: Bladder and Bowel Foundation.
Practical tips when going out locally included:
find out where the toilets are when going somewhere new (and if they can take a wheelchair)
use a bigger leg bag when going out, if necessary, because it can hold more urine
take spare catheter supplies with you just in case
Some people we interviewed travelled long distance, even taking long haul flights to holiday destinations (see‘Travelling long distance’).