Some people had been partially paralysed because of a spinal cord injury. Immediately after the accident a catheter had been put in to drain the bladder. Many were at first unaware that this had happened because they lacked feeling below the waist, but later realised that a catheter was unavoidable. Dave found that suddenly being told he was going to have a permanent catheter was ‘slightly disconcerting’ but he knew it was necessary. He could not self catheterise so understood that a suprapubic catheter was the best way to manage his incontinence. Others with spinal cord injury, such as Michelle, also talked about their reactions to having a catheter.
Michelle is a solicitor and Chair of a Social Enterprise company. She is single. Ethnic background/nationality: White British.
Can you remember what you felt, or what you thought when you first realised you had the catheter as well?
No, because I think they probably told me I’d got a catheter but I don’t think I even understood what a catheter was there to do, or where it was inserted or how it was inserted because obviously I had no feeling at all. So I think it would have been a few days.
Thankfully there was a very helpful sister on the ward that they then moved me to, who sat down and explained some of the niceties about having a catheter for, obviously for urine drainage, as well as having to explain how things, around how I was having to have manual bowel evacuations done as well. So it was a sort of double whammy of having to understand you know, because I couldn’t feel. I obviously wasn’t able to control my bladder or my bowels, and therefore having to have somebody to intervene and help that process happen.
That must have been very, very difficult.
Yes. But rather that be there to help than have the other whole side of things if it didn’t.
Age at interview:
Stuart is retired. He is separated and has 3 adult children. Ethnic background/nationality: White British.
Things have improved over the 14 years. I now have partial use of both arms but with very limited feeling and no use of my hands. No feeling or muscle function from the armpit’s down. I was told by the hospital I required an indwelling suprapubic catheter, which meant nothing to me. It was the least of my concerns at the time, and so they just went ahead and did so. I don’t remember, but I assume prior to that, I must have had intermittent indwelling catheters through my penis, but I have no recollection of that period.
At the beginning the catheter, as you say, was not a major issue. My lack of mobility, strength, and just being able to move around and in a wheelchair was paramount. And I don’t really remember, apart from the infections, very much about the catheter because I had no feeling from it, other than the infections which internally made me very sore and very uncomfortable, and made me feel very out of sorts.
Others were given a catheter because of another condition, such as multiple sclerosis, and some spoke very positively about having a catheter. They recognised that a catheter solved problems of retention or incontinence. Emlyn, for example, went into hospital when his enlarged prostate blocked his urine flow. He had been ‘doubling up with pain’ and felt great relief from the catheter. Rob, who had cauda equina syndrome (a serious neurological condition), liked the catheter because it solved his problem of incontinence. It allowed him a fairly normal life. His wife Pat said that the catheter was a ‘small price to pay’. She was just glad that her husband was alive.
What were your first thoughts when you realised that your husband was going to have to have a permanent catheter?
I thought it aged us somewhat and changed our lives but, because he’d been so near death, this was a small price to pay to be honest with you. This, as I’ve said earlier, would be a different thing if you were a young man coming home from Afghanistan and all that. That’s a different ball game, but I think in old age we manage. And he’s still here so that’s the main thing to me.
Many people’s feelings about having a catheter changed over time, they gradually got used to having one. Frances, for example, who had multiple sclerosis, was horrified when she realised at the age of 40 that she would spend the rest of her life with a suprapubic catheter and a drainage bag. But she soon felt that the catheter had improved her life. It made going out and travelling much easier. Alex said the catheter had ‘liberated’ her – she could go out for the day without worrying about needing the toilet and could also take long-haul flights.
Frances is married and has an adult daughter. She is a retired hairdresser. Ethnic background/nationality: White British.
I went and I booked and he got me in fairly quickly and I had it [the operation to have a suprapubic catheter] done. And I had no idea of what it was all about. And I can remember waking up after the op with this tube and this bag attached to my leg and everything. And I was horrified to think that I was going to have to spend the rest of my life with a plastic bag with pee in strapped to my leg. And I thought, “What have I done?” You know, what’s worse? You know what is this, is this it now? Am I going to be like this? And it was awful.
And you were fairly young at this time weren’t you?
Yes, yes. And somebody at the hospital, a nurse at the hospital came up to me and she said, “When you get the chance,” she said, “Look up a company called, can I mention it, called Manfred Sauer, who make the bags.” And the people who work for him are all disabled. They are either wheelchair bound or they’ve got MS. And they’ve designed all these things because they know exactly what they need. And that’s what I did.
I contacted them and eventually managed to get all the contraption that I was advised at the hospital to use. And also I got an agency nurse, you know one of the agencies that do the catheters and everything. And she just dealt in suprapubic catheters and she was brilliant. And I had her for quite a long time. And then she became ill and I had to have the district nurses. But she had trained the district nurses, so I did quite well.
And I ended up not doing any of the things that I was originally advised to do, and I can wear the bag in my trousers, really neatly. I don’t have all these long tubes. I have a direct valve. The bag is sort of cotton backed so it doesn’t affect your skin underneath it. And it’s of a decent size, and I don’t even have to connect to a leg bag at night beside the bed because that made me feel, mentally makes you feel as if you’re, you know, finished almost, you’re not a real person. There’s nothing feminine about it. And I managed to do, eventually, do things my way and it’s worked out, it has worked out well.
Gordon needed a urethral catheter because his enlarged prostate obstructed urine flow. He didn’t like the idea of having a catheter but soon accepted it. Gavin, who had a suprapubic catheter, soon stopped noticing the tube in his abdomen and Alok said he soon accepted that having a catheter ‘was just another way of passing urine.’
Some people only accepted a catheter after changing from one type of catheter to another, such as urethral to suprapubic or vice versa.
Stewart is a retired teacher. He is widowed and has 2 adult sons. Ethnic background/Nationality: White British.
I’ve had a suprapubic, and I didn’t like that. It didn’t seem to be working for me. And I went onto the other one.
The other one. What kind of problems were you having with the suprapubic, because some people have mentioned that they did have problems with it?
Well there again I’m rather vague because I don’t remember, but I have a feeling that it was leaking. And that of course I found is one of the main problems with most of the catheters. No matter how careful you are, there’s a certain amount of leakage, and that can be rather unpleasant and….. But I have to wear pads. I have to wear a pad as well as the catheter.
What’s been the most difficult thing to accept? Having the catheter, knowing that you’ve got it permanently or the other health problems to consider at the same time as the catheter?
Well I think the amount of time that it takes, you know to do things, and it takes longer to go to the toilet. It takes longer to get up in the morning to get dressed. And then on the day of the changeover, I change them, not a catheter but the flip flow and the bag, I change those every week. And the whole business of going through all the routine, so many times a day. And I like to be an organised person. I like to know where my time is going and I rather regret having to spend so much time dealing with catheters. But, as I’ve already said it, you get used to it, just be patient and get used to it.
Some people at first felt very negative about having a catheter, and described how they gradually changed their attitudes. Ann, for example, whose bladder problems followed radiotherapy after a hysterectomy for uterine cancer, said that when her doctors told her that she would need a catheter she felt that they were condemning her to death. However, four months later she was glad to have had the surgery. Peter also had very negative feelings about his urethral catheter at first, particularly when it wasn’t ‘working well’.
Ann is a retired doctor. She is widowed and has 3 adult children. Ethnic background / nationality: White British.
When I was first suggested that I should have a catheter, I thought they were condemning me to death. I couldn’t imagine how I would manage for any sort of a life. So you need to sell a catheter with the thought that it might be a benefit to you, that this might really help to change your life for the better. But I didn’t really get that. But then the first consultant that I saw wasn’t a chap who would make you feel better.
Did the second one make you feel better about it?
Yes. Totally. Kind and confident, yes.
I felt pretty depressed immediately after, because I felt I was tied to this bag and I would never be able to go out again or do anything again. And the district nurse took me, shook me by the shoulders, patted me on the head and said, “No, you’re going to be fine.” So then I felt better.
Age at interview:
Peter manages the 21st Century Catheter Project website and is single. Ethnic background/nationality: White British.
So you had a urethral catheter for how many years?
It’ll be eight now.
Eight now. Yes. And right at the beginning what were your main concerns right at the beginning about it? And how have they changed over time, now that it’s been eight years….
I think the first reaction I had was that it was a permanent intrusion into my body. And that is a psychological step. Rather like when I had to have a tooth out at the front of my mouth for the first time ‘cos I’d broken half of it off on a cricket pitch. And eventually it had to come out and so effectively I had a small false tooth for the first time. And I felt very sort of awkward about that, you know these foreign bodies in your own body. I’d rather have gone around with no tooth as it were, but apparently that was aesthetically not a good idea.
But having said that, I did feel that with the catheter, I mean I did, I broke my tooth at fifteen or some such age. And I did recall that time when the catheter was being, you know I knew it was going to have to done. And I thought, well you know I’ve got two choices' if I don’t have it I’m not going to be on this earth very long, so you know get used to it chum. And I did.
But, as I’ve said two or three times, I would prefer it not to be there. I think that feeling is doubly so when the damn thing isn’t working as well. Well I’m making it work as well as it can but, you know, a lot better could be done.
Hayley felt that there was stigma attached to having a catheter. She explained that people are brought up to regard anything to do with going to the toilet as a taboo subject. But now she accepts having a catheter and said that in some ways it has made life easier and is empowering.
Some people such as Carol felt ambivalent about the catheter. She had a urethral catheter for a few months because of endometriosis.
Carol was a chartered accountant before she retired due to ill health. She is single. Ethnic background/nationality: White British.
You said having a catheter is a bit de-humanising. Can you explain why?
Yes. I think because you lose confidence almost in your body, having this plastic thing hanging down that’s very unattractive really. I didn’t want to date or anything while I had this catheter in for several months, and it just doesn’t make you feel normal I think. Yes, I did really lose confidence for that time.
So tell me about, give me a bit more detail what it’s like to come home with your catheter.
I have to say over the years it has got easier. In fact when I’ve been very ill it’s just a relief to have the catheter because it means that my bladder can rest, and not have the difficulty of filling with urine, and it can heal. So I haven’t found that a worry at all. It’s actually been very straightforward and I’ve felt quite confident about dealing with it.
Other people said that having a catheter affected their self image. Vicky, for example, felt that she couldn’t have an intimate relationship because of her catheter.
Alex is a disability consultant. She is married. Ethnic background/nationality: White British.
You said you were very worried about having it [the catheter] because of body image.
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.
Age at interview:
Melanie is a journalist. She is married and has one child. Ethnic background/nationality: White British.
You touched on self-image. How does having a catheter and a bag affect your self image, on top of all the other problems you might have?
Well it’s pretty rubbish really. You know, I mean having a spinal injury is very desexualising. You stop really feeling like a woman and, when you have a tube coming out of your belly, it’s hard. It’s very hard. It’s been a long process. It’s been nearly three years for me now but it’s still ongoing, that process of learning that I will never be the person that I used to be, the woman that I used to be, that I’ve got my tubing externally rather than internally now.
So it is hard and it’s hard to wear nice clothes when you have to, I said about wearing skinny jeans, I used to love wearing skinny jeans, I’ve got long legs. But it’s not functional anymore so you have to be, some things you have to give up on. But, on a good day, you know if you’ve got a nice pair of suitable trousers on and you’ve got enough make up on and you’ve done your hair, you can pretend you look okay and nobody knows that you’re peeing out of a tube out of your tummy.
Age at interview:
Vicky is single and lives with a full-time carer. She is a trustee of two charities. Ethnic background/nationality: White British.
I’m lucky in that I don’t have a blocked catheter very often, so that’s no great issue. I think only once or twice in nine years I’ve had that problem, so that’s been good. But I think, as much as anything, it’s a self-image problem. Lots of aspects tie up with self-image. When I got paralysed, I decided I wasn’t going to ever have a relationship again, which might seem quite extreme really but the idea of actually having to show somebody a suprapubic site and the catheter and to have any kind of intimate relationship with somebody, I just couldn’t get my head around it.
And nine years later, nothing really has changed on that score. I’m just very much happier not having to confront those kinds of issues really. So that’s something I’ve avoided quite determinedly.
The main thing is, as lovely as it would be for somebody to come up with a better solution, there is always this feeling that it’s a precarious balance of life. If things do work and you aren’t leaking and you don’t get the blockages, okay there’s still the infections but they are manageable, there is always this feeling that you shouldn’t really rock the boat or try anything too new or outrageous because you just don’t want to damage that fragile balance that you’ve got with this crude system that at least means that there’s some dignity.
The idea of having to leave a room of people who could be friends, or might even be strangers, and having to leave a room because you’ve leaked urethrally, is just so horribly humiliating that, even though this system does seem very crude, at least it does work. It’s certainly not perfect in any way but I think there’s always a slight fear of trying anything too new because of exactly that, not wanting to make anything worse really.
Kenneth had a urethral catheter for eight years because he became incontinent after surgery for prostate cancer. He never got used to having that type of catheter. He now has a condom catheter (a Conveen®). Looking back, he said that he hated having the urethral catheter and that it was a ‘blooming nuisance’.
Kenneth was an engineer and surveyor before he retired. He is married and he has two grown up children. Ethnic background/nationality: White British
Can you tell me what it was like to have a catheter? What was it like living with a catheter?
Dreadful. I hated every moment of it. I hated it when it went in. Sometimes the thing, the bulb that held it in would burst, so it would come out. It could come out when you were in the bed. It could come out when you were out walking. And of course having it replaced, if you had somebody that was good at it, it was fine, but if you had somebody that wasn’t good at it, that again was another horrible time. I didn’t like it at all.
I didn’t realise it could, the little balloon could burst and it could come out.
Oh, yes, yes, unfortunately that happened to me, I think I can remember three times. Once when I was out and twice when I was in bed.
That must have been awful.
It’s quite embarrassing, especially when you’re out.
Were you embarrassed to start with, when you had a catheter?
Oh, yes, oh, absolutely, a bit embarrassed about the whole thing. I certainly wouldn’t have spoken about it to anybody at first. I mean that was, I mean it’s not manly, is it?
Did you feel that?
Yes. Then, I now realise of course, it’s one of those things and you just sort of put up with it and make the best of it. And, well, what else can you do?
So at first you didn’t talk about it to friends?
No, oh, no.
Did any of them find out? And how did they react if they did?
I suppose some of them found out in the end. But I never actually went to somebody and said, “Hey, I wear a catheter.” It’s just something you don’t do. I mean if you met somebody who was in a similar circumstance, you might. But the only place you’d meet those would be in the hospital. And, well, you just didn’t.
Did you ever look for other people to talk about it to?
Jack, who’d had a catheter since 2011, felt unsure about it. He had an enlarged prostate and didn’t know whether to carry on living with the catheter or have surgery to his prostate. Surgery would mean he could be catheter free but came with its own risks.
Jack is a retired county court clerk and is single. Ethnic background / nationality: White British.
Unfortunately, I’ve had problems since [having the catheter] in that I’ve had to have it changed often. It has become blocked, so I’ve had to ring for a nurse to come and change the catheter. And that has happened, was happening quite frequently. It happened at Christmas time, two weeks later. And I’ve gone now for four weeks bar a day, had it changed on Sunday, that was a day short of four weeks. Now the lady who’s keeping a check on this, she’ll ring me again this week. She might ring me today. She reckoned four weeks has been a reasonable time, but I don’t think it is a reasonable time.
So I’m undecided now whether or not to have the operation. You see I have difficulties in that, sometimes, if I’m not careful I don’t plug the night bag in right. Then of course it leaks then and there have even been night bags that have been faulty.
I had one that was not screwed in properly and that leaked. I had one that had not been closed properly and that leaked. Then I’ve had a connection from a day bag, the connection had come out. I’ve had to put it in myself.
Yes. Has that always been while you’ve been at home?
Yes. I’ve been at home since, about the end of July, beginning of August. And so, at the moment, I’m undecided what to do because of the worry about it.
Several other people we interviewed said they felt embarrassed about having leaks, and sometimes people were concerned about other people’s reactions to their catheter and leg bag. Carol, for example, said that she sometimes worried that the urine in the bag might smell. Badg, who was in a wheelchair, thought it unlikely that other people would notice a bulge on his leg because of the height of the wheelchair. He said that able bodied people have ‘enough trouble looking down as far as your head if you are in a wheelchair, and they won’t have a clue’. However, Sara, who was also in a wheelchair, said that others did sometimes ask about the lump on her leg that appeared to be growing, but when she explained what it was they felt embarrassed and didn’t ask any more questions.
Most people said that they didn’t go round telling others about their catheter. They said that if others noticed the catheter or bag they didn’t usually make any adverse comments. Michelle recalled a ‘funny incident’ when a friend had emptied her bag for her in front of her children. Curious, her friend’s young children discretely pulled up Michelle’s trouser leg to find out where the liquid was coming from. Ann said that she thinks it is probably best to talk about catheters so that other people understand the problem, and Frances thought it was important to keep a sense of humour.
Frances is married and has an adult daughter. She is a retired hairdresser. Ethnic background/nationality: White British.
Have you ever been surprised by anyone else’s reactions if anything’s happened while you’re out and about?
Well most of my close friends know that I’ve got it done because they all knew I was going, they all knew that I had trouble before, because we used to make jokes about when I was padded up. They used to sort of say, “Here comes squelch,” ‘cos that’s, I used to say, “Oh I won’t sit down.”
I mean you’ve got to make fun, you’ve got to make fun of yourself. And I make, it’s like when I’m on my scooter and that, you’ve got to laugh at yourself. You really have. And I mean I’ve had accidents on my scooter. I’ve ended up in A&E, fallen off and that. I’ve done awful things. My daughter says I’m the only disabled Mum who does extreme sports.
But you do have to laugh about yourself and I don’t get offended by disabled jokes. You know, when ‘Little Britain’ first started on the television and they’ve got that chap in the wheelchair. And people used to say, “Oh how,” you know that’s offensive to disabled, it’s not. We can all laugh; we can all laugh at it. And I’ve copied them as well and I’ve been, when my friends have taken me out somewhere, we go to the Horse of the Year show or something. And they’ve taken me in the wheelchair. And I’ve done it to them; I’ve pointed and said, “I want that one!” And you have to do it, you know. And it’s like the one on ‘Benidorm’ [TV programme] and the scooter, and she’s all burnt up isn’t she? But I laugh at it. I think, you know you’ve got to laugh with it.