A-Z

Living with a urinary catheter

Advantages of an indwelling catheter

Urinary catheterisation is a medical procedure used to drain and collect urine from the bladder. A urinary catheter might be used long term:
  • to treat urinary retention (inability to empty the bladder when needed)
  • when there is obstruction in the urinary tract (such as a bladder stone or, in men, a swollen prostate gland) and the obstruction can’t be removed immediately
  • to treat urinary incontinence(leaking urine or being unable to control urination) if all other types of treatment have failed
  • to remove urine from the bladder if nerve damage interferes with bladder control (this is called neuropathic bladder)
  • in bed-bound people too weak to go to the toilet normally

Here, men and women who have been living with a urinary catheter for varying lengths of time talk about the advantages of having a long-term urinary catheter.
Peter Y, who’d had a spinal cord injury, used a condom catheter for over 30 years before using a urethral catheter. He said the catheter had saved his life and given him energy again after many infections and ill-health. Iain, who has multiple sclerosis (MS), had had no problems at all living with a suprapubic catheter. It dealt with the urgent need to go to the toilet, an important benefit also noted by others.
 

Before having a urethral catheter, Peter Y was showing signs of anaemia, feeling lethargic and...

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Age at interview: 65
Sex: Male
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It’s fair to say it [urethral catheter] did save my life because I was, I now know that I was going to die if I’d continued in the vein I was in because, one, I was showing signs of anaemia, which is a side effect I think of the back pressure on the kidneys. And I’d taken the odd iron tablet for that. 
 
I’d also, I know from the blood tests that were done then, and then fortunately over the next year the blood went back to normal. But there are chemicals in the blood which are not taken out when the kidneys are under back pressure, and they were building up and building up. And so I did notice I was more lethargic, found it difficult to think before I got the catheter. 
 
And so when the catheter goes in, there’s this enormous pleasure, “Well things are back to normal.” You can actually think straight, and you’ve got energy again.

 

 

Iain couldn’t think of any negatives about living with a suprapubic catheter. He said people...

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Age at interview: 35
Sex: Male
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It takes away the urgent need to get to the toilet in time, because when I got it fitted I had frequent times, maybe wet my pants and that was rather embarrassing. The catheter removed that altogether. That was just taken away, it was no longer an issue. So I would say...
 
People who might be thinking, “Oh God,” you know, “It’s embarrassing,” that kind of thing, what words of hope would you give to somebody who feels that way?
 
Oh any medical person, any medical professional you see, they saw it all before so there’s no need to be embarrassed at all by it. It’s their job. It’s what they do, day in, day out. So they’re used to seeing that sort of thing. To you, it’s embarrassing ‘cos you’re going through it the first time. But to that member of staff who deals with it, they’ve dealt with it hundreds of times, if not more. So there’s no need to be embarrassed at all.
 
Yes. And what would you say would be the main difficulties with it? You know, for somebody thinking about it, they hear all about the positive aspects, what would you say is the main difficulty with it?
 
It’s hard to actually say. I don’t, from my own situation, I can’t see any difficulty in it. I mean for me there’s no down sides, all I can see is pro’s all the way through it.
 
Well that’s good to hear too.
 

Yeah. I can see no downside to it. 

For John Y, the catheter had taken away his anxieties about incontinence. He said it was ‘as good as a cup of Horlicks at night’. He often forgets he has it and says it’s ‘brilliant’.
Ian, who had a spinal cord injury when he was 16, said the catheter doesn’t affect his everyday life'
 

Ian said that if he looks after his catheter and it drains normally, he has no problems with it....

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Age at interview: 39
Sex: Male
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Can you talk a little bit about the day to day life?
 
Yes, normally it shouldn’t really affect it if you look after it and make sure it’s not kinked or anything and its draining properly. You should, it should be okay. It’s just every now and again with infections or sometimes, I don’t know, perhaps it’s positioned a bit oddly in the bladder and slightly blocking the drainage. And you go to bed, lie down and it’s fine, get up after that, yeah. So yes, I think I’ve been quite lucky with it. It doesn’t really affect me that much.
 
I think yeah, apart from the infections every, as I say, a few times a year, I’ve been quite lucky. It drains well. It doesn’t usually give me that many problems. So it can work. And it doesn’t hinder your life that much, and yeah.

 

Some people said that having a catheter had improved their day to day lives – they could go out for the day without worrying about finding a toilet. Charles said that he and his wife could now go out together, which had been much more difficult without the catheter. The catheter has helped the problem of urgency and given his ‘lifestyle a boost’.
 

Frances, with MS, wished she’d had a suprapubic catheter earlier. It has got rid of urgency and...

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Age at interview: 64
Sex: Female
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It’s very difficult to separate the problem of the catheters from the problem of MS. A lot of these problems, I mean you can imagine for anybody if they’re no, to have no control over your bladder and bowels is really probably the worst thing that can happen to you. You don’t think that until it happens. But when it does, it is the worst thing. 
 
So I mean you’re like it as a baby and you can be like it when you’re very, very elderly I suppose. You could have problems, but to go through most of your life with it, it is a big problem. 
 
It’s alright if, you know, you’ve got disabled toilets and things like that where you can get to. With a disabled toilet, of course, at least you’ve got a chance to clean yourself up in them. That’s a, but just to part, you know with MS, when you’ve got no control, no warning, it’s too, by the time you need, you think you need the toilet it’s too late. So that’s, I do think it’s the worst part.
 
And at least with the suprapubic catheter it’s taken away all that, you know. For that side anyway. It has made a big difference. And I can’t say it, well I wished I’d had it done earlier than I did.

 

 
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Hayley can now go out without worrying or having to drink less. She feels more normal and says...

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Age at interview: 46
Sex: Female
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I can go out for the day now. I mean I used to do day trips but sort of three or four hours before we were due home, I’d be wriggling and literally thinking of deserts and you know the whole kind of caboodle…… 
 
So basically, I can stay hydrated. I don’t have that constant occupied thought that I need the loo I can’t go. I don’t have the pain and the fatigue that it caused anyway was quite substantial. Getting comfortable again took hours. 
 
And I feel more normal in a really weird way, having gone through something I thought was exceptionally abnormal to do. It’s actually made me feel more in inverted commas “normal.” 
 
Oh that’s good. 
 
And, you know, I can join in, I can do stuff. And I can be left alone if I need to be for a few hours now, as opposed to frantic phone calls after half an hour, I can’t wait, I’ve got to get on the bed. 
 
Because you could go to the loo and open the valve? 
 
That’s it, I can, and I mean at the moment I can just about open the valve. I realise that might not happen one day soon actually because I’ve got a bit of weakness coming on again. But I also see ways of adapting, using adaptive equipment to do this. 
 
So again if you have MS or MMD or any dystrophy, atrophy, you know think in terms of how it can help you. Think of ways you can help it as well. You know, if it’s something you’re lumbered with and you have no choice, then don’t be scared. It’s not scary. It doesn’t hurt, the changing, having it changed

 

Peter, who has a urethral catheter and a colostomy, finds the catheter easier to manage.
 

A catheter is not difficult to live with. Peter feels lucky to have had very few problems with it.

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Age at interview: 76
Sex: Male
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I think I’ve perhaps been extra lucky, you know. Haven’t had many nuisances, but I don’t find it too difficult. I can manage on holidays, or staying in a hotel might be, well it will be won’t it. But this is much more of a problem, the colostomy, which leaks or the glue coming out from your tummy. And it’s like, so I find this is just a slight nuisance, nothing I can’t sort of manage. 

John Z had become incontinent after bowel cancer surgery and wore pads for a long time. As his incontinence problems got worse, the pads would often be wet through before he’d got to the toilet. He became housebound. Having a catheter made him feel he’d ‘joined the human race again’'
 
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John Z got used to having a catheter after about a month. It's more convenient than wearing pads....

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Age at interview: 64
Sex: Male
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It’s the less of two evils because if you don’t have one it’s pads. It’s pads and, believe me, they are horrible, even though thousands of people have to use them. They’re horrible. And the inconvenience you have to go through, with a catheter it’s far less than having pads. And once, after about a month when you’ve learnt to live with it, and that you’ve learnt all the tricks of the trade, yeah, it’s doesn’t really affect your lifestyle or anything.
 
It’s certainly improved my lifestyle, 60, 70% than having the pads on, or in the house having to jump up and run to the toilet, not making it. You know, you’ve joined the human race again when you’ve got it. And it was thought that, because it’s running all the time and I’m fairly sedentary, that I should have a drainage bag on all the time. ‘Cos the leg bags will probably fill up every 40 minutes or so.
 
Yeah. And how about at night? Do you have a night bag?
 
I do, that’s this. It’s the night bag.

 

 
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James, Hayley's carer, said that her catheter was 'a godsend'. Hayley can now drink normally....

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 Really and truly since then it’s [catheter] been a God send because she [Hayley] can drink a decent amount of fluid. I mean she has to drink a decent amount of fluid, but it really works out brilliantly.

 
You know, there are some problems with it, I mean it’s not exactly all plain sailing. But without it, I just couldn’t imagine doing, life without it anymore. It really is fantastic….
 
You said a little bit how the catheter has impacted your lives. You said it’s made it improve?
 
Oh it really has. I mean the thing is we can, if we can go out for a day without having to be back for the toilet because there’s no public toilet where there’s a hoist, a bed and everything else. That just wasn’t possible. And if we, oh, occasionally when we did, especially when we were in Scotland and we were coming down to London, I’d drive down from Scotland to London and the first thing I’d have to do was get the bed set up, get the hoist out, hoist Hayley up onto the bed so she could go to the loo. And quite often after that she wouldn’t get up again. She’d stay on the bed and that’s, this is actually, because she’s had it now for six, seven years. Seven years? Yeah.
 
I thought she said six.
 
I think it’s, no it’s seven.
 
Oh is it? Okay.
 
Oh I don’t know. Yeah it’s seven years this year, yeah.
 
Right.
 
Okay yeah. And quite often she’d end up on the, sitting on the bed for the evening because getting up again was just too tiring. So it really does have an impact on what you can do for the evening.
 
So it’s really improved the quality of your…
 
Oh, yeah it really has. It really has. And we can go anywhere now, no problem at all. You don’t even think about it. I mean even if we forget to take a bottle, you can always grab a lemonade bottle or something like that. So it’s, you know, it just makes so much sense. 
Some people said that, while other health problems often affected their daily life, (e.g. arthritis, spinal cord injury), the catheter didn’t as long as they looked after it (see ‘Looking after the catheter and catheter site’).
Carol, who had bladder problems brought on by endometriosis, used a catheter whenever she had problems, the longest time for 4 months. Having a catheter was ‘a relief’ as it meant that her bladder could rest.
 

Using a catheter got easier with time. Carol found it straightforward and felt confident dealing...

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Age at interview: 39
Sex: Female
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So tell me about, 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.

 

Living with a catheter wasn’t always easy to begin with but became easier with time. Stewart, who’d had a catheter after prostate surgery, said that, at first, it can seem like ‘a big intrusion’. He encouraged other people to talk about catheters and incontinence'
 

Having a catheter can be frustrating at first and needs adjusting to. Now Stewart has no problems...

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Age at interview: 87
Sex: Male
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It [catheter] isn’t as bad as what it appears to be. Because it does appear to be a big intrusion on your life. And really it isn’t. It might be a bit frustrating and you may have to take one or two simple precautions, but you get used to it. You know, there’s no doubt about it, you will get used to it. 
 
And don’t be afraid of asking people. Four or five or six, eight years ago, I would have been almost afraid of talking to anybody about incontinence and catheters, but I wouldn’t now.
 
 
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Having a suprapubic catheter is no 'big deal'. Finding the right tape was important to Jennifer...

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Age at interview: 26
Sex: Female
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I think the most important thing is that the suprapubic catheter isn’t a big deal. It’s only as big a deal as you make it. 
 
So that’s a good message for other people. 
 
I think, you know, don’t let it rule your life. I think if you sit at home thinking about it, not doing anything, it’s gonna feel ten times worse. If you just get on with life and accept it’s there, it’s not going to seem half as bad as say, you know.
 
Make sure you get the support that you know, because getting the support, it’s something simple like getting the right tape is just so important. It seems nothing to anybody else, but when your skin is sore and you’re pulling it off every morning and night, now it makes a big difference to get something. So if something’s not right, persevere with it and get, persevere getting it changed by somebody. So I think that’s important. 

 

Michelle, with a spinal cord injury, said that the catheter had enabled her to go out and work. Her suprapubic catheter had been ‘the most liberating thing to allow me to live the life that I want to’ and that catheters were nothing to be afraid of.

Emlyn had had a urethral catheter since surgery for prostate cancer and said it might be removed after his radiotherapy to see if he can urinate normally. But he’s ‘not pushing to have it out ‘cos it’s handy and it’s convenient, and I can handle it.’

Stephanie felt reassured that her father, Gordon, had a catheter. He doesn’t have to get up to go to the toilet in the night. At 96, she worried that he might fall or injure himself.

The people we spoke to often said that, as long as the catheter was working well, it didn’t affect their daily life (see ‘Feelings about having an indwelling catheter’). Problems arose when they had a urinary tract infection or blockage (see ‘Urinary tract infection (UTIs)’ and ‘Blockages’). Some also wondered whether their present catheter could be improved on for the future (see ‘Catheter of the future: what catheter users say they’d like’). 


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Last reviewed October 2018.

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