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Living with a urinary catheter

Practical tips and messages to catheter users

The men and women we talked to offered many different types of advice based on their experiences of living with an indwelling catheter. Everyone is different and what works for one person may not work for someone else. Here are some of their suggestions:
  • Don’t be afraid of having an indwelling catheter. Living with it gets easier with time. Talking to other people and asking them about their experiences can be helpful as well as getting as much information as you need.
 

Stuart encourages catheter users to talk to others in a similar situation and looks at the 21st...

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I think my advice would be, before you leave the hospital, ask as many people as possible about their experiences. While there’s several of you in there and you’re in that environment, you’ve got people who are either experiencing it or at least have got the medical expertise. 
 
Alternatively, or well, not alternatively, but also people who re-visit hospitals for annual check-ups or whatever, if you’re in contact with them, speak to them about it too because you’re all in the same boat and, like myself, they may have developed things along the line.
 
At the time that I broke my neck and until very recently, there hasn’t been the 21st Century Catheter website to go on. Don’t be shy about it, get on there, have a look, put in your questions because there’s a lot of catheterised people out there. Therefore there must be anecdotally a lot of stories to be told which tend to stay under covers. Bring them out and help one another.

 

 

Carol says ask your GP about where to get support if you need it. District nurses, continence...

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It really isn’t as bad as you think, and to ask as many questions, and talk to health professionals like your GP about the sort of support that you can get. 
 
So, for some people, it might be appropriate to have access to district nurses, and for other people just knowing that they can phone the continence nurse would be good. If you’re seen in an NHS hospital, then hopefully there’d be a urology nurse specialist who would be able to help. They have much more information about products and can talk to you about your lifestyle and what might work.

 

 

Having to live with an indwelling catheter is nothing to be afraid of and can be liberating. But...

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For me, it’s about not being afraid of a catheter. If you’re fully aware of how you need to properly take care of it, and make sure that if you have carers or you need carers that they know how to best care for it, then it shouldn’t be something that you’re afraid of. You know, as I’ve said to you, I’ve found the reversal of that really. I’ve found that a catheter has been the sort of the most liberating thing to allow me to live the life that I want to. Whether it’s a urethral one or a suprapubic.
 
So, you know, that would be my main message to people. You know, if somebody mentions that you ought to think about having a catheter, then don’t be afraid about it just because it’s something alien being introduced into your system.

 

  • Get all the information and support you need from health professionals. Don’t be afraid to ask questions and keep asking until you get an answer.
 

Melanie advises asking questions and trying intermittent self-catherisationfirst. A suprapubic...

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Try everything. Don’t be pushed into doing what the doctors say immediately. Try everything, give everything a good chance. Try the intermittent. See if you can do it because the women I know, and men, who use intermittent say they have a much more normal quality of life than I do in many ways. They can bounce on and off toilets and live to some extent slightly more normally, feel less handicapped.
 
So if you can do it, try it. Don’t be put off with a few failures. Don’t be put off by the occasional leakage but be aware that if your situation is such that you do need to have a suprapubic, it’s a really good safe option and it’s worked for me. So, yes, that would be my message. 
 
Ask questions. Ask them of the consultant as well as of the nurses and push for as much as you can get. Ask about bladder washouts. Ask about different types of catheter. Ask why there aren’t different types of catheter.

 

 
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Living with a suprapubic catheter isn't a 'big deal'. Jennifer advises getting the support you...

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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 support…it’s something simple like getting the right tape, it is just so important. It seems nothing to anybody else but, when your skin is sore and you’re pulling it off all the, 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. 

 

  • Look after your catheter and manage your own situation as best you can. This includes keeping the catheter site clean and using the right hygiene procedures.
 

Taking responsibility to look after the catheter is important, including cleanliness and drinking...

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Make damn sure you know what it’s there for, that all the things are in place, like you know what you have to do, cleanliness, liquid intake, all that sort of stuff. Look at what’s important from a point of view of maintaining that catheter. So, how often it’s changed, your doctor’s aware that you’ve got it in, doing things like taking antibiotics when you have a catheter change, all those sorts of things. They’re all nitty-gritty little things which will help you in the end. 
 
Make damn sure that you’re on top of your own situation, so you learn about when, your own body when you’ve, when you think you’ve got a, when you know you’ve got a UTI and that sort of stuff. You know, so, and, to be quite honest, demanding that people take notice of the fact that you’re in a medical state where you are open to the things going wrong far more than a normal human being. And, to be quite honest, if you don’t take responsibility now, at the moment, no one else is. And I suspect that will be the case for a while. So, but don’t be frightened, because it’s quite simple. And actually having the catheter in place makes it much easier to live your life normally.

 

  • Drinking lots of water is important – it can help reduce urinary tract infections (UTIs).
 

Ian advises drinking lots of fluid and knowing your own body so you can tell when you have an...

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As I say, drink a lot and what I’ve read, I’ve read quite a lot on cranberry juice seems to come up highly, so I drink cranberry juice and take some cranberry juice tablets as well. And yes, and then, yes, just know your body and know your symptoms ‘cos if you get a twist in the catheter and it’s not draining, you can feel that. And that is a different feeling to when you have an infection set in, which is quite nasty. ‘Cos I usually get, on average, two or three infections a year that need antibiotics.
 
So, yes, just know your body and then be able to contact your doctor and talk to your doctor ‘cos sometimes I can get prescribed antibiotics without even seeing the doctor. It’s just that I know what’s going on.

 

 

Citric drinks can help prevent infections. Alok advises drinking lots of fluids from a large...

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Everyone, even the carers, nurses and doctors, they always say drink a lot of fluids. And also try to drink, like most people say try to drink as much as possible of the citric things, because that helps in getting and keeping away the UTIs. 
 
One more thing which, in my case, I have discovered that it depends; it’s a bit different how you drink the water. Because, in my case, if I drink the water from a glass, after drinking one glass I feel that I’m okay. And even, or if you start drinking by glass, it’s the count, the psychological count; one glass; two glasses, and you can’t drink much. 
 
Whereas in my case, I drink from a bottle. You know, with a bottle you are drinking and you are not counting. So I always keep a big bottle. Not a small bottle. I always keep a big bottle, not a glass. Try to drink from a bottle because that way you, I feel that we can drink more instead of when drinking from a small glass. Or even if it’s a glass, try to keep a big glass instead of a small glass because, even with one big sip more, it makes a lot of difference in my input. Yes. 
 
So drinking and how you drink is very important?
 
Yeah, how you drink also makes a lot of difference. Drinking is okay, but how you drink, in my opinion, also makes a lot of difference. Because, as I told you, if I drink from a glass, I will drink one or a maximum of two. And instead, if I am thirsty, if you give me a big bottle of one litre, I can drink half a litre just like that. 

 

  • Have spare catheter equipment at home and when travelling. Even when travelling locally, it helps to have spare drainage bags and other catheter equipment for emergencies. Some people recommended taking your own equipment into hospital as well.
 

Stewart advises taking your own catheter equipment when you go anywhere. Hospitals don’t always...

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Take your equipment with you, your own equipment if you’re on or going on holiday… I always make sure that I have a spare, have some spare, well one or two spare catheters and bags and flip flows. And make sure, if you know you’re going to go into hospital, ask, take some of those with you because even the hospital, even if the hospital say that they have a catheter, it may be a different type altogether. And, if they haven’t got what you need, then they try to fit you up with what they think is the nearest, but very often the nearest isn’t near at all. 
 
There have been times when I’ve been in hospital and been fitted up with pads and so on that were obviously not right. They were more like for, you know, for pregnant mums and so on. Much too big and clumsy. 
 
I mean bags, I’ve mentioned those. Taking things to hospital. 
 
That’s very good advice. 
 
I think it is, I think it’s either that or trying to make sure that the hospital has got all it needs. But, of course, there’s so many different types of them. And you can get a catheter from one firm and it can be quite different from the one that you’re used to. 

 

  • Some people recommended using a leg bag strap and, if necessary, taping the catheter to the abdomen. This reduces the likelihood of the catheter being ‘pulled’. Badg suggested alternating the leg that the bag is worn on. The catheter can then lie in a different position each day, minimising soreness at the catheter site.
  • Make sure you have all your catheter equipment ready before having a catheter change. It’s good to have spare equipment for emergencies but make sure the date hasn’t expired on any of the supplies.
 
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Badg wears his leg bag in different positions to give his leg a break from the straps. During the...

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I leave the leg bag attached to my leg by one strap, in a different position where it’s normally done up, so that gives my leg a break from the straps, and it means it’s fairly safe from a turning point of view. Certainly when I was in hospital they used to pin the leg bag to the bed, which used to worry me a bit, especially if I fell out of bed or something like that, not that I ever did. But it seems to me that if it’s attached to my leg, it’ll go with me. 
 
So during the day, it’s in a different position?
 
During the day, well actually during the day it’s on my left leg and during the night it’s normally on my right leg. Generally that’s the way I sleep, but if I’m somewhere else it might finish up here 
 
How often do you need to change the bag? 
 
The bag I change weekly. 

 


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Last reviewed October 2018.
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