Continence and cathererisation
Incontinence, the loss of control of the bladder or bowel, is extremely common after stroke. Whether this is caused by the stroke, or a consequence of poor continence care early after stroke, is unclear. Main instances of incontinence would be avoidable if there was comprehensive assessment of continence problems and early intervention to promote long term continence. Unfortunately, few clear guidelines exist, and many professionals do not know how to prevent incontinence. Nearly half of all people who have had a stroke experience some incontinence in the weeks afterwards, around 1 in 5 still have problems when they go home but can still get better afterwards. The Stroke Association have a useful factsheet about stroke and incontinence see more information in our Resources section.
Many of the people we spoke to had difficulties with getting to the toilet when they were in hospital and had to use bed-pans, bottles or commodes which many found embarrassing or distressing (see 'Early care experiences').
Some of the people we talked to had a catheter - a tube to drain urine from the bladder - when they were in hospital or a care home after their stroke, although these days it is recommended that catheterisation should be avoided unless there are specific exceptional circumstances. One person who was in a care home after her stroke said that it was another nuisance because she had to learn how to attend to it every morning, although she got used to it and it was taken out after a while. A man whose catheter came out found it embarrassing when it was put in by a female doctor.
- Age at interview:
- Is a widow with 2 adult children and a retired shop manager. Ethnic background/nationality' White/Scottish.
So while I was in, in the care home, I had a' what do you call them? Peg?
Yeah. Because I had to be attended to every day.
Oh, was it a catheter?
A catheter. Mm hmm. That's right. I had a catheter. That was another nuisance [laughs]. Oh dear. However, I had to attend to it every morning, you know. So I got quite good at that. However, that finished but they, they left the, all the equipment in, just in case it came back again and that was a nuisance.
With the catheter, can you explain, was it, when you had it put in, what was it like having it put in?
Quite painful actually. But it was a terrible nuisance having to attend to it all the time, you know. However, I got over it.
And when they took it out, did they just take it out or did they gradually take it from you?
No. No. They just took it out. And that was that. I went back to a normal diet and that.
And did they give you any advice when you stopped using the catheter? Sometimes people are told to drink plenty of water?
No, I can't remember having told, been told that, no. But this is quite a performance every morning, you know, with this catheter. But' however, I was quite determined to do everything I was told to do, so as I would get better quick [laughs]. But it wasn't quick, it was a lengthy business.
- Age at interview:
- Is married with 2 adult children. He was a master plasterer but now medically retired. Ethnic background/nationality' White/Scottish.
How about in the hospital? Did you have a catheter?
Yes. Uh huh.
How was that? Do you remember that? Having to have that or have it taken out at all?
I remember one night I pulled it out and I had to get it put back in and it was a lady doctor and I remember feeling very embarrassed about that. If I hadn't of needed it I would have said 'No, no.'
Catherisation can increase the risk of urine infection which is very uncomfortable and can be life threatening. One person described the symptoms of urine infection after a catheter as needing to go to the toilet and feeling as if he were wetting himself which he felt was the lowest point of being in hospital.
- Age at interview:
- Is a married process operator with 2 adult children. Ethnic background/nationality' White/Scottish.
I really, really felt, the worst, the worst thing that I really, really felt, was when they took the catheter out. I had a catheter in obviously for [sighs] about 3 weeks and they took the catheter out and 9 times out of 10 you get an infection, you see. And it makes you feel as if you're needing the toilet all the time but you're not really. It just feels that way. And there was one day they took me down to have an x-ray. Now, normally, I'd been getting x-rays in my bed. They'd put the plate behind me, the camera was in front of me and they took the x-ray there and then, you see. But this day they took me down by wheelchair to the, the x-ray department and going down in the wheelchair in the lift was a long, it seemed a long journey going down in the lift. I had to wait for an x-ray being taken, got the x-ray taken and I had to wait on the porter coming back and I felt as if I was wetting myself and that was really, really humiliating. I really felt, I felt the pits, you know, and it was before my wife came in and she said, 'What's wrong with you?' and I didn't explain, you know. I said, 'It's just this catheter', you know. But that must have been the lowest, lowest point. I was so, I felt, I felt I was wetting myself, you know. There was nothing I could do. I had been to the toilet before I went. I knew I was going to need, you know, and I felt, so humiliated. I really felt so low, it was ridiculous. It really, really was. That was a low point. The lowest point I would think, I would think possibly the lowest point.
Another person who had an infection after a catheter was treated with antibiotics which gave her diarrhoea. She described this as worse than the stroke and it delayed her rehabilitation because it made her weak.
- Age at interview:
- Is a married mother with 2 adult children. She is a retired hospital ancillary worker. Ethnic background/nationality' White/Scottish.
Well, I had a catheter in all the time for, for quite a few weeks I had a catheter in and I had a very unfortunate experience because I wasn't there very long when I got a, an infection in my urine and they gave me antibiotics and the antibiotics caused me to have terrible diarrhoea. Oh, it was worse than the stroke, it was worse than the operation and then they changed the, the antibiotics to another one thinking that would do it but it only made it worse and I was like that for I think about 10 days and that really took, it took all the strength out of me. The result was the physiotherapy people couldn't get me started with physio or anything for a while because I was so weak. It weakened me. But that was really a bad complication afterwards. It really was. It was unforeseen too.
Another man's wife had noticed that his aggression was worse when he had a urine infection.
Overnight catheters could sometimes leak. One man explained that he occasionally lay on the tube which caused a leak.
- Age at interview:
- Is a married father with 1 adult child and is a retired lorry driver. Ethnic background/nationality' White/Scottish.
Can you tell me about the catheter now? Do you mind talking about that?
Aye, oh, it's OK. But it didn't always work because often the bed's damp after a wee while and' I say to the nurses the other day I said, 'Are you not getting fed up with me here?', they said, 'We don't get fed up' [laughs] 'That's what we are paid for' so that was OK cos you, you feel guilty about wetting the bed and things like that but it wasn't my fault really because it was the way that the catheter was on, I think. It was because once I had a long tube on it to take the water, the tank sits on the floor, to let you understand, so you have a length'
You have something that goes, when you go to sleep, do you have something that sits on the floor?
Aye. Mm hmm.
And were you worried it was leaking?
I was worried I was leaking before sometimes. It went into the long tube and that's what got me you see. Anyway, it was the way, maybe I was lying on the top of it, I don't know but, the tube, you know, that wasn't too good but that's what I think. I think, I think maybe I was squeezing the tube and it couldn't get through, ken. Anyway, we'll forget about that I think.
Around 1 in 7 people with a stroke are left with long-term continence problems. One of the people we spoke to was doubly incontinent after his stroke (having problems controlling urine and faeces) and was cared for at home by his wife. They explained that his bowel care was managed by medication to constipate him and a nurse who gave him an enema three times a week. They talked at length about the problem of infections with catheters, which they found did not occur when instead of having an internal catheter, he was able to use an externally worn sheath catheter (like a condom with a tube and drainage bag attached).
- Age at interview:
- Is a married father with 1 adult child and a retired joiner. Ethnic background/nationality' White/Scottish.
Wife' Oh yeah. When [my husband] came home from the rehabilitating hospital, he had a catheter and he also had to get a nurse in three times a week for a bowel management because they said he'd no bowel control. He gets an an enema...
Husband' Excuse me.
Wife' 'three times a week, Monday, Wednesday and Friday but after, it must have been about a year, the catheter was always blocking and there was, it should last about two months but one month you'd to get about four, didn't you, in a month and he's in a lot of pain when it blocks. So' I'd heard about these sheaths we got him them, we done away with the catheter and he , it's like a sheath, but they tend to come off quite easy, you know. So he was wet quite a lot at first but once I got used to putting them on, they stayed on good but when I took the heart attack, he had to get put in a nursing home and they couldn't put on the sheaths and he was wet all the time, so the nurse went in put a catheter in'
Husband' That's right.
Wife' 'and he's had the catheter, that's four months but we've been having problems with that again because that's about four catheters again you've had in the last month.
Wife' So we might have to go back to the sheaths but that's the only problem with them. There's a lot of people can't put them on [laughs].
One woman who cares for her mother after her stroke (who also has dementia) described that her mother's continence problems were the most upsetting aspect of her problems. Her mother uses continence pads which work well although she sometimes puts them the wrong way round.
- Age at interview:
- Is a married mother of two children and is carer. Ethnic background/nationality' Scottish.
One of the degrading things about mum having the stroke and the dementia, is the lack of the not so much the bowels, she's not so bad that way but the urine. She's got to have, wear pads now. She's had to wear them, immediately, almost immediately after she had the, well almost, when she came up here from Kent she's had to wear the incontinence pads. She's found this a bit, that was distressing to her at the beginning but we just kept telling her that that was part of the illness as well that it's affected her that way and she accepts it better. She accepts it as a physical illness, she's happy to accept quite a lot of the things that are happening as a physical illness rather than a mental illness, the dementia. We just don't go there at all, we just make it all physical so that she'll accept it all.
She has had a number of accidents. Quite a number of times actually. We were all down to Kent again for my niece's wedding in April and it was a wonderful time, we were all there. I went a couple of days early to help my sister out, and my brothers and my sister brought my mum down. And it was a really lovely weekend, we all thoroughly enjoyed it. And because I've got my grandson with me so much, at one point , my sister went to take my mum to the toilet, I wasn't exactly standing there so my sister took my mum to the toilet and my grandson shouted to my sister, he's got a lisp as well and he's saying, 'Auntie', 'please make sure the pads the right way up because she'll wet herself,' he's saying and it was so funny, we were all in, we tried not to let my mum see us laughing but we were all laughing because he's there when I'm, if she's had a wee accident, she sometimes puts the pad on upside down so that the urine is actually hitting the, you know, the protective part, the plastic part, so then she's maybe wet her trousers and things so although she's wearing them if you're not actually there to make sure it's the right way up she can still have accidents and this is quite, this is so upsetting for her because she's not that, that bad yet with the dementia, now and again she's, so it, it really upsets her. So we have to have them all delivered as well and we've got to keep a note if they're nearly running out and. There's a lot you've to remember, there's, her hearing aid batteries, there's the incontinence pads, the bowels she can get quite ill about the bowels because sometimes she gets very constipated and that upsets her.
The Stroke Association has a useful factsheet on ‘Continence problems after stroke’ and so do Chest, Heart and Stroke Scotland.
Last reviewed August 2013
Last updated August 2013