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Living with a urinary catheter

Leaking

Leakage around the catheter, or by-passing, is usually caused by a catheter blockage or bladder spasms. Other causes include infection, catheter encrustation, and loss of elasticity of the female urethra. Catheter leakage is common affecting many  people with indwelling catheters.
 
Annie, who has a suprapubic catheter, said bladder leaks were often the first sign of her having a urinary tract infection (UTIs). Her doctor prescribed a daily antibiotic to help prevent UTIs. Peter Z, who also had a suprapubic catheter, found leaking a constant problem.
 

Peter Z sometimes leaks urine when he has a blockage. He rarely goes out now but found it...

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Age at interview: 76
Sex: Male
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I think just people should probably drink more, not just me. And I think the actual mechanism needs explaining really. And I have leakage problems. And it’s usually the exit from my bladder and it’s quite embarrassing. I think it would be difficult if one went out a lot, whereas I don’t, and if I was still working for instance it could be very embarrassing. 
 
Problems of leaking. 
 
Yes. Leaking, particularly, it’s just impossible, just going from here to the kitchen. I might have said to you, I certainly would, occasionally friends are, people who don’t know me too well and I’ve been here, oh we’ll go to the kitchen and it’s sort of spouting, so then I’ve got to ring the nurse. It doesn’t happen at convenient times normally. 
 
And then the nurse comes and what does she do? 
 
Normally just puts a new catheter in. Normally, also looks at it and they don’t dwell on the blockage and I’m sort of wondering what I’ve been drinking that’s done anything wrong then. 
 
I’d love to know what does cause blockages obviously.

 

One of the problems with a suprapubic catheter is leaking urethrally, and this happens more often in women than men. The urethra is the tube that carries urine from the bladder to the outside of the body. Melanie leaked urethrally when she was using a flip flow valve without a leg bag. John Y, who has a suprapubic catheter, said his urethra sometimes leaked when the leg bag got too full.
 
 

Melanie was upset when she leaked in her friend’s car. She no longer uses a flip flow valve and...

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Age at interview: 55
Sex: Female
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I’ve never leaked through the site of the suprapubic. I did leak for a while when I was first using, when I was doing the intermittent, the flip flow using the suprapubic. I did start leaking urethrally. I blamed myself for that because I didn’t empty my bladder often enough and I think I overstretched it. I started leaking urethrally. I did it in the cinema one day – and it really kind of upset me. I had to get in a friend’s car to go home, wet the car seat and that traumatised me a bit. I think that was another significant reason for going back to a leg bag because I had more control and more insurance policy if you like that I wasn’t going to leak in public. 

Stewart had had many leaks when he had a suprapubic catheter. He now has a urethral catheter but still leaks a bit.
 

Stewart wears pads because he often has small leaks even with a urethral catheter. He gets the...

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Age at interview: 87
Sex: Male
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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 [urethral].
 
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. My routine is that, during the day, as now, I just have the catheter and the flip flow. But, when I go to bed, I put on a night bag and that I find is very, very good because it enables me to go right through the night, which is so important.
 
Yes. And, in terms of leakages, are they more likely to happen at night or it can be any time of the day?
 
No, they’re less likely to happen at night. I don’t know whether it’s something to do with being in the horizontal and vertical position, but no it’s, yes a certain amount of leakage but it’s mainly during the day.
 
What kind of problems have you had with the leaking? Is it quite often or has it been less over the years or any difference or changes?
 
No, there’s a, it isn’t a big leakage really. You know, and I have found though the pads very good. They relieve me of quite a bit of worry and concern because they are quite good. But it’s nearly always a small leak there.
 
Yes. And do you get the pads from the doctor’s surgery or does the pharmacist come and bring them for you?
 

I go and collect them from the pharmacy.  

Some people talked about having other kinds of leaking, for example when disconnecting the catheter and drainage bag. Carol leaked when she forgot to switch off the valve after taking off her night bag; Kenneth had leaking when the catheter balloon burst. He woke up in a wet bed.
 
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Ann sometimes has accidents with her catheter and drainage bag, including disasters at night when...

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Age at interview: 81
Sex: Female
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From time to time, the catheter parts from the night bag at night. Presumably I’m thrashing around in bed. And then I wake up to a flood in bed. And in fact this very afternoon, just when I was waiting to see you for this interview, I found that the little switch at the bottom of my day bag had moved, probably caught on my skirt or something, and I was dribbling a bit. So I had to go and mop myself down and dry myself off. And, if you’re at home, that’s manageable. If you’re not at home, it’s very difficult. 
 
I think I didn’t realise how difficult managing the bag might be. And I have had several disasters when the catheter has slipped away from the bag’s moorings and there’s been a flood, which is…. what I do now is I anchor it with a bit of micropore tape. And that seems to make it behave a bit better. 
 
I think it would have been helpful to have been told you may find a snag with the catheter slipping out of the moorings for the bag, and especially at night. So I hadn’t realised that it was possible until it happened and I woke in a flood. And having, I’d hoped I’d said goodbye to having flooded beds after the [suprapubic catheter] op, it was really tough to find that.

 

 
Jack, who’d had a urethral catheter since 2011, couldn’t decide whether to keep it or have an operation on his enlarged prostate. The surgery would mean he could be catheter-free. His night bag leaks if it’s not attached properly and a blocked catheter also leads to leaking.
 

Jack’s night bag leaks if it comes apart from his catheter. He’s also had problems with the day...

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Age at interview: 77
Sex: Male
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The nurse weighed my urine and she said I’d not passed enough, so she put a catheter back in. I went back to the hospital then, I don’t know how many weeks later, and the nurse there was happy enough for me to leave the catheter in. But I suggested to the doctor that I should have the operation to have it removed. It would be a prostate operation.
 
So I went back to the hospital and I was examined thoroughly and the nurse said it would be a difficult thing because I would lose a lot of blood. I had to have blood transfusions when I had my hip done. And also I would have difficulty then in holding water. I would need to go the toilet often.
 
So, instead of having difficulty passing water, I would have difficulty holding water. And there was a question, I had a heart murmur, not too serious, just a heart murmur. Anyway, we were going to go ahead with the operation and they rang me to go back in and see the anaesthetist. 
 
And in between time, I’d been put off and I’d decided not to have the operation. The doctor in fact, when I saw the doctor and asked him if I could have the operation, he was quite surprised because a lot of people won’t have the operation. So I put it off, and decided to live with it. Unfortunately, I’ve had problems since in that I’ve had to have it [the catheter] changed often.
 
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 were 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? 
 
Yeah. 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. 

 

Gavin had more leaking when a catheter was first fitted. Since his spinal cord injury his bladder and bowel care has been more important than being able to walk or use his hands.
 

Leaking can stop you from living a normal life. Gavin gives some practical advice for going out.

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Age at interview: 28
Sex: Male
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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. 
 
And people have talked about leakage and leaking, and being out somewhere and… 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.

 


Last reviewed October 2018
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