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Ian

Age at interview: 39
Brief Outline: In 1988, when he was 16, Ian broke his neck whilst playing rugby and became paralysed. He had a suprapubic catheter for 5 or 6 years and then a urethral catheter. Later, he was fitted with suprapubic catheter again, which he has had for over 10 years.
Background: Ian is married. He lives with his wife and full-time live-in carer. Ethnic background/nationality: White British.

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In 1988, when he was 16, Ian broke his neck whilst playing rugby and became paralysed. He was taken to hospital and, when he came round, he realised that he had been catheterised. He had an indwelling suprapubic catheter. He spent about 8 months in hospital, some of that time in a spinal unit. 
 
Ian’s accident caused a serious spinal cord injury. He lost use of his hands and had little use of his arms. Losing the use of limbs and torso is called tetraplegia. 
 
Ian had his first catheter, a suprapubic catheter, for about 5 years. He said he often had blockages and, sometimes, a district nurse had to come round to change it every 2 weeks. 
 
Ian uses a catheter maintenance solution (CBG and Solutio R) which has helped enormously with blockages. He now has his catheter changed every 10 weeks. Recently, Ian said a clinical nurse specialist visited him to discuss reducing the use of the catheter maintenance solutions as they were working well. Ian uses a night bag all the time and this is changed twice a week by his carer. 
 
Ian advised other catheter-users to drink lots of fluid and know their own body so that any unusual symptoms can be dealt with quickly. He drinks cranberry juice and also takes cranberry capsules. He gets 2 or 3 infections a year, on average.  
 
Ian said that having a catheter did not have a major impact on his day-to-day life and he felt he’d been lucky with it. He said he sometimes gets over-granulation of the skin around the catheter site, which a district nurse deals with by using a cream. Although he has his catheter changed every 10 weeks or so, a district nurse visits 3 times a week to help with bowel care and any catheter related issues. He said he used to have 3 bladder washouts a week but now has 2.
 
Ian has a full-time live-in carer from an agency that specialises in helping people with spinal cord injuries. These carers are also trained to deal with catheters. His carer helps him with washing, dressing, feeding and generally looks after him while his wife is at work.  
 
Ian praised the information he was given at the spinal unit when he was first injured and, later, from district nurses. He was happy with the care he’d been given over the years. He said district nurses had shown him how to change a urethral catheter and, on one occasion, he was able to instruct his brother on how to change it when there’d been a problem.  
 
Ian’s first catheter was a suprapubic catheter, which he had for 5 or 6 years. This was then changed to a urethral catheter but, because it was wearing away the end of his penis, he was fitted once again with a suprapubic catheter. He was unsure how long he’d had the urethral catheter but has now had the suprapubic catheter for over 10 years.   
 
 

 

 

After Ian broke his neck, he was told a lot about many aspects of his care.

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There was a lot of information given in the Spinal Unit. You would be taken into a room with others, told about different aspects of your care. So you’d be told about catheters. You’d be told about pressure sores, told about food and drink. And so yes, at the beginning, yes there was quite a lot of information, which was good. 

 

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.

 

 

A urethral catheter was eroding the end of Ian’s penis so he changed to a suprapubic. He’s now...

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In 1988 while playing rugby for a school team, I broke my neck so was taken to hospital. And so didn’t have a choice. And when I came round I didn’t realise I had a catheter for a while ‘cos I didn’t know that was going on. But I had a suprapubic put in then. And then a few years later they exchanged it for a urethral one. But then changed it back again about ten or so years ago to a suprapubic, so I’ve had one for quite a while, yeah.
 
Did they discuss the changes with you? Were you given much of a choice? Obviously at the beginning you came round and you had one so that was what they decided what was best at that point.
 
Yes and then they thought, I think they said a urethral one would be easier to change in case of blockages. But then the urethral one was sort of eroding away the end of the penis, so they had to change back and put a [suprapubic] one in. So I sort of had one in situ probably as long as at least ten years.
 
Yeah. So in 1988 when it all happened, how old were you at that point?
 
I was 16.

 

 

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

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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.

 

 

Knowing your own body is important so you can be aware of the symptoms of a UTI. Ian feels hot,...

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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.
 
Right.
 
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.
 
What are the symptoms for you when you’ve got an infection?
 
It’s normally hot and sweaty and you can really feel your heart beating in your throat. And there’s sometimes a squeezing and a banging on the back of your neck when it’s…
 
So you know everything about it every time and ring the surgery?
 
Yeah.
 
So those antibiotics are for when you’ve got an infection?
 
Yeah.
 
Are there other medications every day that you also take?
 

No, not daily, no. 

 

A few years ago Ian’s catheter started blocking every 2 weeks. He started having bladder washouts...

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It was blocking quite a lot and I’d need the nurse to come out sometimes, this is probably about perhaps looking three, four years ago, sometimes blocking every two weeks. So we tried lots of things to help it but nothing seemed to work. And then they put me on catheter maintenance solutions, these CBG and Solutio R, and I’ve been having those during, when the nurses come and visit and yeah that’s sorted all the blockages out. And now it can go ten or twelve weeks before I need a change, so that’s helped a lot.
 
Yes. That’s very good. How often did it need changing before that? Before those solutions?
 
Sometimes it was every two weeks it would block, sometimes less.
 
Can you tell me a bit about the solutions for anybody who might want to know more about them?
 
Yes. I think they are solutions which are slightly citric. Solutio R’s got more in it that the CBG. And they’re attached to the catheter and drain through just to clear the crust, the crystals that form inside the catheter and at the tip as well. And yes they’ve got like two sections, you run one in and out and then the other one in and out. And it keeps it clear and running and it’s really worked for me.
 
Quite recently, I had a visit from a nurse clinical specialist, which was just the other week to talk things through about the catheter. Yeah and she’s coming back again in December so yeah, that’s been good, yeah.
 
What kinds of things is she, you know, hoping to work with you on, or to improve?
 
Just, ‘cos I haven’t seen her before, we just talked how things were going and we talked about the catheter maintenance solutions and perhaps reducing their use, since they’re doing the job.
 
So, as they’re doing their job, reduce the amount you use?
 

Yes. ‘Cos it’s all putting things in your body and, if you don’t need them to be there, if they’re working. ‘Cos I used to have them used to test the PH of the urine. And, if it was a certain alkalinity, then I would have a catheter solution, sometimes that was three times a week. And then the nurse specialist who came said, “Well sometimes its not that reliable testing the pH.” So sometimes I was having the wash outs three times a week, but I’ve gone down to two at the moment, and possibly down to one if it’s working. 

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