Age at interview: 64
Brief Outline: John was diagnosed with bowel cancer in 1996, in his late fifties. His bowel was removed and his bladder muscles were damaged. Several years later, he was fitted with a urethral catheter. A carer visits John 4 times a day.
Background: John is a retired staff liaison officer and single. Ethnic background / nationality: White British.
More about me...
John was diagnosed with bowel cancer in 1996, when he was in his late fifties. His bowel was removed and his bladder muscles were damaged. John said he could control his bladder for a couple of years, though started having minor problems from about 6 months, including leaking. About 7 or 8 years later, the problems became much worse and, even though he wore pads, the pads were often wet through. He often wet himself before he got to the toilet and sometimes this would happen up to 8 times a day. It became very difficult to go out and John was referred to a consultant urologist.
John had tried intermittent self catheterisation in the past and it hadn’t worked very well. He was also prescribed oxybutynin, a tablet used to reduce bladder spasms. Later, under a different consultant, John was offered a permanent indwelling catheter. After discussing the advantages and disadvantages with a urology nurse, John was fitted with a urethral catheter.
Although John doesn’t go out very much, he uses a leg bag when he does. He lives with arthritis, osteoporosis and a type of leukaemia called thrombocytopenic purpura, a condition that leaves him feeling very tired. Idiopathic thrombocytopenic purpura is the condition of having an abnormally low platelet count. It is diagnosed with a blood test.
John drinks a lot of fluid to help prevent the build up of sediment in his catheter. He is supposed to have his catheter changed every 10 weeks or so by a district nurse but said that, often, it needs changing before then because it gets blocked.
A day carer visits John 4 times a day. John said he felt ‘well looked after’ and was happy with his care.
When John Z became incontinent, he wore pads. He tried ISC but decided on a urethral catheter...
How it started with me is I had bowel cancer. And it’s a sad story, mine. But I had bowel cancer and, of course, part of the cure was taking my bowel away and my muscles for the bladder and that got damaged. But I did manage to control it a little bit for a couple of years.
Then about seven or eight years ago, I became really incontinent and started having to wear pads and things like that. And there was a consultant and he was really pressurised, you know, at his surgery there were queues and queues and queues. So we were on a conveyor belt and it was like, “Okay, I’ll see you in a month, keep taking the tablets and just get bigger pads.”
Anyway, we’ll jump on two or three years and a new consultant came and more or less took over from the old one. And I think we got the first consultation with him. I told him more or less this story of what happened. And it had become, it was running all the time more or less. And it cramped my style. I couldn’t go out or anything. I had to wear these flipping pads and, after a while, they started to smell. And they get full up so, in the end, you were wet through. He said how do you fancy self thingy-ing?
Self-catheterisation. Anyway, I weren’t right keen on that because, as you know with diabetes, your manly parts should I say tend to disappear and it’s very hard to do. So he said do you fancy having one in all the time? You know, I weren’t overly keen with it but, having said that, I thought of all the advantages and disadvantages. And there was a really good nurse at Urology…. and she sort of counselled me. And it was decided that I’d have one of these.
John Z wore pads but was often wet through before he got to the toilet. It put him off going out....
There was a consultant at the hospital, and he was really pressurised, you know all the, at his surgery there were queues and queues and queues. So we were on a conveyor belt and it was like, “Okay, I’ll see you in a month, keep taking the tablets, and just get bigger pads.”
Anyway, we’ll jump on two or three years and another doctor came as a consultant and more or less took over from the old one And I think we got the first consultation with him. I told him more or less this story of what happened and that. And it had become, although it was running all the time more or less. And it cramped my style. I couldn’t go out or anything. I had to wear these flipping pads and after a while they started to smell. And they get full up so, in the end, you were wet through. And he said how do you fancy self thingy-ing?
Self-catheterisation. Well I’d done that previously with a drug that you put down and it was oxybutynin. I used to have to catheterise yourself, then put this stuff down and I said that was rubbish, that. That was rubbish. So he started me on oxybutynin orally.
Anyway, I weren’t right keen on that because, as you know with diabetes, you’re manly parts should I say tend to disappear and it’s very hard to do. So he said do you fancy having one in all the time? Ooh. You know, I weren’t overly keen with it but, having said that, I thought of all the advantages and disadvantages. And there was a really good nurse at urology and she sort of counselled me. And it was decided that I’d have one of these.
John Z got used to having a catheter after about a month. It's more convenient than wearing pads....
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.
John Z said that a blocked catheter is very painful. He calls out a district nurse who changes it...
When it’s blocked up, the pain is horrendous. And that’s, what’ll probably happen then it’ll come out. Or it doesn’t come out, what it does the balloon comes past, oh what’s that gland there? What’s that gland men have?
The prostate is it? Is it by the prostate?
Prostate that’s it, so if it’s gone past the prostate then it’ll bypass and that and
And that’s when you need to call the district nurse?
Does she change the catheter then?
How often does she usually come to change it?
It’s changed, basically it’s changed on a ten week cycle, but I’ve never managed to get to that ten week cycle. Because it comes out before then.
Because of blockages?
It’s probably the amount of sediment.
John Z said catheters are 'a brilliant idea'. They shouldn't separate from the leg bag or get...
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It’s [the catheter] a brilliant idea but I know they’ve been using them for years. But I don’t think it can be improved upon, how it works. But some of the materials that they use are a bit suspect. And they tend to pull apart, which can be, if you’re in bed and they pull apart, it leaks a lot. So you really need, oh what’s the name of them now? I can’t think these pads underneath you.
There’s a name, Kylie, they call them, the Kylie, and you need them underneath you because they do. So if the materials could be improved upon and how they connect together can be improved upon, well the actual working part of the catheter and the insertion and what have you, I don’t think they can change it. Because it’s a brilliant concept.
You might need to have some sort of filter that stops sediment building up at the entrance to the catheter, and stop that happening so it gets, doesn’t get blocked up. But, apart from that, I can’t think of anything else to improve it.
John Z felt that he was very well looked after. Carers paid by the local authority came to see...
How often does the day carer come in?
Four times a day. And she does a sit on a Thursday. At about two o’clock, there’s a chap then from social services come in to help me with my correspondence, my money, sorting my finances out and what have you.
So I’ll be really honest, I’m well looked after, I’m one of the real lucky ones. I’m fairly well looked after but, having said I was a Personnel Officer [in the NHS], I know whose door to knock on. I know who to ring up, which is unfair, but to me it’s not you know, it’s not what you know, it’s who you know. And it’s really helped me that a lot.