Peter Z

Age at interview: 76

Brief Outline:

Peter was diagnosed with MS when he was about 40. In 1985 he collapsed and was taken to hospital. When he woke up, he had a colostomy and a urethral catheter. He now has a suprapubic catheter. He has lived with an indwelling catheter for over 25 years.

Background:

Peter is a retired corrosion engineer and lecturer for a gas company. He has 3 adult sons and is separated. Ethnic background/nationality: White British.

More about me...

After many years of various symptoms, Peter was diagnosed with MS when he was about 40. He managed to carry on working until he was 58 but had to stop because his speech was getting more and more slurred when he was tired. 

 

In 1985, Peter collapsed at home and was taken to hospital by his sons. When he woke up, he said he’d had an emergency colostomy. His colon had been removed. When he came round, he had a colostomy and a urethral catheter. Peter said he was given very little information, though a nurse showed him how to empty his catheter into a bedside container. Other nurses told him more about his colostomy. He would have liked more information, particularly a demonstration on how the catheter works and how to care for it. 

 

Two carers visit Peter twice a week to give him a shower. He empties his leg bag into a bucket. Another carer comes in daily to empty the bucket. Peter said that different carers visit him, all from an agency, and that some carers were better than others. He felt many were extremely busy and rushed in and out. Only a few had time to have a chat. 

 

A district nurse changes Peter’s catheter usually when there are problems. Peter said that, although his catheter was meant to be changed every 14 weeks or so, this is rarely the case because of blockages. He said the blockages tended to be emergencies that happened during the night. He then has to phone the emergency telephone number and a district nurse comes and changes his catheter, usually within an hour of his call. Peter said his catheter seemed to block unpredictably, whether he’d been drinking lots of fluid or not. He felt, though, that maybe he needed to drink more. He said that, though the catheter changes could sometimes be painful, he had no pain on a day-to-day basis because of the catheter. 

 

Peter was first fitted with a urethral catheter but this was later changed to a suprapubic catheter. He changes his leg bag once a week, and more often if it looks dirty. Peter said he has leakage problems and these can be embarrassing. He said it would be more embarrassing if he went out but he tends to stay at home. 

 

Peter said he manages well with his catheter and rarely has urinary tract infections. He has more problems living with his colostomy.  

   

 

Peter Z woke up to find he had a colostomy bag and urethral catheter. He has lived with an...

I just woke up in hospital and there was this catheter in, and I had to…. They gave me a wheelchair and a catheter and I just thought, “Oh I’m in trouble here.” And that was just, I didn’t know what was happening until I woke up sort of thing, which….

 

So you’d gone into the hospital for?

 

Well a colostomy, I’d been taken in as an emergency, and woke up with these gi-normous scars and a little bag on me, here.

 

How long ago was that?

 

Oh. That must be, oh I can’t think of a date, 1984. It’ll be 30 plus years I suppose. I think it was 1985.

 

A catheter is not difficult to live with. Peter feels lucky to have had very few problems with it.

I think I’ve perhaps been extra lucky, you know. Haven’t had many nuisances, but I don’t find it too difficult. I can manage on holidays, or staying in a hotel might be, well it will be won’t it. But this is much more of a problem, the colostomy, which leaks or the glue coming out from your tummy. And it’s like, so I find this is just a slight nuisance, nothing I can’t sort of manage. 

Because of blockages, Peter Z rarely gets through the whole 14 weeks between catheter changes....

Usually you used to have the catheter changed every fourteen weeks?

 

That was the hope but, after a while, after you’ve had one change, it was the next change ten days, and ten weeks sorry and then it gets shorter and shorter.

 

And now what would be the average now?

 

But I get, I don’t know it’s a bit difficult, it’s just happenstance, and it’s a bit awkward I feel. I would love them to say, “Well we’ll come and do it again in nine weeks’ time.” But I have to call them out every time now. It’s not as if they can put me on a rota and see when it’s going to be, it’s on the 10th February or something,

 

So you call them out now?

 

Well that seems to have happened all the time yes.

 

Because there was no fluid…

 

Yes. That is invariably the cause of the blockage. I think it’s the lady [district nurse] who came this week said, “I’ve got these little flush things, I’ll just…” They’re files of water in plastic tubes and it never works.

 

Right. So

 

I always do them. Try and wash it out. Nothing happens. And it doesn’t seem to be the result of say I’ve been drinking too much orange squash or something. ‘Cos it always just seems to be no way I can correct it as it were.

 

It just gets blocked?

 

It just happens, yes. 

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

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.

 

Peter Z is often told to drink more. He drinks cranberry juice though doesn’t enjoy it. He drinks...

I’m told constantly I don’t drink enough but it seems quite obvious if you’re already half full of fluid you don’t want to put more in there. It seems that’s what I should do.

 

Do you drink a certain amount of fluid every day?

 

Not really. I take cranberry juice, which I think the lady [nurse] in the hospital recommended. Yeah, I drink that every morning when I first get up, not just to swallow the pills after taking them. I’m not a cranberry juice fanatic. I think it’s over-rated but anyway it seems to work.

 

You have one glass of cranberry juice or

 

Yeah. I think probably I take the odd slug, or I always have a glass in the kitchen there in passing, I’ll have a little drop of that.

 

Do you drink water as well or lemon juice?

 

Not enough, I rarely drink water. I should do more often.

 

Some people have said lemon, fresh lemon juice squeezed into water helps.

 

It tastes quite nice. Yes, lemon in water does help. I drink a lot of lemonade as well which I think, I can’t see does any good really. But according to one of my sons it’s bad for my teeth. My teeth are in a terrible state. 

Peter Z would like a catheter that has a valve on his stomach to let out urine.

If men could do their own, I think there is a female catheter, but I’m not sure how men would do it to be honest. But I would, I think if it was possible to have a little valve, if you just screwed it in or something here, I’m sure it would be possible when they first operate to put in a valve on your tummy. And that would be great.

 

And then that would…

 

Chained up like a hose pipe. It would be rather nice and you could change your own, just make sure everything is sort of hygienic and keep it clean. I mean I’m not sure it’s possible. I’m not in the design area, wish I were ‘cos I really think it could be a brilliant idea if I knew someone that wanted to develop that a bit, a little valve on there.

 

A little valve and then you could just empty?

 

You could change it yourself, that’s the thing. Yes. I’m surprised that, to be honest they haven’t reached that stage because medicine seems to be years before in everything else in this country and yet that particular one seems to have been missed.