John Y

Age at interview: 77

Brief Outline: John has spastic tetraparesis of unknown origin. Just over a year ago he developed urinary problems. He had a urethral catheter for a few days and then decided to have a suprapubic catheter, which he likes. He has had very few problems with this catheter.

Background: John is a retired medical practitioner. He is married and has three children. Ethnic background/nationality: White British.

More about me...

John has spastic tetraparesis of unknown origin. People with this condition have progressive muscle stiffness (spasticity) and an abnormal weakness in all four limbs. They often have bladder problems. John has had to use a wheelchair for the past four or five years and also has limited use of his arms.

 

About 2 years ago, at the end of 2009, John found that he was straining to pass urine. He also had urgency of micturition (he had to find a toilet very quickly) so he started using a Conveen (a device that looks a bit like a condom and which collects urine), which he found helpful. John did not know if his bladder problems were due to his neurological condition or due to an enlarged prostate. 

 

Then about 13 months ago, in late 2010 John found that he could not empty his bladder completely. He tried to solve the situation by drinking more fluids, but his bladder became painful and distended. He had to call the emergency doctor. John tried to pass urine again three hours later, but again couldn’t manage it so a nurse came to the house to pass a catheter. The urethral catheter was left in place. The nurse didn’t explain how the catheter could be fixed to the leg so it was dangling and pulling and John found it most uncomfortable. 

 

A few days later John went to see an urologist who thought that John’s problems were due to bladder neck spasm. He suggested that John should have a suprapubic catheter. That day another doctor inserted a silicone suprapubic catheter. It was left to drain continuously. At that stage John was told about the flip flow valve, but its use in stretching the bladder at regular intervals was not explained to him. No investigations were carried out. 

 

Now John wishes that he had tried a flip flow valve because he fears that his bladder is now very small and that perhaps it has some scar tissue. As soon as he has about 70 ml in his bladder it feels uncomfortable. He wishes he had had been told about the significance of the valve and that he had had the opportunity to turn off the valve once a day so that his bladder could stretch regularly. 

 

For about 12 months John did not have any urinary problems and he was very pleased with his catheter. Having a catheter made him feel more relaxed. However, during the past month he has had one partially blocked catheter, which had to be changed by the district nurse, and he fears he may have had a mild urinary infection at the moment but is not sure. 

 

John’s first two suprapubic catheters, which were inserted by hospital staff in the out-patient department, were made of silicone. Since then size 14 catheters have been inserted by the district nurse and are made of latex. They are changed about once every 8-10 weeks. John changes his leg bag once a week. He has a new night bag each night. 

 

John thinks that all the treatment that he has had with the NHS has been excellent. However, he would like to have had more information about catheters and their care.  

 

 

 

John Y wasn't sure whether a prostate or neurological problem was causing his bladder trouble....

I’m 77 and I retired just before my 63rd birthday because I was having neurological problems, largely to do with my legs. At that time I didn’t have any urinary problems at all. But the disease I’ve got is progressive and my arms are affected. My legs got more and more bad, weak, till I became wheelchair bound about four, five years ago. And my arms are beginning to be affected now too. 

 

About two years ago I was aware that I was having to strain to pass water and I did try and mention to my GP but he didn’t take it seriously at the time. I said, “Perhaps I’ve got retention with overflow.” He pushed me in the tummy and said, “No, you haven’t.” I think he may have missed a chance at that point to spot that something was going on. 

 

Anyway, I used to control my, I used to have urgency micturition [urination] which was a great problem so I started wearing a Conveen [sheath] during the day and a leg bag. This meant that it didn’t matter where I was if I had to pee. I could just pee and it went into my leg bag……

 

Is a bladder problem a normal complication with your neurological condition? 

 

Not that I’ve read a lot about, it’s not unknown. But it’s not necessarily a common thing. But any time we’ve got urgency of micturition, it might well have a bladder spasm. I thought that would be conflicting, that you either had spasm or not, but know your bladder wall and your bladder sphincter can both go into spasm. Yes, it does occur.

 

But you’re not 100% sure whether it’s the neurological condition you’ve got causing the bladder problem, or something else?

 

Or a prostate problem. No, I’m not sure.

 

John Y was wheelchair bound and unable to rush to the toilet so a condom catheter helped. When he...

I’m 77 and I retired just before my 63rd birthday because I was having neurological problems, largely to do with my legs. At that time I didn’t have any urinary problems at all. But the disease I’ve got is progressive and my arms are affected. My legs got more and more bad, weak, till I became wheelchair bound about four, five years ago. And my arms are beginning to be affected now too.

 

About two years ago I was aware that I was having to strain to pass water. I did try and mention it to my GP but he didn’t take it seriously at the time. And I said, “Perhaps I’ve got retention with overflow.” And he pushed me in the tummy and said, “No, you haven’t.” And I think he may have missed a chance at that point to spot that something was going on.

 

Anyway I used to control my, I used to have urgency micturition [urination] which was a great problem. So I started wearing a Conveen during the day and a leg bag. And this meant that it didn’t matter where I was. If I had to pee, I could just pee and it went into my leg bag.

 

Could you talk about that in a bit more detail, the advantages and disadvantages of having that?

 

Well if I had been able bodied I could probably have just run to the loo. But because I was wheelchair bound, there was no way I could deal with it. And when I got about 200, 250 in my bladder, the reflex would set and I had to pee. And that was why I wore a Conveen.

 

If I was going out for an evening, I used to fluid restrict myself a bit so that I knew the bag wouldn’t be a problem. And this particular night, about thirteen months ago, I did fluid restrict before I went out.

 

When I came back my wife said, “Oh you haven’t passed much urine in this bag, you’d better drink some water.” And I said, “Well actually I think I’ve got some in my bladder and I haven’t been able to pass it.”

 

So I was aware then that there was a problem. And I did something a bit stupid. I tried to drink myself out of it. I thought well I’ll drink lots and see whether or not I can pass any urine and I didn’t. I got progressively more and more distended and then I did manage to pass some, I passed about 900ml.

 

But by the time the emergency doctor came, even despite that he said I’d probably got another six or seven hundred still in my bladder. And he initially said, “But as you’ve passed 900 shall we just wait a couple of hours and see if you can pass some more?”

 

This is your GP?

 

No, this was the emergency doctor. He was a GP but it was an emergency thing. And I think that was a mistake really. I think I should have had a catheter in at that point.

 

But anyway three hours later I phoned him up and said, “Can you come and do it?” And he said well he was busy with something but he’d got a nurse by his side who was experienced and he’d send her.

 

She came and she put a urethral catheter in, and I had that in for a couple of days. I consulted with the GP and I said I’d like to be referred to an old friend, who was a urologist I’d known for years. I went to see him and he was very concerned about how much I’d distended my bladder because he said, we reckoned I’d had more than 2000 in it at one stage.

 

This is a urologist?

 

A urologist. And he said, “Oh I don’t think it will recover at all. I will investigate you if you want but I think, with you being in a wheelchair, the simplest thing to do is

John Y had a urethral catheter for a few days. He said a suprapubic was more comfortable because...

So first of all you had the condom catheter for a bit?

 

Well yes, it’s not a catheter that, it’s a

 

Bag to collect urine, yes.

 

It’s a Conveen, it’s called Conveen.

 

Then you’d had a urethral catheter

 

For two or three days.

 

And how did you find having that?

 

Oh most unpleasant. That particular occasion, the person who came to do it didn’t give me any notion about how to fix it. It was just dangling and pulling and I had, it’s not something I’d want to live with at all. But I think I was rather poorly advised at that moment. She should have said, “This is how you handle a urethral catheter. This is how you should fix it so that it doesn’t pull.” And I didn’t get any of those. And though I do notice on the nursing chart she said she’d explained it all, but she hadn’t.

 

Anyway it was a great relief to get a suprapubic, which was so much more comfortable.

 

To go back to the urethral one. Was that just fixed to a leg bag?

 

Well yes, but now let me think how she did it initially. Dear God, I don’t remember. Yes, it was, but it wasn’t supported in any way. It was only for two or three days. All I remember, it was dangling and pulling.

 

Not comfortable at all.

 

Not comfortable at all.

 

How long ago was that?

 

Thirteen months.

 

And then you had an appointment to see the

 

Urologist. And he took a thorough history and examined my prostate and said it wasn’t very big really. And I said, “Well is it, you don’t have to have a big prostate, it just has to be big in the wrong place.” And he said, “Well do you have to strain when you pass water?” And I said, “I usually find, if I strain, I can get something out.” And he said, “That sounds more like bladder neck spasm than it does prostate.”

 

But he said, “I don’t think it’ll recover. I think in your situation you might just as well go for it. But I will if you want me to.” Well it was clear in his mind that the easiest thing was just to go for the suprapubic catheter. 

John Y has had no UTIs since having an indwelling catheter, though he did with a condom catheter....

You say that, up until now, you don’t think you’ve ever had any bladder infections? 

 

I haven’t had a moments problem. I’m not even sure now that I’ve got one. And I didn’t send a specimen off today, but it’s just a little smelly and it’s not that, it isn’t the sort of clear urine that looks as though you could swim in, you know. You wouldn’t want to shampoo your hair with it, it’s just a bit cloudy. And who knows, I’ve just increased my fluids and waited events. I’m perfectly well. I haven’t had a fever or anything. I’ve just been aware that it’s not like champagne anymore.

 

……Although the urine’s a little bit cloudy, my wife says she can’t smell it, but I think it’s a bit smelly. Because I’ve been alright in myself, I’ve tended just to drink more and see what happens. 

 

If you wanted it tested, you just take a specimen down to the GP’s surgery would you? 

 

Yes. I’ve got the pots here. In fact I thought we were going to do that this morning, and my wife said, “Oh I think it’s a bit better today. Let’s leave it.”…… 

 

So you’ve never had to take any antibiotics so far for your urinary problems? 

 

None at all, no. Nothing at all. Well I did, I know in my Conveen time, I had a couple of times when I needed it. But it always responded very quickly to antibiotics.  

John Y thought his hands would be too weak to open a valve so opted for free drainage. He'd now...

I was told about the ability to have a flip-flow valve, but I didn’t understand that you could have that still connected to a leg bag. And the thought, because my hands are weak, the thought of having to undo my flies and do this, was too daunting. And I opted just to let it drain. 

 

Now, in retrospect, I know now when it blocks as soon as I’ve got 70ml in my bladder, it is uncomfortable and painful, so I expect I’ve got a small fibrotic bladder now. And I’ve been wondering whether to try the valve occasionally. 

 

Because I’ve discovered since, you can have a valve and connected to a leg bag which I hadn’t realised. I thought you just had a valve or a leg bag. So that wasn’t explained to me properly and it wasn’t explained to me either that it might be a good thing to site the, distend the bladder every now. And again and I’d been wondering whether to put a valve in now. I’ve looked at them I think you could do it through your trousers…..

 

…..Now I’ve got a thing round my thigh which we often refer to as a cicatrix but it’s actually just a little flexible elastic thing. And I use a sleeve, and I’ve never actually used the valve but I had thought, it, that wasn’t explained to me properly. And I had thought it meant I would have to empty it every so often. But what I wish now is I’d had the valve and I’d just every day turned it off for an hour or two just to keep the bladder distending slightly. 

 

John Y showers every other day with his wife's help. They carefully avoid touching the inside of...

I used to have a shower every day but I now shower alternate days because it’s such an effort for my wife to do it. And once a week we change the bag. And that’s really the only routine thing we do. 

 

And we’ve got that off fairly smart and we lift it [the catheter] up so as the join is the highest point between the catheter and the leg bag, and pull it, it’s quite hard. And I hold the catheter and we are both very careful not to touch anything so that the inside of the catheter is kept sterile and the new bag is kept in. 

 

So really that’s the only thing. And the only other thing we do regularly is change the sleeve that holds the bag if I’m going to have a shower because it [the water] tends to make it go a little bit floppy and not so effective. 

 

So we keep one for showering and put a dry one on afterwards. So once changed, once a week changing the leg bag. 

 

And after every shower do you put a new sleeve? 

 

No, no we go back, we change the sleeve whenever it needs to be. No, we can make a sleeve last three or four weeks, but not if we put it in the shower so we just keep a separate one for the shower. 

 

I see, yes. 

 

And so once a week changing the leg bag, and eight to ten weeks changing the catheter. 

 

John Y drinks water, cranberry juice, tea, coffee and some wine in the evening. He's had...

How much do you drink? You say you increase your fluids. How much do you try to drink every day? 

 

Well I have 500ml of water before I get out of bed. I then have some cranberry juice and a cup of tea. And then I have coffee at lunch time and afternoon tea, and half a bottle of wine in the evening. And then I drink perhaps 5 to 700 of water just before I go to sleep. So it isn’t quite evenly spaced, but I suppose I’m taking the best part of three litres. 

 

And you said you take some cranberry juice. Did somebody suggest that? 

 

Oh yes it was just, look on the net and you can’t make up your mind. One says it’s a terrible idea to take it, and another says it’s a good idea. Yes, my urologist said “Oh two glasses of cranberry juice a day. It stops the e-coli sticking.” But when you read, other people they say, “Load of hooey, it alters the PH in the wrong direction.” And someone else says it’s altering it in the right direction. So I just don’t know. There’s conflicting information.

 

John Y orders his catheter equipment over the phone and usually gets it the next day.

Where do you get all these supplies from? The bags etc. 

 

I phone up Charter Healthcare, which is a firm known as Coloplast, or used to be, and I just say could I have this, that and the other and they usually arrive within 24 hours. 

 

Oh that’s good. 

 

And then they send the bill to the GP. 

 

Oh that’s even better. So do you have to have a prescription from the GP or…? 

 

No, I just phone up, I could, I just dial their number and I say oh it’s John from wherever it is and, “What can we do for you?” And I say I’d like 10 leg bags please and I’d like four of the sleeves or I’ll have two packs of so on, and I’ll have two packs of thirty of the night bags. And they send me 60 of those. And it just happens just like 

that. 

 

Oh that’s good. So no delays. 

 

No delays at all.