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Charles

Age at interview: 57
Brief Outline: In 1986 Charles was diagnosed with multiple sclerosis (MS). In 2005 he found he had some urinary incontinence. He managed this easily with intermittent self catheterisation, but due to brachial neuritis, was unable to continue. Now he has a suprapubic catheter.
Background: Charles was a computer engineer before he retired. He is married. Ethnic background/nationality: White British.

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Charles was diagnosed with multiple sclerosis (MS) in 1986. From about 1996 he had problems with his bladder, finding it hard to control urination. Initially his doctor gave him oxybutynin and Desmotabs®. Then in 2005 Charles started intermittent self catheterisation, which he did about three times a day, and which he found very helpful and quite easy.

Then in 2009 Charles developed brachial neuritis, which meant that he had poor dexterity and which made it difficult for him to pass the catheter. One day he damaged his urethra and had to go into hospital. There he tried a Conveen®, a condom (sheath) catheter, but did not find that very satisfactory. He had a few "accidents" with urine in his bed and at that point his doctor suggested a suprapubic catheter.

Charles now has a suprapubic catheter, with a leg bag, which he changes once a week. He has a flip flow valve, which he says makes life easier because he can shower without the bag. Using the flip flow also means that his bladder has to expand and contract on a regular basis. His consultant recently suggested that he should change his bag twice a week and the valve once every two weeks. The suprapubic catheter is changed every 12 weeks, but his consultant has recently suggested that it should be changed more often.

Charles has never had a blocked catheter, but he sometimes has urinary infections. He manages these by drinking about four litres of water a day. He sometimes takes the antibiotic called trimethoprim, especially when he has his catheter changed. He has tried another antibiotic called nitrofurantoin, but he has had side effects after taking this drug and once had to be hospitalised with breathing difficulties. Since then he has also taken flucloxacillin, which cleared up the infection but which gave him diarrhoea.

Charles is glad to have a catheter because it has given him the freedom to go out with his wife. However, he understands that having a catheter may lead to problems and might even shorten his life, and he would like to have more follow-up care from a specialist on a regular basis. In December 2011 he saw an urologist who ordered an ultrasound scan of his bladder and kidney area, to make sure that there was no back flow of urine.

In January 2012 Charles also had a cystoscopy under general anaesthetic, to make sure his bladder was healthy. The urologist also cleaned out his bladder. At the same time the urologist did a "re-bore" of Charles' urethra, to make it wider. Charles plans to try to pass urine via his urethra so that one day, if technology makes it possible, he can live without his suprapubic catheter.

Over the years Charles thinks that he has had good medical treatment (some privately), but he has not received enough information. He has had to find most of the information about his catheter and care of his catheter from the internet. He also feels that there should be someone responsible for his on-going care, and that health professionals should spend more time on chronic conditions, rather than waiting for acute problems to arise.

 

Charles had problems with the condom catheter coming off and leaking. He tried it for 2 or 3...

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They also tried me on sheath catheters, on basically a condom drain rather than using a bottle.
 
Can you talk about that for a bit?
 
Well, the sheath catheters are a good idea but I think you need, to be blunt, you need the right penis for it.
 
The right?
 
The right penis for it. I think you actually need to be, you can’t really have a foreskin with that sort of thing.
 
Does it get sore?
 
No, it’s not that. It’s just that if you put it on, then the foreskin moves around a bit and it comes off. And it wrinkles and it doesn’t stick very well. So you actually get, the problem is it will crinkle up and leak. And so it, for me, wasn’t a success.
 
For other people I believe it worked okay. But I tried it for a good two, three weeks. But I should think in that period I probably had, in the bed, four accidents. You know, especially at night.
 
Then it was decided that, I think, to put me forward that I should have a suprapubic catheter.
 
Was that because sometimes you were leaking when you weren’t using the bottle and you couldn’t control the urine flow?
 
I think, yes, I was on inco sheets, which were the sheets on the bed all the time, just in case. I mean I was still on the oxybutynin and the Desmotabs [medications] in hospital and I’d got beyond that. You know, I had a problem.
 

So I needed a collection method of urine, otherwise I would be wearing nappies or something like that all the time. 

 

Charles said ISC is nothing to be frightened of. It’s important to have the right size catheter....

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For males, of course, the catheter is actually quite long. It’s probably about 14 in-, 16 inches long. It sounds, because the urethra actually goes an awful long way. The insertion by the, you do need to be, I won’t say dextrous, but you need to have the use of both hands.
 
And so basically you’re getting yourself in the correct position and gradually sliding the catheter in through the tip of the penis. It goes in fairly okay providing you get the right size. So it’s actually vital that you get the right size catheter diameter.
 
Is that trial and error, the right size?
 
Well, you get sorted out with one when you first start off. But obviously, as you use them, your urethra actually gets bigger. So you might need a bigger one. Also the smaller they are, the longer it takes to actually empty the bladder. So, anyway I mean.
 
If it’s too small, you’d leak around it, might you?
 
You’d probably leak around it. The main issue is when you hit the sphincter where you enter the bladder. And actually sometimes getting through that can actually be a problem, because you’re so used to holding yourself back. Actually getting through that can be, you can shove too hard. You need to be gentle, maybe cough a bit and just probe a bit.
 
The catheters I had were the ones which were already in a saline solution, so I didn’t need to muck about with putting water in them or anything like that. Basically I opened the packet and took them out and inserted them.
 
However, it’s very important to put, use hand gel on your hands and gel on your hands to make sure you are as clean as possible when you’re inserting the things.
 
So you don’t have to wear sterile gloves?
 
No, no. It’s basically keep your hands clean, give them a wash, put a bit of hand gel on and away you go. Much as a nurse would do when treating a patient. And then afterwards, wash your hands.
 

So once you get in the flow it’s not difficult and one shouldn’t be frightened of it. It’s not, I know people will be frightened because it’s inserting foreign bodies into probably a very sensitive place. But actually you don’t feel a lot. Because the catheters are self-lubricated, so you don’t feel a lot.  

 

Charles, who has multiple sclerosis, was worried about the risks of infections and kidney failure...

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2010, yes, I started getting infections, UTIs, urinary tract infections, mainly at catheter change time. But in 2011, I actually started, I had a series of UTIs which took probably three months to sort out and included a hospitalisation because of a reaction to one of the drugs which I was given. 
 
Anyway subsequent to that, after the end of that, I actually went to see a consultant urologist to talk about indwelling catheters, suprapubic catheters, and actually was given some information which sort of indicated that it’s a problem, right. I was actually given some things to read which indicated it was an indwelling, the suprapubic catheters were technology which hadn’t changed in fifty, sixty years, would have an impact on my life expectancy, especially regarding urinary tract infections and also kidney, renal failure in general because of a backflow to the kidneys. 

 

 

Charles has antibiotics at home in case of a UTI. He had a recurring infection after a catheter...

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Do you find that that particular antibiotic suits you best?
 
Well, that’s the first one, trimethoprim, right. And that’s the one he [GP] allows me to keep at home. However increasingly, certainly within the last eighteen months, trimethoprim has become not the antibiotic which is suitable for some of the infections. I start, normally if I feel like I’ve got a UTI, I take trimethoprim, provide a urine sample as soon as possible, they send it away. It gets tested, and it comes back and says, “Well, you need to take this antibiotic.” 
 
On a lot of occasions, probably 50 per cent of the occasions they, in the last year the tests have come back and said, “You need to take something else.” And specifically I’ve been told to take nitrofurantoin. 
 
Unfortunately this, in the middle of 2011, I got an infection after a catheter change. Very important. It wasn’t a particularly successful catheter change and also my catheter type had been changed. And the catheter type which I currently had and I had before that change was, the pipe didn’t kink very easily. Whereas this catheter change or this particular catheter seemed to have a wider bore in it, so the urine flowed quicker, but would tend to kink. So you needed to be very careful. 
 
So, anyway, it was obvious that there was something wrong because I seemed to get a recurrent infection after that catheter change. And I actually took nitrofurantoin over a period of probably three, four weeks and at that point I think I’d got sensitised to it. And then one Friday night I was hospitalised because I had breathing difficulties, which is a side effect of that particular drug. 
 
Anyway I was put back in the hospital and then put on to flucloxacillin, I think that’s what it’s called, and that’s a sledgehammer, you know. And of course that has side effects.

 

 

Charles has never had a blocked catheter and puts this down to drinking lots of fluid. He...

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Have you ever had a blocked catheter?
 
Never.
 
Good.
 
Specifically because I drink so much. I wash it through. I will talk about my recent situation in a minute because there’s a story behind it. But, no, in the past I haven’t had a blocked catheter. Yes, and it’s great because I haven’t had to do one of the flush-outs [bladder washouts] or anything like that. I think that’s, and it’s totally down to drinking. 
 
But the friend I was telling you about who died in the last year who had MS didn’t drink enough. He regularly had blocked catheters and would have, you know, blue flashing light jobs to hospital because he needed to be unblocked. So, water, drink lots of water.

 

 

Having a suprapubic catheter fitted was ‘very simple’. Charles decided early on to have a flip...

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The actual [suprapubic catheter] operation is done at the bedside. And I’m, you know, a bit flip about it. This bloke comes along with a local anaesthetic and a Black & Decker and drills in and chucks the, puts the tube in and away you go. 
 
I mean, again it’s a, the operation is, well, you don’t see it to be quite honest. And you don’t feel it. And I never felt any pain regarding it. So you had an idea something was going on. I mean it wasn’t noisy or anything, so it wasn’t upsetting from that point of view. Obviously you’re a bit nervous about it because, you know, something’s being shoved in your body, which is unusual. I mean it’s not like putting an earring in or something like that. 
 
But, you know, as I said, I’d made up my mind that this is the way I wanted to go. So maybe was prepared for the worst. And the worst was nowhere near what actually happened. I mean it was very, very simple. The catheter was put in, bags were put on. 
 
I was given basically a list from a supplier of what was needed and I decided to go for, very quickly actually, for a flip flow because that actually gives you the benefit of being able to disconnect leg bags or night bags with ease. It’s like isolating part of your central heating system. I mean it was a very good thing to do.
 
Has it a valve you can close and open?
 
Oh, yes, a little valve. So you have the catheter, then this thing plugs in, which is about, it plugs into the end of the catheter. And you then plug your leg bag into it. I actually opted for a large-volume leg bag, which is three-quarters of a litre. Normally it’s only half a litre. But I did that because I decided very early on to take their advice and drink lots.

 

 

Charles’ wife cleans his catheter site at least once a day with saline solution and a single use...

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Could you talk about cleaning the catheter site?
 
Basically, although nurses have said, “Well, just wash it”, my wife cleans it at least once a day with a saline solution and a single-use cloth.
 
Just round the site?
 
Just round the site. So basically it keeps it clean. Any deposits on the pipe or round there are all taken off. And it’s kept clean, you know, at least once a day. 
 
But I, obviously if I shower every day as well, so that I try to keep the site clean from that point of view. So that’s, you know, it’s an infection point, so keeping that clean is very important. 
 
As the consultant who I’ve recently seen says, “It’s not necessary to use sterile stuff” although, you know, it’s convenient because the saline solution comes in these little tubes which is very convenient to use. “But it’s important to keep it clean.” Get rid of, you know, detritus of, you know, because your body will exude stuff, whatever it’s called, I’m not quite sure.

 

 
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Charles drinks 3 to 4 litres a day. He believes that this, and cleaning his catheter site, has ...

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I actually opted for a large-volume leg bag, which is three-quarters of a litre. Normally it’s only half a litre. But I did that because I decided very early on to take their advice and drink lots. And I think that’s one of the things which so many people don’t do, is drink lots.
 
Drink, I probably drink three to four litres of fluid a day, of which probably at least half of that is water. So that’s six glasses, six large glasses of water and then pints of tea and fruit juice and all that sort of stuff, you know. So that’s the one thing which I think has, in inverted commas, “saved me”. And obviously the cleaning, the cleaning of the catheter site.
 
Do you do anything else when you get an infection? Do you drink, try to drink more?
 
Oh, yes, well, your normal stuff, you know. You try and flush out as much as possible. Drink, drink, you know, I mean this is where you’re shoving glasses of water down you just in one go, you know, and really probably even drinking more like five or six litres a day. Something which you would do in the tropics rather, or in the desert, rather than here. But I think it’s probably one, been my one saviour, to be quite honest.
 
Drinking?
 
Drinking lots and lots of, I mean I wish it was, you know, Chateauneuf du Pape or, you know, because I like my wine. I mean none of this stops me from drinking alcohol, by the way. I can still have a glass of wine or two. I can, in fact it’s quite beneficial because I normally match, I normally drink, when I drink a glass of wine I drink twice as much water with it. So no more hangovers, I tell you what, no more hangovers because you’re drinking so much water.
 
Have you ever had a blocked catheter?
 
Never.
 
Good.
 

Specifically because I drink so much. I wash it through. 

 

Charles’s urologist wanted him to have his suprapubic catheter changed more often than every...

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So can we go back to how often you have your suprapubic catheter changed?
 
Well, that is a contention now. Originally it was once every three months. They used to come in once every twelve weeks to change it. So four times a year.
 
In conversation with my urologist just in the last couple of months, it seems that he’s suggesting it should be changed more often. He’s not actually given us a date, but maybe once every two months or even six weeks.
 
There is an issue regarding indwelling catheters. And the way they work is that the catheter is put through the hole in your tummy into your bladder and a little balloon is blown up to keep the catheter in place. However, since it sits in your bladder and your bladder basically contains a solution of solids, those solids actually deposit on the balloon and the catheter. And because there are actually solid particles in your bladder, they are an ideal hiding ground for bugs, bacteria. And that’s where so many of the bladder infections come from. Because basically those solids which have been deposited round your catheter actually cause the problem.
 
That’s the reason for changing it quite often?
 
And what he’s saying is that it’s not the insertion of the catheter which is the problem, it’s the removal of the catheter. Because if you think about it, the balloon gets deflated. All that deposit breaks off and goes down into the bottom of the bladder. And it’s extra breeding ground for bacteria.
 

So he’s suggesting that the catheter be changed more often. And we have talked about it and I need to, I’m probably going to email him in the next, well, next few days to actually to say, “Well, how often?”, you know. “Tell my GP that the district nurse needs to do it, every, you know, six weeks, two months, rather than every three months.” 

 

Charles described how the district nurse changed his suprapubic catheter. It was usually ‘a very...

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Does the district nurse come here to do it [change the catheter]?
 
Yes, she comes here to do it and it’s a very smooth operation. It takes, I don’t know, the whole process takes 5, 10 minutes, if that. One of the things it’s important to do is have a bladder which is partly filled, so the catheter goes in to liquid, you know, a bladder which has got some space in it. 
 
Also, because of the possibility of infection, it might be a good idea to start taking antibiotics a day before and then for a couple of days after because of disturbing things in the bladder.
 
It’s probably a good idea to do a test before the catheter is changed to make sure there are not too many bugs around, because you know, as I said, when you change the catheter, extracting the catheter may be a problem.
 
By a test, do you mean send it off to the laboratory, or just a dip stick?
 
No, no, no, just, just a dip test.

 

 

Charles orders his catheter equipment on the internet. He was told very little at the hospital...

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I get them [catheter supplies] from a company which has been delivering me, first off they delivered my IC catheters. So I’ve been dealing with them, and they more or less do next business day delivery. 
 
So if I ordered it, I order it on the Internet or you can phone them up, “Oh, I need some of these.” They have, now I’m very fortunate. Because of my condition I don’t pay. I have a medical exemption certificate for all my medication and medical equipment, so basically I don’t have to pay for any of this. And I have, I probably get deliveries once a month of leg bags, night bags, all the other bits and pieces as well, you know. 
 
They also supply wipes. They’ll supply disposal bags for, because every day there’s a dead night bag, and they go into a plastic bag which you, we can actually get rid of in the rubbish. So, you know, they’re very useful and they have actually been quite helpful. 
 
And can people get all that information from the hospital when you first go there? 
 
Unfortunately not. The hospital information is, this is why one of the problems, I think, is that the hospital information is lacking in the sense that they believe that this sort of care, this sort of ongoing information should be the province of the GP. And they don’t, the hospital will deal with acute situations but not ongoing situations. 
 
For instance, I don’t see as a matter of course either my neurologist any more, used to, and I don’t see my, sort of my occupational therapy people on a regular basis, I only ever see them on an acute basis. So there’s an assumption that new information will be supplied to you by the GP. 

 

 

If the Foley catheter has been used for over 50 years, Charles said it can’t be a bad design....

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I mean you can’t design something and expect it to, design something and it lasts for fifty years and say, “It’s a bad design.” Because I think someone might have, so it’s a good design but there are probably better designs considering the materials which you’ve got, if you think about it. If you think about materials used in, you may have heard of graphene, you know, carbon fibre, carbon tubes, that sort of stuff. Maybe there’s something in that. I mean we don’t know. 
 
You need something ultra flexible, ultra strong, but smooth, it’s not going to damage. Inert, very important for it to be inert, because your body’s going to try to reject it because it’s an intrusion. 
 
Maybe there’s an alternative for going through, maybe even I would say some sort of mechanical help for the sphincter on the bladder, so you can pee normally. So some sort of help, say, “I need to empty the bladder” something there, open it, shut it, whatever, you know, some sort of, in inverted commas, “clamp” or something. Maybe there’s something in that, I don’t know.

 

 

Charles described a ‘serious lack of information’. He didn’t know that it was a good idea to have...

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There seemed to be a serious lack of information. And this is when I was given information regarding you [Healthtalkonline], and I felt that it was important that other people hear about my experiences of it. Because I feel the whole way through, from the start of my MS, the various pills and potions which I was given throughout the last twenty-five years, and also when the catheter went in, there was very little giving of information. 
 
For instance, the only information I was given when I was given the catheter was, “Drink lots.” That’s all. “Keep it clean.” But other than that there was nothing. You know, what I would expect, whether it would ever come out, who would be monitoring me. 
 
For instance, one thing I was told by my consultant this year was that you should have a regular scan of your bladder and your kidneys and all the rest of it to check there is no backflow. But no one told me I needed that and no one has come back to me from the hospital to say, “That’s what we need to do.” 
So I feel that it’s important that other people know this is what they need to do because no one else seems to be responsible for giving you that information.

 

 

Taking responsibility to look after the catheter is important, including cleanliness and drinking...

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Make damn sure you know what it’s there for, that all the things are in place, like you know what you have to do, cleanliness, liquid intake, all that sort of stuff. Look at what’s important from a point of view of maintaining that catheter. So, how often it’s changed, your doctor’s aware that you’ve got it in, doing things like taking antibiotics when you have a catheter change, all those sorts of things. They’re all nitty-gritty little things which will help you in the end. 
 
Make damn sure that you’re on top of your own situation, so you learn about when, your own body when you’ve, when you think you’ve got a, when you know you’ve got a UTI and that sort of stuff. You know, so, and, to be quite honest, demanding that people take notice of the fact that you’re in a medical state where you are open to the things going wrong far more than a normal human being. And, to be quite honest, if you don’t take responsibility now, at the moment, no one else is. And I suspect that will be the case for a while. So, but don’t be frightened, because it’s quite simple. And actually having the catheter in place makes it much easier to live your life normally.

 

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