Iain

Age at interview: 35

Brief Outline: Iain was diagnosed with Multiple Sclerosis (MS) in 1994 at the age of 18. He used intermittent catheterisation for about 5 years and was then fitted with a urethral catheter, which he had for about 8 months. He has used a suprapubic catheter since 2009.

Background: Iain is a married IT Officer. He works for the local council. Ethnic background/nationality: White British.

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Iain was diagnosed with multiple sclerosis (MS) in 1994 at the age of 18. MS is a disease affecting the central nervous system (the brain and spinal cord). Iain’s first symptoms were urinary problems and started in 1993. At that time he had incontinence problems overnight. Over time, however, he started having incontinence problems during the day too.

 

At first, Iain used intermittent self catheterisation. He used a catheter four or five times a day, using his watch to know when to catheterise. He had little sensation in his bladder so couldn’t tell if it was getting full or not. Iain used intermittent catheterisation for about five years. As his MS progressed, however, he had reduced sensation in his fingertips, which made intermittent catheterisation more difficult.

 

When Iain had a major relapse, getting to the bathroom became difficult. He was fitted with a urethral catheter, which he had for about 8 months. During this time, he also took medication for bladder spasms.

 

Iain said that, from the age of 25 to 28, he had bladder retention and was retaining urine. Catheterisation helped solve this problem. From about 28 to 30, as his MS progressed, he found it hard to walk. He used a walking stick to start with and, later, crutches. In his early 30s, he started using a wheelchair.

 

Over time, Iain’s bladder problems became progressively worse. After doing some research on the internet, Iain asked his urologist if he could have a suprapubic catheter because he wanted to continue with normal activities as much as possible, including having sex, which was much more difficult with a urethral catheter.

 

In 2009, Iain was fitted with a suprapubic catheter, which he said ‘made my life much easier to survive with and it worked very, very well for a long time.’ Iain said that having sex was much easier than with a urethral catheter and he got more infections with a urethral catheter and these would cause a relapse of his MS. On average, he now gets about one infection a year, though the same number of bladder spasms. He has his catheter changed every three months by a district nurse.  

 

Iain said that, because of his MS, he gets lots of bladder spasms and, in a few months time, planned to have BOTOX injected into the wall of his bladder to help with these. Instead of a drainage bag, which he uses at the moment, he will start using a flip flow valve.

Iain works full-time and lives with his wife. When they go on holiday he takes a spare catheter with him which, if needed, he can change himself. Iain drinks lots of fluid every day and takes cranberry capsules. He advises other catheter-users to drink lots of fluid.

Iain started ISC because he had overnight incontinence. When he had continence problems during the day too and started losing feeling in his fingertips, he changed to an indwelling catheter.

Eventually when I was then diagnosed, the answer was, “Yes, you were right, you do have MS.” I goes, “Okay, fine. Thank you.” And off I went on my way. Carried on back into work as normal, ‘cos at that point it never really affected me overly much, apart from overnight incontinence problems I had which, over time, led onto day time issues. And I used intermittent catheterisation for that, ‘cos I was having bladder retention and that’s got around that problem. No problems there, it was all fine.

 

But, over time, I got reduced sensation in my fingertips making catheterisation that way very difficult to do, so it made sense to think upon other ways of doing things. And when I saw my urologist and he suggested possibly an indwelling catheter, I said, “Okay, well, we’ll give it a try.” 

 

I said, “I’m still a very young person, I’d still like to be able to do things on a normal basis easily.” And I said, ‘cos I’d researched quite a bit through the internet other types of catheters, and I said, “Well would a suprapubic one be better?” He said, “Well, yes we can do it that way.” So we did that and that’s the way things still are.

 

Iain compares his experience of a urethral and suprapubic catheter.

The pros were, I mean it [urethral catheter] was fine in respect it was always there. It was always draining through my bag, no problems. But because of the MS symptoms I get, the bladder spasms I experience, my bladder would more or less be that empty then close around the catheter eyelets and be still choking the bladder, wrapped around it and be unable to drain. 

 

So I then would get bypassing around the urethra, around the catheter site, or around the catheter which was then, it led to the medication from my GP to try and relieve the bladder spasms I was experiencing. Which are very painful and not the most pleasant thing to undergo, and that seemed to help a lot with that. 

 

But, over time, things changed and I lost a lot of sensation to do things and bit and pieces, but it was probably the best solution for me. So I spoke to my GP and tried to be re-referred back to the hospital Urology Department and they went down the suprapubic route instead. Which just seems a better, less infection-prone way of having an intermittent or a permanent catheter in situ, because it doesn’t get, it’s easier to keep it clean, the site etcetera clean and elsewhere. I was getting repeated infections with it urethrally. 

 

Certainly a suprapubic catheter I found far preferable to the urethral in the fact that it causes much less pains probably I would say. For me it’s been the main point of view anyway. It’s much less painful because you don’t have a gigantic long tube going through your entire anatomy to get into your bladder. It’s being passed through my abdominal wall straight into my bladder. And it’s there and you don’t really know it’s there. You just get on with normal daily life. 

 

Iain self-catheterised for 5 years because he had urinary retention. Although it can feel alien at first, ISC is easy to do. He used his watch to remind him to catheterise 4 times a day.

When I went to the toilet before I went to bed, my bladder didn’t fully empty. Then overnight it was still producing urine anyway, the kidneys are always doing urine production. It does slow down but it’s still doing it. And essentially it was full and the bladder didn’t cope with it. So it simply released, causing enuresis [inability to control urination].

 

And did that, over time, get worse?

 

Yes it did, it progressively got worse and worse.

 

And how did the conversation come about with the consultant to, you used an intermittent catheter at first?

 

That’s correct, yeah. Basically I ended up getting referred to see a urologist at a local hospital and he suggested, along with the urology nurse, that I might want to look at doing this. And then I was shown what to do by the nurse. And that proved the best thing I ever did for numerous years, quite a few years. And it made my life much easier to survive with and it worked very, very well for a long time.

 

And was the problem mainly at night time then?

 

Originally it was night time, but it did progress to become a problem during the day as well.

 

So, if somebody is in this situation now or about to be in this, you know come up to this situation, and they’re wondering what does self-catheterisation involve? What is it like to have an intermittent catheter? A lot of people won’t know anything.

 

Yeah. I mean initially it’s a very alien concept and you’d go into it not having a clue what to do. There’s no information out there about it. It’s a very taboo subject. It’s not spoken about by anybody, unless you look in the right locations. Once you find the right places, it’s easy.

 

It’s a very simple thing to do. Especially for, as a male it was very easy for a man to do it, much more so than I know it is for a female to do. It’s because where it goes is very obvious, and I’ve got enough sensation internally so I know that when you’re passing a catheter you have to pass the prostate in a male anatomy and you feel it doing that. So you know you’re in the right place right away.

 

And then, as soon as it goes in, it starts passing the urine, so it’s very easy to do. And the catheters that they have now to do intermittent catheterisation are so much better than they were ten years ago. They’ve improved a lot more.

 

And on a day to day basis, what does it involve, the self-care?

 

Well I’ve got, as I say, I’ve got a suprapubic catheter.

 

Now, but at that time what did you have?

 

At the time, when I was intermittent catheterising, I would use my catheter about four or maybe five times a day. I’d just do it. I would use my watch saying I’d get to this time here; I should do my intermittent bladder now. I didn’t have too much sensation in my bladder, saying it’s getting fuller or it’s not, ‘cos I wasn’t getting the signals through due to the MS. So I looked at my watch and think, “Okay I have to go to the bathroom now.”

 

So I went away and emptied my bladder, then it would be fine for another full three or four hours. I had to go back and do it once more.

 

And how long did that take?

 

It took about five minutes. No longer than it would take to go to the bathroom normally.

 

So it doesn’t interrupt

Iain enjoys going to the cinema and concerts. He also goes away on holiday, but these activities and shopping expeditions are planned around toilet locations.

So you’ve been living your life pretty fully, going to work and you go on holidays. Are there any social activities that you don’t do?

 

No.

 

You do everything that you are interested in doing?

 

I do absolutely everything there is to do. I’ve not changed anything. I’m still doing everything I used to do when I was 18 years old that I do now. I’ve never been a person that went out drinking at night time. I’ve never been interested in that. I’ve worked in pubs and clubs when I was younger, that put me off it for life. I think that’s a case of, I don’t see the point of that. I worked in student unions, I saw too many students getting drunk so, you know, that’s not my cup of tea.

 

No. What sort of things do you enjoy doing?

 

We love going to the cinema, going to concerts and all these sorts of things. Going on vacations, on holiday to bigger cities close by, just to have a weekend away or something like that. Just go away and do that. Just fun to do.

 

When you’re going somewhere, if you’ve got bladder issues you’re always very aware of your surroundings. And more or less your shopping experience is mapped around by toilets. So if you go into that shopping centre there, it’s got toilets in A, E & C locations. So you’re kind of going around the area close to those locations. It’s very interesting, you probably live your life around the toilets ‘cos that way you know where they are. And you live your life that way and you have to, unfortunately, to adapt to cope with that. 

When travelling, Iain took spare catheters and enough supplies to change a catheter if necessary. He usually stayed in a place with easy access to healthcare.

For work, for example, if we’re going away on a training course somewhere, I’d have to think very carefully where I’m going. And, for example, I can’t really fly to somewhere else easily and go there say for a week somewhere. I’ve got to make sure I can get access to, if I need healthcare, I need to get it easily. So I tend to stay within a wee local area as much as I can. Because that way I know I’ve got easy access to healthcare if I need it. If I’ve got problems caused with the catheter, I can get at the end of the phone the number to phone and get help. 

 

It’s like when I go away on holiday soon, I’m taking the catheter, a spare catheter with me so if I have a problem I know that there’s somewhere I can change it, because I’ve got all the supplies with me to change it. Although I don’t normally change my own catheter, I know how to do it.

 

Iain practised intermittent self-catheterisation for about five years. After that he had a urethral and then a suprapubic catheter. He has hardly missed a day's work.

What did the relapses involve?

 

Mainly extreme loss of muscle strength and co-ordination and fatigue, just things like that.

 

Yes. So for an 18 year old, how did this impact on your day to day life?

 

I never missed a day off work from it as much as possible. I was just determined to be at work, probably more so and being a bit bloody minded in many ways ‘cos “I will get there, I will do that. And don’t you dare say I can’t do it ‘cos I will do it regardless.”

 

Then from probably 28 to say 30 or thereabouts, I was getting more and more problems walking about. So I was using a walking stick, then progressed onto crutches. And then from about early thirties I’ve been using a wheelchair more or less since that date to now, because my walking is, I’m good at falling down. Walking is something I can’t really do. I’m fortunate enough to still be able to weight bear, but beyond that I can’t do anything else in that respect. But I still do everything I could and have done it in the past. Yes.

 

And you’ve carried on working throughout?

 

Yes. I still work full time; it would drive me mad if I didn’t. Generally I have to occupy my mind; you know I have to do something to keep my mind busy, ‘cos I get bored quite easily.

 

Yeah. And you mentioned that you don’t work very far so it’s,

 

No.

 

How do you get to work?

 

I drive to and from work.

 

Right so you get, you drive your car?

 

Yes. 

Iain couldn't think of any negatives about living with a suprapubic catheter. He said people shouldn't feel embarrassed by incontinence.

It takes away the urgent need to get to the toilet in time, because when I got it fitted I had frequent times, maybe wet my pants and that was rather embarrassing. The catheter removed that altogether. That was just taken away, it was no longer an issue. So I would say...

 

People who might be thinking, “Oh God,” you know, “It’s embarrassing,” that kind of thing, what words of hope would you give to somebody who feels that way?

 

Oh any medical person, any medical professional you see, they saw it all before so there’s no need to be embarrassed at all by it. It’s their job. It’s what they do, day in, day out. So they’re used to seeing that sort of thing. To you, it’s embarrassing ‘cos you’re going through it the first time. But to that member of staff who deals with it, they’ve dealt with it hundreds of times, if not more. So there’s no need to be embarrassed at all.

 

Yes. And what would you say would be the main difficulties with it? You know, for somebody thinking about it, they hear all about the positive aspects, what would you say is the main difficulty with it?

 

It’s hard to actually say. I don’t, from my own situation, I can’t see any difficulty in it. I mean for me there’s no down sides, all I can see is pro’s all the way through it.

 

Well that’s good to hear too.

 

Yeah. I can see no downside to it. 

When Iain first had bladder spasms, he didn't know what they were. He had bad pain in the abdomen. He tried various medicines before his doctor solved the problem.

Over the years, at different stages, what have been the important questions for you?

 

It’s just basically things, simple things like you know, these problems I’ve got here, describe your symptoms to the doctor and getting the answer back. And I think when I got the original bladder spasms, I didn’t know what it was. I had a very painful sensation in my abdomen. I didn’t know what it was.

 

Once I’d explained that to the doctor, he said, “Oh that sounds like this.” So you should have this medication, which should maybe help that problem. So I tried about three or four different medications for that problem, and finally got the right one that fixed it. And it was fantastic. I got a new lease of life.

 

In terms of medications, what kinds of medication do you have to take on a daily basis now?

 

Well one, the primary one I take for my bladder situation is, I take one called Detrusitol®, which is one tablet a day for my bladder spasm and it works generally very well.

 

I do still get bladder spasms now and again, when that medication doesn’t seem to work any longer properly. I still always take it but if I get what’s called an intractable spasm, I have to take diazepam to break the cycle of the spasm. So I’m taking medication to stop it, it doesn’t, so I have to take diazepam just to break the sensation, break the cycle altogether and that generally fixes it altogether.

 

Yes. And any other medications during the day?

 

I take about ten or so different medications due to other symptoms of MS. Mainly primarily pain relief, I’ve a lot of chronic pain.

 

Yes. And they’ve generally been pretty good?

 

Yeah. 

Iain sometimes gets 'intractable' bladder spasms because of his multiple sclerosis. A urologist plans to inject Botox into the bladder wall.

Although I’m seeing, I saw a urologist recently and I’m getting Botox into my bladder. Because of the MS, I get a lot of bladder spasms. That’s a lot more than I should take, ‘cos for that reason alone so the Botox will hopefully stop that spasm from happening. But I’ll still keep the suprapubic catheter in place. And so, rather than using a bag, I’ll use a valve, ‘cos I can’t retain any urine currently. My bladder is too, just spasms too much to retain anything.

 

But the Botox will hopefully stop that and I’ll be able to use my bladder for its purpose of storing urine. That’s what it’s meant to do from nature, and so that will hopefully improve things a lot for me, which is what I’m looking forward to a lot. And that is basically the situation I am now.

 

This is all new treatment is it?

 

Yeah. The consultant I see, the urology consultant, doesn’t do Botox, but his colleague does. So you have to transfer from one list to another list, which is a bit long winded and cahooted, but it’s the politics of systems I suppose.

 

I’m getting it in November.

 

In November you’re getting that. What will that be? Injections?

 

It’s like, it’s done through a thing called a cystoscope. Basically, it gets put into your bladder urethrally, and it’s injected internally into the bladder. 

You might not get the most up to date information on drainage bags at the hospital. Iain recommends a website. They deliver his bags to him in discreet packaging.

The hospital doesn’t always give you the most up to date information on maybe what collection bags are available for you. And the one website I find very beneficial, they’re also, it’s a company, it’s run by Coloplast, it’s one called Charter Healthcare. They do urological supplies, you know dispensing.

 

All you do is to get a prescription from your GP and they send you the catheter bags at your house for free, and they’re fantastic. They do not just their own makes but every other make of bags out there, and they’ve also got a very small selection of what they get in the hospital, whereas in the community, and there’s such a better selection out there now than there was maybe even say ten years ago.

 

Right, what’s the website address?

 

Charterhealthcare.co.uk I think.

 

I’ll have a look.

 

But if you Google Charter Healthcare, you’ll find them straightaway. As I say, it’s run by Coloplast, they run it. But they’re on their own and they sell every urological bag there is out there. They do a lot of like stoma stuff as well I believe, they do everything, delivered to your house and it’s very discrete.

 

I get this stuff sent to my work for example, and I’m not worried about being seen by having that there, ‘cos there’s nothing of their name on it at all apart from the distribution address. It’s just a very small name on there, a distribution label. And only if you know what it is, ‘cos it’s very non-descript, and Charter Health could be anything. 

When Iain saw members of the urology team in the early 1990s, communication was poor. Now doctors talk openly to patients and 'treat you like a human being'.

The information I’ve generally had from them [health professionals] has been very good. But some information, you just don’t get any at all. You get told nothing much whatsoever. You get given something and are expected to go and get on with it without asking any questions.

 

From what I’ve seen over the years, when I originally saw the urology team at the hospital, back in the early nineties, they were very closed, not wanting to really tell patients very much, whereas now they’re much more open and forthcoming with information than what they were, which is a massive improvement. That’s what it always should’ve been like.

 

But I think it’s mainly a generational type thing, the change. The old school doctors of the day didn’t talk to patients very well indeed. But the newer doctors, they talk openly to patients and they treat you like a human being.

 

Oh that’s good.

 

You were always just a number to them, whereas now you’re a person with a name. And they’ll talk to you as an equivalent, not just a patient with a problem.

 

So you feel you’re treated as a human being when you go there now?

 

Yeah. 

Having sex with a urethral catheter made Iain sore. He found it much easier with a suprapubic catheter.

I went for initially a urethral catheter permanently. And that was alright but it wasn’t what I wanted to stay with ‘cos things were, urethral catheters are all well and good. However, being a male, to even have something as simple as sex, you couldn’t easily do so with a catheter in situ. 

 

So I then made an appointment to see my urologist consultant again at the hospital. I said, “Okay can you do this through the suprapubic method instead, then if I want to have sex I can easily, without having to try and tie something back.” So that was like, “No problems.”

 

I mean, again speaking as a male, with a urethral catheter you can have sex. But the way they describe to do it sounds very sore, and is sore to do that because you have to try and tape it [the catheter] back, which is pulling on, a lot on it.

 

And if you have a suprapubic, there’s nothing in the way of you having sex easily. So it’s an easy thing to do as you would normally. So that’s the biggest advantage I think of suprapubic over urethral, it’s that simple really. It’s nothing; it’s not something in the way of having sex if you choose to.

 

Iain thinks the Bladder and Bowel Foundation (now Bladder and Bowel Community) website is one of the best. He also recommends the site of a company supplying catheters and bags.

One of the best websites I found was probably one from the charity, we used to call them InContact, it’s now I think the Bladder and Bowel Foundation. Their website was very informative. Even looking back years ago you had, I’m trying to think of the name of the website, I honestly can’t remember. There’s quite a few websites. Google’s got some good information, but some very bad information as well. You have to be very wary of what you’re looking at. And really ask the question, ‘is that a veritable site’. You know, there’s a lot of good information there, there’s a lot of not good information too. It’s just the joys of the internet I suppose. You also have to watch and think, ask questions on what the site you’re looking at is.

 

The hospital doesn’t always give you the most up to date information on maybe what collection bags are available for you. And the one website I find very beneficial, it’s a company, it’s run by Coloplast, it’s one called Charter Healthcare. They do urological supplies, you know dispensing. All you do is to get a prescription from your GP and they send you the catheter bags at your house for free, and they’re fantastic. They do not just advertise their own makes but every other make of bags out there, and they’ve also got a very small selection of what they get in the hospital, whereas in the community, and there’s such a better selection out there now than there was maybe even say ten years ago.

 

What’s the website address?

 

Charterhealthcare.co.uk I think,

 

I’ll have a look.

 

But if you Google Charter Healthcare, you’ll find them straightaway. As I say, it’s run by Coloplast, they run it. But they’re on their own and they sell every urological bag there is out there. They do a lot of stoma stuff as well I believe, they do everything, delivered to your house and it’s very discreet. 

I get this stuff sent to my work, for example, and I’m not worried about being seen by having that there, because there’s nothing of their name on it at all apart from the distribution address. It’s just a very small name on there, a distribution label. And only you know what it is, because it’s very non-descript, and Charter Health could be anything.