The alternative to the catheter valve is a urine collection bag. This is normally worn on the leg if the patient is ambulant and able to walk around. So this is the leg bag, urine collection bag and these straps go around the calf of the leg.The problem with the urine collection bag is it fills with urine and, as it fills with urine, it becomes heavier and, as it becomes heavier, it can tend to slip down the leg. So there are various forms of device that maintain it on the leg. One is using a sleeve and they can tuck it into a sleeve, rather like a stocking.

Is a sleeve also fixed to the leg?

Yes.

Or to the clothing?

No, it’s like a sock, worn on the leg. The bag fits into the sleeve on the leg and that is an alternative to using the leg straps.
Now the advantage to, in some of these cases where the most important aspect when you have a catheter in is make sure that these junctions do not come apart. We talk about the closed urine collection system. That means there is a closed system from the bladder through the catheter into the urine collection bag. And we do try to prevent any dislocation between the catheter and the leg bag. If we can keep that closed system we reduce the risk of infection developing.
Of course at night, when people are asleep, they will need a larger capacity bag and, under those circumstances, you can use a night bag such as this one, which is a 2-3 litre bag, which can fit onto the end of the leg bag.

That’s good.

A very large capacity from the leg bag into the night bag.

Could you hold that up once more?
This, so we have the catheter, shall I just try andto demonstrate this, we have the catheter with the balloon blown up in the bladder. The catheter is attached to the leg bag through tubing. And then the leg bag can be attached to a night bag which has a much larger capacity and so there is no disturbance of having to empty the bag during the night.

There is a very large variety of bags on the market. All sorts. There are belly bags you can use in some cases, and some people prefer to have a bag on the belly than one on the leg. Some people don’t like the sloshing around of the urine in the bag which disturbs them. And you have various mechanisms that stop that sloshing in the bag. There’s a bag for everyone if you know what I mean. They can look around to find one that will suit them best.

And how often do you think bags should be thrown away?

A bag could last up to a week. As I’ve said, the most important thing is to maintain the closed urine drainage system. And that’s very important. We don’t like the catheter being disconnected from the bag any more often than necessary.

The next idea was that I would have intermittent flow on my [catheter], and so I had a flip flow valve on the end of my catheter, and even that was very difficult. And because by then I’d probably, although actually the capacity of my bladder seemingly, because I went and had a urodynamics profile done [a study that assesses how the bladder and urethra are storing and releasing urine]. And my capacity seemed to be quite good. And they actually remarked on that I had quite a good sized bladder still.

But there was this terrible fear of reflux into the kidneys and everything. And also, because I had a suprapubic catheter, if my bladder filled too much, it just emptied. And then I had this problem of incontinence. And that was going to become an absolute nightmare too. Anyway, I battled on with that process until I left hospital.

And when I left hospital it was obvious that it was never going to be really a functional and reasonable way of conducting my life, because again I was going to be so aware all the time about my bladder. Even if I wore a leg bag and just emptied the flip flow valve, from time to time it was just going to dominate my life too much. And I wanted to get back to normal.

So I decided really, and I felt an awful failure doing it, just go on free drainage. And that’s what I’ve done ever since. I just have a leg bag on, and I allow the catheter to drain continuously into the leg bag.

And at night I put it onto a larger bag which hangs on the side of the bed. And it’s really something which is, it takes a lot of coming to terms with actually. it’s a nuisance having a leg bag. it’s difficult with clothes, but the bladder and bladder dysfunction is something which is a constant problem.

I had the suprapubic in the hospital and it was draining into a leg bag. By now I was learning that I had to take responsibility for the leg bag. I was able to bend, to lean forward. I’d discovered I had enough hand function that I could empty the, push the valve on the leg bag and I could empty the leg bag. Therefore I was starting to take full responsibility for the drainage of urine.

It was very marginal. I mean my hand function is not great and I really struggled. I remember the days sitting by the toilet bowl fighting with the valves on the bag to empty it. And of course, with the NHS being the way it is, there weren’t choices on the kind of valve you could get, so there are other valves that I’ve discovered that are slightly easier, but the one I was using was quite hard.

This is the valve at the bottom of the bag?

The valve at the bottom of the bag.

At the beginning, had it [leg bag] attached to a leg strap, which was beneath my knee so that one needed to go down to the bottom of my trousers to be able to open the valve. That in itself was a complete impossibility for me because of my lack of balance. If I got down there, I could never have got back up on my own.

I was never told that there were various types of leg bag emptying valves, both the T-valve section and the flip valve. I tried the flip valve. I tried the T to start with and then later on came across the flip type. I had a lot of problems with the flip because when you pulled it up your trouser leg, it would flip open and urine would come out onto your trousers or elsewhere.

I now have taken to having this leg bag emptying device and, by cutting a hole on the inside of your trouser pocket, the pipe goes out through there and hangs in a container at the side of your chair. Now, even if you were able to operate it by hand, having it higher up like that could make life a lot easier for you emptying it instead of having it go down to your shoe level.

This is the bag. That’s the tap end but, on one side as you can see, it’s velvety. it’s sort of cotton backed, so it doesn’t affect the skin. It doesn’t make you sore or a rash or anything. And it just goes nicely there like that. That goes inside the trousers, just like that.

And how do you keep it in there?

And there’s no tube. And on the top there’s these little eyelets and I just thread through it, I thread a lace. Either a football lace or a piece of ribbon. I’ve got lots of different ones. I match them with the different colour pants I’ve got. Cos you can get these in shocking pink, purple, orange, and this is what I do. I just tie it; I’ve got a red one on today. And it’s just tied. And that’s where it is. In there. Not down my leg anywhere.

And because it holds 600 ml, that’s a fair amount which is spaced out nicely, if you’ve got a smaller bag you’ve got a big lump. But this size, and it’s so easy to empty. I’ve only got to just get the tap out, and I can empty it whether I’m sat down or on the toilet. And it just all tucks in. And I can wear quite tight jeans and shorts or even a swimsuit.

I have a bag with no tube. And I have a short, a very short catheter so I haven’t got loads of piping. It goes directly into the bag and the bag is 600ml, which is quite big enough to last me through the night as well. So I haven’t got to go linking it up. And the more you start changing your bag and linking it up to something else, the more you have a risk of introducing infection.

Is it the same bag you have overnight?

Yeah, I don’t change it. Yes, except every five days I change the bag. But, it’s day and night, it’s the same one. 600ml is quite enough. Because at night time your bladder does sleep. it’s supposed to sleep anyway. And it’s all contained in my underwear. I don’t, nothing you know, it’s all very neat. And I just put a piece of ribbon or a bootlace, anything. I have different coloured ones, different ones to go with whatever I’m wearing and I just loop it through, you know loop it through the thing or something and just tie it, tie it at the waist. it’s just my version of a g-string.

This is a fairly standard leg bag, which holds 500 millilitres and has the little tap at the bottom which you just switch on like that when you want to let the urine out of the bag.
And so one of the things I found really useful is that some hospitals stock these little stockings, so you have two straps, one around the top and one round the bottom to hold it on your leg. But they’re quite harsh actually and to make it more comfortable, to make it more comfortable you can get these stockings.

Could you hold it up, the stocking a bit higher?

You can get these stockings and basically the bag sits in the stocking and the stocking is held to your leg. And that actually makes it quite a lot more comfortable to use. I don’t know how widely available these are, but I think they’re probably quite cheap so it would make quite a difference for quite a small cost.

Where did you find the bag? Which, who supplies it, a company?

A company. And one hospital I, because my gynaecologist works in one hospital and the urologist works in another, it depends where I’m having surgery as to whether I get one of these or not. So I keep them and wash them because they’re not always readily available.

And then the top part of the bag fits onto the catheter or onto another tube first?

The top part of the bag fits straight onto the catheter tube, and sometimes they have a much longer tube here and sometimes this is a short one. I think that’s, I like the short ones the best, I have to say. I don’t like them hanging around my ankle, but they are quite easy to use.

Whereabouts do you keep it [leg bag]; do you have it strapped to the lower leg?

I have it in a sort of a net thing, how can I describe it? A sort of a knee bandage which sits on my knee on the outside of my knee. So when I lean forward I can, it’s just below the point of my knee and I can empty it over the toilet.

Oh that’s good. So you can just lift up your trouser leg,

I lift up my trousers, yes. it’s rather limiting in terms of, you know you have to wear trousers that are wide enough and stretchy enough to, I can’t wear skinny jeans anymore, which is, well I suppose I could wear skinny jeans but I’d have to push the bag down from the top. But I’ve sort of, the skinny jeans unfortunately have passed into the past because I can’t wear them really.

Do you find that the bag stays in position alright?

Yes, reasonably so. I mean I’m able to manage that myself. I can change the position and cope with it, yes. Only occasionally, you know I have to be careful going in and out, on and off the shower chair and things like that. I have to be careful that it doesn’t pull because it, my horror, I have this absolute horror of it popping out from my bladder.

At the top I use a piece of Tegaderm, the sticky stuff, I use Tegaderm and I stick the catheter to my belly. So it comes out of the suprapubic hole. I bring it up and I stick it onto my belly with a big thing of Tegaderm and that is my insurance policy to stop it getting tugged out of my bladder.

When I was in the hospital, there was always a nurse or somebody handy to empty my leg bag. When I got home, there wasn’t always somebody there. And, because I couldn’t either reach down to my leg bag, nor could I operate the leg bag which was a sliding valve type, I would have to be left in one position with my leg bag open over a jug or a receptacle where the urine could just drain into until somebody came back. That prohibited any movement around the house, to get to the phone or anything of that sort.

That stimulated me into working with an organisation called Re-map’ who, we ultimately arrived at building and, well designing and building a prototype leg bag emptying device that was powered by my chair, a battery, and which has been an absolute God-send to me.

I would say that the freedom that has given me in everyday life is at least equivalent to what my wheelchair has given me. And its successor is now being developed by an individual up north whom I have been assisting in its development, but it’s not yet to production stage.

Once I got on top of things and my leg bag device was operating so that I could open it when I wanted, that gave me a freedom to drink more. In drinking more, I had less infections, plus the additional freedom because I was in control of what was going on. Because I found that my blood pressure goes up and down a lot, and depending on my blood pressure as to what my urinary output would be. So that some mornings I needed emptying at 10 o’clock in the morning. Another day it might not want emptying until nearer to 2 o’clock. And, if I had to rely on someone coming and emptying it, what time do I ask them to come? If they always come at the same time each day, it could be too early, too late. And it wasn’t just a case of it being uncomfortable for me because I can feel the pressure build up in both the bladder and then back pressure through to the kidney.

My routine is that, during the day, as now, I just have the catheter and the flip flow. But, when I go to bed, I put on a night bag and that I find is very, very good because it enables me to go right through the night, which is so important.

Yes. And, in terms of leaking, leakages, are they more likely to happen at night or it can be any time of the day?

No, they’re less likely to happen at night. I don’t know whether it’s something to do with being in the horizontal and vertical position, but no it’s, yes a certain amount of leakage but it’s mainly during the day.

Yes. And do you have to change your routine a little bit if you’re going out anywhere?

Yes. And this is another thing that is quite, a bit of concern about this. I can go out, and usually I can go to the shop and back again but no problem. But the trouble is when you go on holiday and you’re on a coach journey, that can be difficult.

So, well I just try to watch what I’m doing and don’t have much of an intake of fluid but And it’s the same with going to the cinema. This is one of the places where I’ve noticed it most. Whether it’s the seats or whether it’s the atmosphere, but at the cinema, when it’s getting towards the end of the film, I’m beginning to wonder if I can last out [laughs].

Yes. So is it that the bag’s full by then or you’re uncomfortable?

No, when I go to the cinema I don’t use a bag. I have begun to wonder if I ought to, or could do. But during the day I prefer just to have the flip-flow that I can relieve at the urinal.

I didn’t realise how difficult managing the bag might be. And I have had several disasters when the catheter has slipped away from the bag’s moorings and there’s been a flood, which is. What I do now is I anchor it with a bit of micropore tape. And that seems to make it behave a bit better.

And was this while you were at home?

Yes. After I’d been into hospital, yes. And I had district nurses coming to call on me afterwards, very kindly, and telling me I was doing very well.

Good.

I thought, I felt pretty depressed immediately after because I felt I was tied to this bag and I would never be able to go out again or do anything again. And the district nurse took me, shook me by the shoulders, patted me on the head and said, No, you’re going to be fine. So then I felt better.

Yes. And you started feeling, you know, did you start going out quite soon afterwards or was it something that you were wary of doing at first?

Well I was wary, yes. But I live on my own, you have, going out isn’t an option, thank goodness. What you’re anxious about is will the bag show, will it leak and what will people think that you’ve got this funny bulge going down your leg or wherever it is. And it is often a bit difficult to keep it under control.

So you have a leg bag,

I have a leg bag. Yes.

Down here,

Sitting here on the inside of my thigh. And if you’re in trousers you have to think about where the taps going to be because you need to be able to get to it. It’s managing it, yes that’s a new skill.

Has it become any easier over time or?

Yes, yes.

So you were never given very much information?

No. And certainly the leg bags I’ve always found very entertaining because sometimes you get ones that are sort of hanging around your ankle, and sometimes you get ones that are right at the top of your leg. And there doesn’t seem to be any rhyme or reason.

There’s not much thought given to what it actually means to live with these on a day to day basis, and still be able to drive, and wear clothes normally. And even to have that comfort as well, so I’ve found that there were these stocking things [leg bag sleeves], one of the hospitals, cos I go in, I’ve been into various hospitals.

One of the hospitals had these little stockings that you could put the bag in and it made it much more comfortable than not having it. And sometimes I’ve had some really ridiculous experiences as well. When I had a bag at the bottom of my leg that it nearly fell out one day when I was shopping, because it got really full and, and you know.

And I’ve had another embarrassing experience where I was driving around the M25, and the traffic was really bad. And I was on my way to hospital and the bag just got fuller and fuller. By the time I got to the hospital I could hardly walk with this really full bag. And I arrived in the reception and I think I was just giggling because I was just so embarrassed. But you end up with these quite ridiculous experiences.

Have you had other terribly embarrassing experiences when you’re out?

No. Those have been the worst when I’ve thought, Oh my goodness, someone’s going to notice But I don’t know.

You talked about this stocking. Is that held up with suspenders?

No, it’s just like a little sort of mesh type thing that’s quite soft and you put the bag in and pull the little tap out of it. So it sits quite comfortably on your leg. they’re just a bit more comfortable than the actual elastic, the Velcro straps that you put on it cos I’ve found that the Velcro straps on my leg are quite uncomfortable.

If anybody asks about it [living with a catheter], tell em not to worry, you can handle it.

Tell them not to worry?

Not to worry, you can handle it okay. You don’t notice it. The only thing perhaps is when the bag gets full you’ve got to find somewhere, like a cubicle, a toilet to put, lift, to open it if you like, to open the tap to get it out. And if you leave it full you’ll find, I find that the burning starts.

Whereabouts is the burning?

In the penis, see.

Ah, so if it gets full?

Aye. That’s like I’ve had it once this morning, the burning, which is, you know, since I’ve got up saying what time is it now? So in about three and a half hours I’ve been, only had it once. You see, there is a dull ache there all the time but there’s nothing that you can’t handle.

If the bag gets full, does any urine come out of the penis?

No.

No. It just aches.

Aye, ache.

You can see that it’s nearly full again, since this morning.

So that’s a picture of the bag,

Yes.

The urine bag at the bottom of your leg.

Yes.