I leave the leg bag attached to my leg by one strap, in a different position where it’s normally done up, so that gives my leg a break from the straps, and it means it’s fairly safe from a turning point of view. Certainly when I was in hospital they used to pin the leg bag to the bed, which used to worry me a bit, especially if I fell out of bed or something like that, not that I ever did. But it seems to me that if it’s attached to my leg, it’ll go with me.

So during the day, it’s in a different position?

During the day, well actually during the day it’s on my left leg and during the night it’s normally on my right leg. Generally that’s the way I sleep, but if I’m somewhere else it might finish up here

How often do you need to change the bag?

The bag I change weekly.

Well, I went back to work and in a factory a few months after I got out of the Spinal Unit. And did that for a few years, which wasn’t too bad. Access to Work did an adaptation on a toilet there for me. Yeah, travelling and going places is not, it’s not a problem. In fact it’s barely more difficult that it was, as long as you prepare. As I said, I’ve got a bag full of stuff in the car so, if push comes to shove, we can change my catheter. I reckon I could probably do it if I had to. I’m sure my wife couldn’t, even if she had to. And you phone ahead or just research where you’re going. It’s relatively simple now with the internet, you can go and street view it.

If you’re going to stay in a hotel, you phone them up and talk to them. Don’t rely on what they tell you. Sometimes I’ve asked people if they could take some pictures and e-mail them to me. If you’re going to a hotel room, you know can you take a picture of the room, because if they don’t have an adapted room 90% of the time that’s not a problem, you can get close enough to the toilet to empty a leg bag. So just get them to take a picture and you can have a look at the picture and make your own decision. You have got to live with it if you’ve made the wrong decision, but you can’t blame them then.

I still go out and visit customers. I go and do some teaching in adaptive technology. I can transfer in and out of the car myself and travel quite easily. We’ve got a caravan which we’ve adapted. I haven’t really adapted the loo; I can just about get around the corner enough to empty my leg bag into it. But most of the larger caravan sites have got beautiful facilities these days with good showers and toilets, and plenty of grab rails and hand holds, so that’s not a problem.

I had a bit of an up and downer with the district nursing a while back. I used to, back in the old days, for the first half a dozen years of my catheter care, I used to get one of two district nurses and that was it. Nowadays they just use, they’ve got a team of district nurses and they all get sent everywhere, which is fine as long as they all work pretty much the same way.

It was nice having the same person come nearly every time cos we sort of felt comfortable and both knew how each other would react. So when I started, when they started just sort of using whatever nurse was doing this area that day, changing the catheter had always been a two glove procedure. They’d put two sets of gloves on to do the removal, take the first set of gloves off, and then do the insertion with the second set. And I had one nurse who just used one set of gloves for the whole procedure and generally seemed a bit sort of slapdash.

The other slight problem that occasionally happens is they put bucket loads of Instillagel on the catheter. And they wave it about and you get Instillagel going all over your bedclothes. It’s fine in a hospital. But I don’t really feel they should be doing this in people’s bedrooms. So I had a bit of a complain about this and the boss district nurse came out and reassured me. And said they were going to improve their policies and say, Look guys, you all do it this way, which up until recently stayed true.

But a couple of changes ago I had a one glove procedure and I had a word with the nurse and she’s going to have a word with the boss.

The other thing, I prepare the catheter, no not the catheter, leave the catheter sealed but I put the flip flow on the leg bag before they get there cos I have to cut down the pipe otherwise they’d fit it with the full length of pipe. The other thing I always try and encourage is that they connect the bag to the catheter before they insert the catheter. But quite a few seem to like to leave it dangling about in a little cardboard bin, to see the drainage. My argument is you can see the drainage just as well if you’ve got a leg bag on it, cos it’s got a transparent pipe and it saves the risk of it running over the bed or getting knocked everywhere. So that’s potentially a useful tip to nurses or users. Generally speaking they’ve all been, it’s all been quite good. The district nurses are fine with it.

I throw all the leg bag, night bag and flip flow away and put a new set on.

And these you get on prescription do you?

Yeah.

Are they delivered here?

Yeah. The pharmacy, there’s a pharmacy in the village that deliver it, as pharmacy’s will these days. They’ve actually just retired my leg bag. I had a letter from the manufacturers of the leg bag two days ago to say we’re about to retire this product. Which is a bit of a shame because it’s called a knee bag and it’s a 1500ml bag. And it doesn’t actually look too bad when it’s full, but it gives me that much more scope to drink when I’m out somewhere where there isn’t a good place to go and empty my leg bag. So this morning I’ve been researching other leg bags. I found somebody else does a 1300ml one, so that will help.

I can’t really see any need to change [the catheter]. As I said, it would be nice to have a, well sit down with an array of products and a person who knew about them all, who could sort of say, Well, you know this is different. But I don’t really think any of them are different. They’re just made by different people and they might be a different colour.

If someone was going to improve the design, in the ideal world are there improvements that you think, Oh it would be really handy if this happened, or if it was like this? So, you know, if they were going to take into consideration the views of people who use the catheter, are there any improvements you personally would like to see?

Oh crikey. I’ve often wondered, the leg bag I have at the moment has quite a long tube on it. And I cut that tube down to about whatever, two inches or five centimetres, because otherwise it would just finish up in a huge concertina of tubing that I’d have to fold up and find a home for. And it occasionally occurred to me that it might be easier, I believe certainly in the urethral catheter end of things there are female catheters which are much shorter. So perhaps it would be easier to have a shorter catheter, which would put the joint up sort of within your knickers rather than on your leg somewhere. But I haven’t had a chance to try it, so I don’t really know whether it would be better. It just seemed that might be a good idea.

As far as the rest of it goes, there’s not a, I can’t see there’s a lot you can do with a suprapubic catheter externally. It’s going to be a pipe and a joint. The push joint it has is good enough. There’s, from a cleanliness and sterility point of view, that’s probably the best way to do it. No, I can’t think of anything much you could do to it really.

I get over granulation occasionally, which the local district nurse has given me a tube of Aureocort for. It’s a steroid cream. So, periodically if that starts to get a bit long and in the way, I go dab that with a cotton wool bud and a bit of cream.

I shave round the hole because I’m personally convinced that the hairs getting in the hole aggravate the skin inside the hole and can promote the granulation. And also it means that I don’t have quite so much of a problem with the, when I take the, I wear a pad over it cos it does weep a little. And when I take the pad off, it doesn’t pull the hairs out as much. It’s just covered up the skin. I don’t have enough sensation to suffer so, only a little bit.

I’ve not had a lot of UTI’s. I drink cranberry juice dilute all the time, in between coffees, and I try not to drink too many coffees because it’s not good for you.

Is the cranberry juice with water?

With water, yeah. Probably under 50% cranberry juice. Probably 30 or 40% cranberry juice and the rest is water. I should imagine I get through a litre box of cranberry juice in two or three days. I try and keep the fluids up, drink on average, I’d say I drink three and a half litres a day, or past three and a half litres a day. Some days I have bad days, some days I drink more…

…I was told at the Spinal Unit to keep the fluids up I think they probably suggested four litres a day, but no maybe not, three and a half to four. And I’m always, I just, they just brainwashed me into doing it, and I’ve done it ever since.

Cranberry was and still is, to the best of my knowledge, suggested to be a good thing for keeping bacteria off the bladder wall. It won’t do anything for the pipework of course. And I quite like cranberry juice, probably because I drink it every day. So that’s just become my way of life. I drink currently cranberry, and I drink coffee at home, mostly dilute cranberry. Yeah that’s it. They just brainwashed me into drinking a lot.

I use a flip flow catheter valve, somewhat sporadically, basically about twice a day. When I get up in the morning I close it off and then I open it again. I can feel my bladder start to be full. And, blissfully, even if I couldn’t feel it, if I have leg bags full or I’ve got a blockage, I will actually leak urethrally before I descend into bad dysreflexia, so I’m quite lucky there really.

But I haven’t really seen any good documented benefits of keeping your bladder stretched in the long term. If you’re not about to start using it again, which I don’t think I am, but I do use the flip flow. I close it off in the morning and then open it when my bladder fills and then I generally close it off at bedtime because I always read or watch something on the laptop, do some work when I go to bed because I get bad pain in my feet for a while when I change position. So, by the time I’m ready to lie down, normally my bladder has filled up again.

Approximately 17, it could have been 18 years ago, I was trimming the hedge at the bottom of the garden. I fell off the steps, broke my neck, C6/7 incomplete. I finished up at the spinal unit. I had seven months in there.

I had an indwelling catheter while I was lying down on traction. I stayed with that and then started to experiment with that, or the nurses in the spinal unit did. We tried, because I was incomplete, it’s a slightly reflex bladder and slightly not. So we did have a go at condom drainage but it doesn’t work very well. It makes me slightly dysreflexic, but only just very slightly.

So then I was offered a suprapubic catheter, which was not an easy decision at the time, not knowing what it was going to be like, which you never will till you’ve got it. I just talked to other people about it. Everybody I’d met seemed fairly happy, except the guy on the bed next door who had a terrible problem with blocking all the time with any catheter.

UTI’s, I’ve only ever had one really bad one that made me weak and shivery and ill. Normally I’ve just got it, I’ve known I had a UTI. I used to try drinking it into submission. But recently I’ve given up on that. It doesn’t work and some of the nurses have actually admitted that the general perception is that you might as well not bother, it doesn’t work.

Over the last three years until the middle of last year I think, I had a problem with getting a UTI who’s only effect was to make you smell really bad, made the urine smell really bad. And I tried drinking that into submission. I tried taking antibiotics. My doctor leaves me with Citalopram here, so I’ve got a course, a 5-day course of Citalopram in the drawer should I need it. She trusts me to recognise that I’ve got a UTI and I need to take it. I don’t like taking antibiotics because you just wear em out.

But, with this smelly situation, I was getting quite depressed about it and it was going on for months. I took Citalopram, that didn’t kill it either. I went to the doctor and took Flucloxacillin I think it was, not the Citalopram Ciprofloxacin, that was the normal antibiotic. Fluclox was the second level, that didn’t get rid of it either.

So eventually I went to the Spinal Unit for urodynamics, which got rid of it. Which could have been the intravenous antibiotics they gave as a matter of course, or I don’t know, but it went. And it stayed gone for months, five, six months, and then I got it again and I tried drinking like mad, tried the various antibiotics, didn’t do any good. So this time they said they’d do a cystoscopy. That fixed it.

How often do you need to change the bag?

The bag I change weekly. I have a bladder wash once a week and change everything from the catheter downwards in effect.

You do that?

I do that, yeah. It used to be called a Suby-G, which had some other chemicals in it, but I think the general feeling now is for just a saline chloride mix. So yeah I give that a good sloosh around two or three times, fill it up, empty it, fill it up, empty it. And then I throw all the leg bag, night bag and flip flow away and put a new set on.

And these you get on prescription do you?

Yeah.

Are they delivered here?

Yeah, the pharmacy, there’s a pharmacy in the village that deliver it, as pharmacy’s will these days.