Try everything. don’t be pushed into doing what the doctors say immediately. Try everything, give everything a good chance. Try the intermittent. See if you can do it because the women I know, and men, who use intermittent say they have a much more normal quality of life than I do in many ways. They can bounce on and off toilets and live to some extent slightly more normally, feel less handicapped.

So if you can do it, try it. don’t be put off with a few failures. don’t be put off by the occasional leakage but be aware that if your situation is such that you do need to have a suprapubic, it’s a really good safe option and it’s worked for me. So, yes, that would be my message.

Ask questions. Ask them of the consultant as well as of the nurses and push for as much as you can get. Ask about bladder washouts. Ask about different types of catheter. Ask why there aren’t different types of catheter.

Sometimes I think you get the information too soon. it’s because, certainly again in terms of my injury which is a very long term thing, and it takes you a while to realise just quite how grave it is.

You get given a whole bundle of notes and information and it’s as if it relates to somebody else, not you. You don’t really take it in. I sometimes think that maybe it could come a little bit later in the process or maybe it could be repeated later in the process.

I also think there isn’t nearly enough information given about the downside and the possibility of infection. I mean in all the literature I read on, I was given and I read on catheters, drainage, urine drainage, there is absolutely no, nobody’s telling me Yes but you’ll probably get infections all the time

it’s not something that is, obviously the health service don’t want to talk about it. But it’s, I think people cop out a bit. I think there is an awful lot of turning a blind eye to it. Especially when you hear about the amount of resources that are devoted to treating knock on infection rates from bladders. So there’s a lack of forthrightness I think on the part of the information put out about different kinds of catheters, success-rates.

What’s it like going out now for expeditions? Going to work? Going to the cinema?

Well I don’t go out to work. I work from home but, if I go out for meals or the cinema, I just empty my leg bag before I go because you have to keep flushing your bladder and keep loads of water in your system for everything, for your bowels as well.

I drink a lot of water. I drink probably, as well as numerous big cups of very weak tea and coffee, I drink at least 2 litres of water a day. So it requires quite a lot of emptying.

Before I go out I always empty the bag and I try and make sure that there’s a disabled toilet somewhere. And it’s okay.

I mean to be honest I no longer have any shame or embarrassment about having a bulge in my trousers where my leg bag is. it’s like, in the scale of things, So what It might have bothered me at one time, but the harsh reality of my condition is such that hey, if anybody else is bothered by it, that’s their problem. I’m not.

I’m quite happy to sort of empty it out of, you know, out of the side of the car if it’s full up, then I just sort of whip it out of the side of the car and empty it. You get a bit sort of blasé, not blasé but hard-line about it. You just think, Tough. If anyone’s offended, that’s their problem. I’m going to sit here and empty my leg bag if there’s no disabled lavatory.

And in general your interaction with health professionals, how has that been over the years?

it’s fine. I mean what health professionals have done for me is mammoth. I’ve been helped enormously by some tremendous people, great kindness. The nurses in the spinal unit I remember being incredibly proactive about, they were really good at helping me manage all the different bladder options. They were better than the consultants to be honest, they were much; again it’s that whole thing about I think bladders and catheters being devolved to nurses. I think nurses know a lot more about it than the consultants, the actual practicalities of it.

Maybe that’s something that has to be changed if we want to develop a new catheter. But I can’t fault the hands on care I’ve had from the nursing staff in particular.

And your carers. Have you found it fairly easy to find carers? Do you get the National Health Service?

I have the local council. I pay for them because I’m still earning. I pay for my council carers who come every morning and they help me change my leg bag and they put the leg bag in its net every day when they put my trousers on. Yeah, it’s fine. It works. it’s quite easy now, it’s functional. it’s not nice but the condition isn’t nice, but it’s the best solution for me at the moment.

I was horrified when I found out that, basically, we were using a catheter system that was kind of invented in the 1930’s. That, for 80 years, we’ve been using the same thing and there is, for me, there’s a sort of hidden level of catheter problems that nobody hears about on the NHS.

A huge amount of the budget devoted to giving people antibiotics to dealing with the catheter related problems, and I can’t believe that the amount of technology there’s been in the last 80 years, especially medical technology, that there couldn’t be a better way of doing things.

I personally think that, if you’ve got bio-engineers, technicians, I mean surely there must be something they can do with electrical impulses or. I’m not a bio-engineer, but it strikes me that it is the Cinderella of the health service. It strikes me that it’s a matter that is, consultants, doctors are very happy just to devolve to the nurses. The nurses are great at it but the nurses aren’t the people who are going to push for something and say, Look we need an entirely new way of looking at this. A new way of emptying bladder systems that isn’t quite as primitive as the one we have.

I mean I don’t have any answers. All I know is that we are now developing smart phones with bendy screens that can go underwater. Why the heck can’t we develop something that can empty a paralysed bladder slightly more effectively, with less risk of infection than what we have?

Do you usually keep an emergency supply at home for changing the catheter?

I like to keep, I have spare catheters, yes, in case there’s an emergency. I have spare catheters there and spare leg bags. I like to keep a nice little stock pile and I suppose one always lives with the awareness that if you got a blockage you might have to have an emergency change. I still have with me, that I got from hospital, it’s an emergency urethral catheter pack. So if for some terrible reason something happened with my suprapubic, I have the ability and the knowledge, because they trained me to do this in hospital, I know how to do an emergency catheterisation on myself.

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.

My suprapubic catheter is changed once a month. The district nurse comes in. After my carers have been, they dress me but I stay in bed. And so my district nurse comes and she sets up on my bedside table and she does it very quickly. She uses the gel, the antiseptic and anaesthetic gel, so I don’t feel very much. I only feel it if sometimes, when she puts it in she can knock the bladder and I can feel it knock against the side of the bladder.

But it’s not too uncomfortable?

No. No. No, it’s not too uncomfortable at all.

And there have never been any problems doing it at home?

No. Touch wood, no problems at all. It works fine.

There was a little problem in that after, this would be after a month and they were going to change my catheter. I was in hospital for a year, so this was while I was still in hospital. They were doing my first catheter change, the first suprapubic catheter change and unfortunately when, maybe the hole wasn’t properly healed up, and when the doctor put the new catheter in it didn’t actually go into the bladder, it must have gone down the side.

Oh dear.

And so when the fluid and everything was poured in, it actually went into my abdomen, the cavity of my abdomen rather than into my bladder and so it was all a bit unpleasant. We had to go back at that point. They couldn’t get the hole open again

Oh dear.

I had to go back to a urethral catheter for I think a month or six weeks until they felt the bladder had sufficiently healed up to do another suprapubic procedure.

I was always determined to be as independent and as normal as possible, to make as much recovery as possible. And some of the nurses started encouraging me to consider doing intermittent, using a flip flow valve on the catheter so that I would collect urine in my own bladder and then empty it.

They were reluctant, I have to say the doctors were not so keen on this in the hospital. I think maybe because of more infection rates, I don’t know. But they were a little bit resistant to this, but I was very keen because it made me feel like I was getting better, if that sounds that that my bladder was expanding and collecting urine. I could actually feel when my bladder was, it pleased me because I could feel that my bladder was, when my bladder was quite full. I didn’t have any leakage urethrally.

Did the nurses explain why they thought it was a good idea?

They thought it was a good idea for me because I was quite young and quite active and determined to sort of keep going.

I’m surprised the doctors didn’t think it was a good idea.

Just slightly more conservative I think. As it turns out I’m back on a leg bag. Because I came home with the, doing it with the flip flow and collecting it in my own bladder.

Oh I see, with no bag.

With no bag. I came home doing that, but that’s when I started getting infections. I had some UTIs when I was in hospital with reasonable regularity, but I suppose I was so busy doing physiotherapy, the whole routine was such that I wasn’t, I didn’t fall prey to infections in the same way. I didn’t have so much time to notice them if you like.

When I came home I was still doing the flip flow with the valve. I started to get infections and I could smell when the urine was, I could smell immediately when I had an infection. I took advice from the spinal unit who said well one thing to do is to go back to the leg bag.

Do you sometimes close it off using the valve even though you’ve got a bag?

No.

So it’s just on continuous drainage?

it’s on continuous drainage, yes. So when the infection, the urinary infections started to take hold after I’d come home, I fairly swiftly went back to using a leg bag strapped to my leg reluctantly. But I thought it would just be temporary. Unfortunately, I’ve remained with it. I think given my hand function, it’s probably a bit easier. it’s probably slightly easier for me to manage. it’s less, I feel more disabled with it and I feel less like a normal woman if you like. But maybe I’m just being a bit more realistic and accepting that the flip flow wasn’t really suited for me.

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.

I’ve never leaked through the site of the suprapubic. I did leak for a while when I was first using, when I was doing the intermittent, the flip flow using the suprapubic. I did start leaking urethrally. I blamed myself for that because I didn’t empty my bladder often enough and I think I overstretched it. I started leaking urethrally. I did it in the cinema one day – and it really kind of upset me. I had to get in a friend’s car to go home, wet the car seat and that traumatised me a bit. I think that was another significant reason for going back to a leg bag because I had more control and more insurance policy if you like that I wasn’t going to leak in public.

Have you ever had a blockage?

There was one evening when I suddenly realised that my bladder was under incredible pressure and that I was leaking. I panicked and started phoning my friends, a friend who is a nurse. It was quite late at night. Then I moved the tube, again it’s a learning experience. I moved the tube on my leg and it must have been kinked and, you know, by my knickers or kinked to my groin or something, and suddenly it cleared itself and the leg bag filled up. But you only learn these things by them happening. it’s a hard learning curve.

So you’ve never had a blocked, a really blocked tube or anything like that?

No, touch wood, I’ve never had that.

When I started getting infections, I was curious I think because I was maddened, because I wanted to know how the germs were getting in. Whether they were going in urethrally or whether they were going in through the actual site, the hole of the site on my belly. Or whether they were going in the end of the catheter. I suppose by putting the leg bag on, you distance the risk of that happening because you’re not going to get germs. it’s unlikely travelling all the way, right up the leg bag and into the bladder that way. But I’m now fairly certain that the infections are caused urethrally.

Oh.

That’s caused by contamination from my bowel.

Oh.

I sort of pinned that down.

Can you take any steps to reduce the infections?

Well what made me realise, it’s detective work, it’s finding out, like a spinal injury, it’s a case of finding out about your own body. Which is tough because there’s no-one to, there’s no-one that knows it or can give you advice because every spinal injury is so different.

So I sort of could carry and continue, carry out a continual audit of my body and sort of detective work to try, and I changed my bowel routine. I started using an anal irrigation system and that helped to reduce the number of UTI. I was getting a UTI every month. I still am getting a UTI every month. But that’s for another reason.

But about a year and a half ago I changed the bowel routine and, I think because I was less contaminated, I was getting fewer infections. I had quite a breakthrough with that. I also started using a silver catheter, a Bard silver catheter, which I thought would be coloured silver. I was very disappointed. But I thought it would be bling but it’s not. The silver coated one, that seemed to help a bit.

I know I’ve got one [UTI] first of all by the smell of the urine. It starts to smell of rotting vegetables, a bit fishy. it’s that sort of sweet sickly, I know immediately I have a urinary infection.

I also, because I’m, because of the spinal injury, I get an increase in spasm and tightness and muscle tone. That’s also another, my legs go very stiff and rigid. That’s another direct symptom of a UTI. I don’t tend to get shivery and feverish so now I just have to accept and take some antibiotics.

You touched on self-image. How does having a catheter and a bag affect your self image, on top of all the other problems you might have?

Well it’s pretty rubbish really. You know, I mean having a spinal injury is very desexualising. You stop really feeling like a woman and, when you have a tube coming out of your belly, it’s hard. it’s very hard. it’s been a long process. it’s been nearly three years for me now but it’s still ongoing, that process of learning that I will never be the person that I used to be, the woman that I used to be, that I’ve got my tubing externally rather than internally now.

So it is hard and it’s hard to wear nice clothes when you have to, I said about wearing skinny jeans, I used to love wearing skinny jeans, I’ve got long legs. But it’s not functional anymore so you have to be, some things you have to give up on. But, on a good day, you know if you’ve got a nice pair of suitable trousers on and you’ve got enough make up on and you’ve done your hair, you can pretend you look okay and nobody knows that you’re peeing out of a tube out of your tummy.

If you were trying to reassure somebody who was trying to make a decision about having a suprapubic catheter as opposed to a urethral catheter, what are the pros and cons as far as you’re concerned?

For me, I can see it and I can control it. Because I can’t separate my pelvis and I couldn’t explore myself urethrally the way some people might be able to do. But, for me, the suprapubic is much easier, more functional. It allows me to take responsibility. I also think I would find a urethral catheter very sore, and I couldn’t go horse riding or anything like that.

This enables me still to horse ride, to go on an exercise bike, that kind of thing that I couldn’t do urethrally. Because around the urethral area, I am, I still have some, a little bit of sensation and I think I would find it very sore.

That’s a big advantage.

it’s a big advantage, yes. The suprapubic, you don’t get any pain from the suprapubic. You can keep it clean. You can see whether it’s functioning or not. I can see the colour of my urine. I can see if there’s sediment in it. I can smell it. I can, it gives you control back in a situation where God knows we all feel we’re completely out of control.

That’s really important.

It is important. Once you come to terms with the situation, you think, Okay, well how best can I deal with it, given that that’s the way it is And I have to say the suprapubic has proved to be the best for me without doubt.

Well in April 2010, I fell off my horse jumping over a small fence, and landed on my face and my body, flipped over. I broke my neck at C6 and my lower back was fractured. But it was the neck injury that was the bad one, so I was left as an incomplete tetraplegic with impaired hand function and a loss of function throughout my body from my arms down.

I was in hospital. I had an operation. I was in intensive care and then high dependency. I had an operation to plate my neck and I was, of course, at that point, on an indwelling catheter.

A urethral?

Urethral indwelling catheter. And I had no concept of, because I was out for the count with morphine, I had no concept about bladder and bowels being paralysed or anything like, any of the sort of the side effects of paralysis that ordinary people, you just don’t know or think about.

I tried the intermittent, it didn’t work. So suprapubic seemed to be the final option and I was given literature etcetera.

And what was it like having it inserted under local anaesthetic?

That was very, very sore I have to say. I mean, because I’m incomplete [partially paralysed], having a, it wasn’t sore at the point of it being done but when the anaesthetic wore off, it was incredibly sore. I mean I could feel it and I could feel I’d had a vital organ punctured.

Was that local anaesthetic injected, or was it an epidural?

It was injected, yeah, it was injected.

How long did the pain or discomfort go on for after it was inserted?

It was a few hours. It was, I mean I felt pretty ropey for about 24 hours. And I had to get extra pain killers.

When I had the urethral catheter, it was at that stage I was still so in shock from my total paralysis that I had no awareness of what was happening. I had no concept of my own body. I had lost my own body. At the time, I was wearing a body brace and a neck brace. I could hardly sit up.

I knew I had a bag strapped to my leg but I wasn’t even sure where everything was coming out. You know, it was all somebody else’s responsibility. I didn’t even realise I had to go and get my bag emptied cos I could hardly reach down and feel my bag at that stage.

So the urethral catheter was, it was something that happened when I wasn’t at all in contact with my own body.

They [medical staff] encouraged me to try, I think because the gold standard is to do intermittent self-catheterisation, where you empty your own, you put a catheter in every couple of hours and you empty your own bladder, I was encouraged to try this.

Unfortunately, my lack of function is such that getting onto a bed, getting my legs onto a bed, getting my trousers down and being able to diamond shape my legs and, and do everything with a mirror, it was just physically beyond me. I couldn’t really do it and it exhausted me.

We persevered for a little while with help. The nurses help but, after a while, they said, Look, you’re not going to be able to manage this independently. it’s probably better that we start thinking about other alternatives

I was disappointed. I really wanted, because I knew it was the gold standard and I was so determined to try and make it work. But I realised how marginal it was and I realised I couldn’t do it without help.

I came home, at that stage I came home, I was coming home from hospital at weekends and that weekend I had to ask friends to come up every couple of hours to help me get on the bed and empty it. And I just realised that it

And also you had to wake in the night and empty it, and it was too disruptive. It was not my, you know, my husband couldn’t cope with it. And it wasn’t fair on anybody. So I reluctantly faced the inevitable and I moved to a suprapubic.