The only thing I would say to people which I didn’t know for a couple of years is you can get free prescriptions. I used to spend a lot of money, obviously antibiotics, the catheter, I mean there’s so much you need that goes with the catheter, you know, the water. And that’s what I found on that site, Bladder and Bowel Foundation, that I used to go on. I found out that, when you’ve got a stoma, a permanent one, you can get free prescriptions.

Oh, so all your drugs now are free?

Everything. Yes.

That’s really important.

Even my GP didn’t know. Because I had to get a form. I can’t remember what the form’s called, from the doctors. And obviously you’ve got to write down what’s wrong with you and then the GP signs it.

Oh good, that’s really important.

Yes, yes, because like I say it used to cost me a lot of money for prescriptions.

How does having a catheter affect your everyday life?

I never know how I’m going to be. This is why I packed up work because some mornings, you know, if I had pain or I can’t bend, it’s just painful even on walking. It just feels like the tip of the catheter’s rubbing the inside of your bladder and it’s really sore. So I stopped work.

You just, sort of, I’ll make arrangements, say I don’t know, go into town shopping with my daughter and I’ll get up and I’ll just think, and I can’t go because I can’t walk around for too long. And then another day I’m just, what I call normal, like everybody else and just go out and walk around, do your shopping whatever. It does affect your life, well it does mine anyway.

Have you had to make, apart from giving up work which is a major thing, have you had to make any other sort of major changes to the way you live?

No, not really.

Does it affect the sort of clothes that you might buy?

No, no.

And what happens if you wanted to go swimming for example?

Yes, I go swimming with it.

Just wear your bathing costume over it?

Yes it don’t, well once you’re in the water, nobody can see. They might see a bit of a tube but, if I’m on a beach, I will wear like a sarong or something when I’m sat on the beach rather than just lay there with it sort of, you know. But if I’m going to go in the water it doesn’t bother me, I don’t find any problems with that.

Can you talk a little bit about how it drains and do you have a valve and all that sort of thing?

Yes, I’ve got a valve on mine. I don’t wear a bag because I still get the feeling, I know when I want to go to the toilet so I just go and release the valve.

That’s quite easy then?

Yes. I mean it has made my life easier in some ways because I know, well it has got blocked now and again and you have to get the nurse out. But knowing that I can just go and have a wee and it’s not going to take me five or ten minutes..

Have you ever had to cope with any sort of embarrassing incidents?

Yes. One was quite funny. We’d been out for the evening up to a club up the road and some friends came back with us for coffee. And I’d had a wee before I left the club and I’d obviously forgot to shut the valve off. And when I got home I must admit I did, I thought, luckily enough I had black trousers on. I thought, took my shoes off and I stood, I thought that floors wet. And I thought, I did blame the dog. I thought that blooming dog’s had a wee there. It was out in the hallway, and all of a sudden my legs started to feel wet and I thought no, that’s not the dog, it’s me.

But I didn’t say anything I just run upstairs, I blamed the dog and cleaned myself up and put a different pair of, another black pair of trousers on, but that’s the only embarrassing thing, but then they didn’t know because I blamed the dog anyway.

So it hasn’t been too bad?

No.

How often do you have to have your suprapubic catheter replaced now?

I have it done every ten weeks.

Can you talk about that a little bit?

I hate it. It’s horrible. It is very painful, I find it very painful.

And where do you have to go to have your catheter changed?

The district nurse does it because I’m able to get out. I go down to the surgery. She does it down there for me. No, it’s not very nice.

Can you just explain what happens in detail because people want to know?

I suppose everything’s different, everyone’s different aren’t they. I mean, first off I used to go to the hospital and have it changed. I suppose I got used to the lady that was doing it. I did have a different type of catheter in at the time and that was horrendous having it changed. And in fact she just used to go, Right, ready? yank and it wasn’t nice. She used to just yank it out and I went to her for nearly a year. I used to go every six weeks then.

And I got fed up with going over there so, I can’t remember who I went and saw, but I asked if I could have the district nurse do it, which I did. She told me that they’d been using the wrong catheter. This is why the change was so horrendous and I think, because I had a bad experience at the beginning of having it changed, I’m always uptight for about a week before. It’s not very nice at all.

But once the district nurse, I mean I’ve had her for six years now, she’s lovely. She sort of sorted out the different, tried a few different catheters to find one that suited me, because they don’t like using the latex now but, because it suits me, she’s still quite happy to use it.

When you say it suits you, what’s better about having the latex one for you?

I don’t seem to have as many problems as I did with the changes.

It’s better for you putting it in and out?

Yes.

It’s not living with it, it’s putting it in and out that’s easier is it?

Yes, and I think, from what I’ve been told because, I don’t know, I haven’t seen any of the silicone catheters, I think these ones are softer. I think the silicone are a bit harder. I don’t know because, I as I say, I’ve never used one. But when I go and have it changed now she uses Instillagel, she puts that all around. I don’t know if it really helps but I always take two Paracetamols before I go, and two Buscopan before I go.

Two Buscopan?

Yes, I use that for bladder spasms as well. Then she deflates the balloon, a little twist, and she says Right are you ready?’ Sometimes it’s not too bad and sometimes it’s like oh God. And I’ve just got to lay there and it’s just, and obviously they’ve got to be put back in quite quick haven’t they because your stoma can close up. It’s not too bad going in I think. It’s the coming out that’s the worse bit.

Sometimes it’s worse than others. My last change was horrendous. Then she blows the balloon up. You sort of feel that and that’s basically it.

Sometimes I can come out of there and I’m in quite a lot of pain for the rest of the day, maybe a couple of days it’s a bit sore, and someti

You said you take Buscopan?

Yes

Do you get any side effects from that drug?

Not from that one, no.

And do you take that at other times as well?

I only take it if I’ve got really bad spasms.

Do you sometimes get spasms at other times then?

A lot, yes, I get them a lot

Has anybody else, any other health professionals been involved in your care apart from the GP, the district nurse and the consultant?

I did see a continence nurse once when I first, after about a year of having it [catheter] because I was in so much pain all the time. And she was the one that got the GP to write up for the bladder spasm tablets. I was on oxybutynin then but I couldn’t put up with the side effects of them.

That was a year after you’d had the catheter?

Yes. I was referred to her from my district nurse because my district nurse had said she knows more than I know, you know about bladder problems. And she wrote to my GP about the low dose antibiotic every day and the bladder spasm tablets, but until then I hadn’t had anything

…the only thing I can probably think of is, if anyone has to have a suprapubic, I think you’re probably getting more bladder spasms wearing a bag than you do not wearing one.

How have you found that out?

Because when I used to put one on at night, like I said, say it was only for a week but I found I used to get quite a lot of pain. Then last week, as I say, when I had one, I just wore one all day so I could drink plenty and flush it all through, I could sort of feel the urine coming out and it’s like cramping at my bladder. And as soon as I shut it off, everything seems to settle down. And then I think other people that I’ve spoken to that do wear bags, they seem to get a lot more bladder spasms than I do.

The only thing I would say to people, which I didn’t know for a couple of years, is you can get free prescriptions. I used to spend a lot of money, obviously on antibiotics, and catheters. I mean there’s so much you need that goes with the catheter, you know, the water. And that’s what I found on that site, Bladder and Bowel Foundation that I used to go on. I found out that you, when you’ve got a stoma, a permanent one, you can get free prescriptions.

All your drugs now?

Everything.

Are free?

Yes.

That’s really important.

Even my GP didn’t know. Because I had to get a form, I can’t remember what the form’s called, from the doctors. And obviously you’ve got to write down what’s wrong with you and then the GP signs it.

Oh good, that’s really important.

Yes because, like I say, it used to cost me a lot of money for prescriptions.

You said you get a lot of infections. How often were you getting urine infections?

I can get one a month, or I can go a couple of months. Probably the longest I’ve ever gone, probably be about three months without any problems.

And what are your symptoms when you have a urine infection?

Having to go to the toilet more frequently, pain, some days I can’t even walk with the pain.

Really?

Mm, this is why I packed up work in the end because I just wasn’t reliable. Yes very, I don’t know if it was the infection that’s causing the pain or when you’ve got an infection its starts off the bladder spasms, I don’t know.

So if you suddenly develop an infection do you go down to your GP or do you have some antibiotics available to start taking straight away?

No, I usually take a sample down and they test it. They’re really good. Take it down and the receptionist, I think they all know me down there by now. And then they send, usually the nurse will dip it and it’s usually showing, like everything. A lot of the time, obviously they send it off and usually get the results back the next day. And a lot of times it does come back negative but the GP usually does give me an antibiotic and it always seems to clear it up. Which is strange when it’s coming back, you know, with nothing in it.

Yes, and have they explained why that might be?

No.

The problem started, it would be 22 years ago when I gave birth to my daughter, after I had her I couldn’t wee, so I had an indwelling catheter. I had that in for a day and it was taken out and I started weeing normally, painful but slow.

Was that a natural delivery?

Well it was a forceps delivery, yes. What happened then? And then ever since then really I’ve always had a very slow urine flow and pain on finishing passing urine. I had numerous hospital appointments and they couldn’t really find anything wrong. Was put on six months of antibiotics as they thought it might have been a bug or something, but that didn’t clear it.

Then I think I went in and had a cystoscopy and a bladder stretch, they couldn’t find, well I have a narrowing of the urethra. I can’t remember what it was called now, scar tissue. It did work for a while, my urine flow was a lot faster but I still had a bit of pain on passing urine. But then after about a month it just all went back to normal. And then for years I just lived with it.

How long did it take you to pass urine?

Oh I could be in the toilet five or ten minutes.

Oh really?

Yes.

And pain at the end?

Yes.

I was under the hospital again and they wanted to teach me to self-catheterise. So I had to go in for a few hours and they would show me how to do it and everything. Anyway, I couldn’t do it and I’d come over all funny and everything. And the nurse put me up on a bed and said she would try and do it, but she couldn’t get one in. And they even got a paediatric catheter and that wouldn’t even go in.

And I’d had enough by then. I said No, leave me alone. I’ve had enough, don’t want to know. And that’s when I sort of carried on coping on my own again [sometimes she needed to pass urine very frequently and passing urine sometimes took five to ten minutes].