So can we go back to how often you have your suprapubic catheter changed?

Well, that is a contention now. Originally it was once every three months. They used to come in once every twelve weeks to change it. So four times a year.

In conversation with my urologist just in the last couple of months, it seems that he’s suggesting it should be changed more often. He’s not actually given us a date, but maybe once every two months or even six weeks.

There is an issue regarding indwelling catheters. And the way they work is that the catheter is put through the hole in your tummy into your bladder and a little balloon is blown up to keep the catheter in place. However, since it sits in your bladder and your bladder basically contains a solution of solids, those solids actually deposit on the balloon and the catheter. And because there are actually solid particles in your bladder, they are an ideal hiding ground for bugs, bacteria. And that’s where so many of the bladder infections come from. Because basically those solids which have been deposited round your catheter actually cause the problem.

That’s the reason for changing it quite often?

And what he’s saying is that it’s not the insertion of the catheter which is the problem, it’s the removal of the catheter. Because if you think about it, the balloon gets deflated. All that deposit breaks off and goes down into the bottom of the bladder. And it’s extra breeding ground for bacteria.

So he’s suggesting that the catheter be changed more often. And we have talked about it and I need to, I’m probably going to email him in the next, well, next few days to actually to say, Well, how often, you know. Tell my GP that the district nurse needs to do it, every, you know, six weeks, two months, rather than every three months

Can you go into a bit more detail about what it was like actually having to have a new catheter, having it replaced? Did they do that at home?

No. That was done at the surgery. It was something that, I just hated it. The catheter lasted about two to three months maximum, it should be. But, unfortunately, I used to try to leave it in as long as possible. But the drawback there is, of course, you can get an infection, which unfortunately I did a couple of times.

Before we go into what it was like when you had an infection, was it painful having a new catheter inserted?

Yes, very much so, unless you had somebody who was good at it. But, unfortunately, some of the medical people aren’t. When I was in the hospital, they tried to put one in one time and I think they had three different people, doctors and nurses doing it. And it just, each time my body rejected it and so I came away from it.

When you say your body rejected it, what do you mean by that exactly?

It wouldn’t accept it. Every time it went in, it came out.

Oh.

They just couldn’t get it to stay in.

So they never managed to get it right in to the bladder?

Apparently not.

Apparently I’d got an enlarged prostate, which nobody seemed to be bothered about, only me. You can imagine, I don’t know whether you can imagine or whether you know about prostates. There’s two and they’re close together. And the pipe down to your bladder goes in between them.

Well one of them got enlarged. And when they took the catheter out. It fell over onto the tube. So you can imagine putting the tube, the new tube back in, they had to shift the catheter over, which was a bit on the painful side. I had water in my eyes I’ll tell you, and that went on for about three years. And I was crippled with it, really was, I had some terrible times.

You lived with the pain for three years did you?

Yeah, and the doctors knew I’d got this doing [enlarged prostate], but they didn’t do anything at all about it. And one day, I have a computer, and one day I went on the computer and I put in prostate’ actually. And I read all about it. And they said that, with an enlarged prostate, you can get a herb which reduces it. Well this is only about a year ago. And I got some and, in no time at all, that worked and it reduced it. And the catheter goes in and out with no bother at all.

The right way to put my catheter in, this is only for me, it might be different for other people, is to put the catheter right in up to that V and then, over a day or so, it gently slides out and that’s perfect.

And I’ve had three incidences in the last fifteen, twenty years, when the nurse has put the catheter in, and I’ve said to them because I’m very, very adamant of what, because it works, its works for me and I know the consequences. And as I say, this only happened beginning of November with one nurse. I said, Look, that catheter’s not in right She goes, don’t tell me what to do This is it, this is what she said, don’t tell me, I’ve been, I don’t like putting catheters in, but I know what I’m doing

I said, You don’t know what you’re doing. Make notes on your diary because that catheter isn’t in for me And she left it out eight inches. And I said, That’s going to give me a problem She goes, Look, I know what I’m doing end of matter. And I was really cheesed off as you can imagine. I wasn’t very well.

So that was bleeding in the night, so what she’d obviously done, I don’t know how much you know, but my urethra’s quite long by now. So she’d blown the balloon up in the urethra and that was where the blood was coming from. None in the urine, so she’d damaged my urethra, no blood or traces at all in the urine. So you could tell and then I was really ill, probably one of the illest I’ve ever been. I got up, because we phoned the nurses out to come and push it in further, which helps me. And they wouldn’t come out.

Right, the district nurse?

Yeah, absolutely. So I struggled to get up, really struggled. I was ill, my blood pressure was 200 over 160, you know that’s high.

Do you go back to a hospital to have that done [catheter changed], or do you have that done here?

Well, it’s a fairly long story. Initially when I arrived [in the nursing home], they said, Yes, of course, yes there’s no problem about changing catheters. Our experienced staff know how to do things like tha. Then, when it came to my first change, they started scratching their heads and looking at it, askance, Hmm, don’t think I could trust myself changing that, we’ll get the GP to do i.

So what happens, yes, the GP comes and the first time, although his hand was shaking very badly, I think he had some neurological problem. I thought, Ooh this isn’t going to be any good with the hands shaking like that Eventually he concentrated and his glasses fell off and he eventually managed to get it in and inflate the balloon. And said, Well, that’s no problem that. So once or twice the GPs did that.

The third time I believe it was, one of the main GPs at this practice came in and was looking even worse for wear than he usually does. He had the nurse with him. He said, Well, don’t forge, and I, no I reminded him, I said, don’t forget, I was told by the consultant you must put the new one in immediately you take the old one out otherwise there could be serious problems. The hole will start to close up and he won’t be able to get it in

He said, Yes, ye. So what does he do? Yes, he didn’t know the size I had, although it was on my care sheet, at least I think it might have been. It should have been size sixteen. So they turned up with a size fourteen and they said, Well we haven’t got the sixteen

Then eventually they found a sixteen at the top of a cupboard somewhere, or a bottom of a cupboard. And he deflated the balloon, took the old one out, thought, Oh this is good, this is eas. Then he was just about to put the new one straight in when he dropped it on the carpet you see.

I said, Oh you’re not putting that in are you So the nurse, poor nurse, he said, Hmm, get another on.

So the nurse sprinted, I mean she wasn’t a professional sprinter, she was Romanian and quite fit. She sprinted down the corridor and searched various drawers, eventually, a little belatedly, came back with another similar catheter. And with this one, I don’t think he dropped it again, but he said. I can’t get this in, I can’t get it in nowou’ll have to go to hospital

So I went to hospital and fortunately somebody eventually managed to get it in that first time, at the local big [Hospital] here. So having spent, oh I think probably a day and a night in the hospital because of this incompetence on the part of the GP, I was all right for another six weeks.

How often do you have to have the catheter changed now?

For me, I have it changed every five weeks because I found with my body, about the time of five weeks, it would start to start blocking. So I found that if I change it every five weeks, that’s fine, I don’t get that problem.

And is it changed here at home?

Yes, the continence nurse comes and changes it. My husband also has changed it several times when it has blocked. it’s actually quite easy to do. it’s not painful and it just takes a bit of preparation.

I have a kit that I’ve put together. My emergency catheter change bag, which contains a catheter, gauze swabs, Micropore tape, Steripod with sterile waters that clean me, a spare empty syringe in case the brand of catheter I’m using doesn’t have its own syringe to take the water out of the balloon, a spare bag and flip flow valve.

I can’t remember exactly everything but, for me, it really works to have an emergency bag ready. I keep one in the car and one in my bathroom. So I know that if it blocks, I’ve got everything ready there to be able to do it.

And, as I said, my husband’s done it. He doesn’t find it terribly onerous at all or difficult. Obviously he’d rather he didn’t have to do it. I’d rather he didn’t have to do it but, actually, it can be done pretty easily and painlessly.

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.