The best advice I think I could say is to manage the situation yourself. Try to understand what’s happening and to be not concerned about it. Place an emphasis on hygiene; place an emphasis on monitoring your urine. Just, especially in the beginning, make sure it’s working alright.

But you’ll soon become quite confident of it I think, in that if it is working well. If you get an infection, get it treated quickly. You might be able to get another start as it were, but acidic drinks are a good idea especially if you do get an infection. Get some acidic drinks into you. As I say, I drink six pints a day which might be a lot for some people, but that’s what I do. And do that at the same time as the antibiotics again as well. If, you know, and they can argue who cured you, the antibiotic or your acidic drink, but make life as difficult as possible for the bacteria that have entered the bladder.

So that’s the main advice I’d give is general hygiene, and prevention is much better than a cure. And I think for some bladder infections cure is extremely difficult.

Could you talk about cleaning the catheter site?

Basically, although nurses have said, Well, just wash i, my wife cleans it at least once a day with a saline solution and a single-use cloth.

Just round the site?

Just round the site. So basically it keeps it clean. Any deposits on the pipe or round there are all taken off. And it’s kept clean, you know, at least once a day.

But I, obviously if I shower every day as well, so that I try to keep the site clean from that point of view. So that’s, you know, it’s an infection point, so keeping that clean is very important.

As the consultant who I’ve recently seen says, it’s not necessary to use sterile stuf although, you know, it’s convenient because the saline solution comes in these little tubes which is very convenient to use. But it’s important to keep it clean Get rid of, you know, detritus of, you know, because your body will exude stuff, whatever it’s called, I’m not quite sure.

The one thing I did find that I did have difficulty with having the urethral catheter was because, although my bladder and my bowels decided to stop work on the day that I had my injury, the one thing that I never got any problems with was my monthly menstruation. So I would always have my menstrual cycle and, even when all this happened, I never missed one period.

So, because of having the urethral catheter, my mother to start with and then my carers obviously had to be very careful about when I had my periods on, to make sure that the catheter and the site and everything there, down in that area, was cleaned carefully to avoid any possible infection being introduced that way.

Yes, that must have been quite difficult.

Yes, and although I discussed with my GP about going onto the pill or something like that to try and stop some of the periods, some of the bleeding happening because of some of the side effects of the medication that I could have had at the time, I really didn’t want to sort of introduce anything else into my system. So in a way it was, I decided that it was best just to let nature take its course.

But, as I say, obviously it did sort of introduce into the whole care regime a bit more careful consideration around making sure that everything was kept as hygienic as possible.

Summing up now, thinking in your mind, are you glad that you changed to the suprapubic catheter?

Yes, I think yes, so as I say, from my carers’ perspective it’s a lot easier to cope with. Even from just things, particularly around sort of my period now. You know, whilst I can be in quite a bloody mess, even sort of using tampons because I can’t, because it’s, I don’t get on and off the bed two or three times a day to change the tampons when I’ve got a heavy period, you know I still leak blood onto my continence pads. So whilst my carers still have to clean and make sure hygiene wise that that’s all alright, certainly we don’t have any worries that the catheter itself is getting infected from that. So from that perspective, that helps.

Since you’ve been home, can you say a little bit more about caring for your catheter once you’re at home? Was it very different once you’re at home? And replacing it by the district nurse?

Not too different in that, every day, I would wash around the catheter site with saline solution. I would move the night bag into a day bag. That [the night bag] would be taken off. I think overnight and during the day I’m still very careful that the catheter doesn’t pull. So I make sure there’s plenty of give in the tube on the bed, and then again when it’s attached to my leg I affix it in three places to make sure that injury to the catheter site is minimised because you don’t want the catheter to pull on the site.

So you have special straps that you put round your leg?

Yes, I have two straps that are round the leg bag itself and one that I put higher on my thigh to grip on to it.

What I am having a problem with is the wound has still got a bit of infection and I’m having to go up to the treatment room at my surgery three times a week to have the dressing done. And they’ve tried me on this and tried me on that, and I’m now on Inadine dressings. Having gone through antibiotics and honey as dressings, I’m now on Inadine, which seems to be drying it up. But there’s just a bit of inflammation on the tummywound.

I’ve had antibiotics for my wound infection. And the GP is always wanting to give me more antibiotics for my wound infection, and I am wanting not to have them. So in fact I’ve got some in case of’s. But I’m not taking them.

Yesterday they [carers] suddenly realised that there had been a blister. They didn’t mention it when they were cleaning me in the morning and I can’t see it, I can’t see when they’re cleaning me what goes on down there.

They said, Oh, there’s a hole formed, the blister, the blister has burst and there’s a cavity formed around the hole that the SPC [suprapubic catheter] goes in I said, Well what are you going to do about that Er, well we’ll spray it possibly with, oh, no, no, we’ll put some saline lotion and some Aquacel on, which will fill the hole and put the new dressing on. And we’ll see what happens

But quite often when I’ve gone to the hospital to have it [the catheter] changed, they say, Well this hasn’t been cleaned properly because there’s too much puss around the tube where it comes out of the body Because it often, there’s a yellow emission, which I don’t know whether that’s a sign of an infection or whether it’s just a quirk of my particular case. I don’t know. Obviously everybody is different and reacts slightly differently to even the same catheter.

Do they clean around it every day?

Well, they used not to but more recently I think the hospital wrote to them here and said it must be changed every day.

Cleaned every day?

Yes, the dressing taken off.

Oh, the dressing.

Taken off and around the tube cleaned.