One of the most common complications with a long term catheter is recurrent blockage of the catheter.

Now this is in an interesting problem because there are certain bacteria, particularly one known as proteus mirabilis which contains an enzyme termed urease. Now urea is the end product of protein metabolism in the body and urease hydrolyses urea to form ammonia.

Under these circumstances the acidity, the pH of urine rises from about, normally about 7 and it rises up to 7.3, 7.5 even 7.8 and as the pH rises so the phosphates in the urine come out as solution and they form crystals. Calcium hydroxyapatite and calcium struvite crystals are formed on the catheter and within the catheter, and this blocks the catheter and the drainage. And so recurrent blockage with proteus infections is a major problem for the patient.

Blocking of catheters and by-passing of urine around the catheter as a result of blockages are the most common complications and they keep the district nurses really quite busy. 4% of the district nurses duty, so to speak, is spent dealing with catheters and that’s quite a high percentage for just one problem.

Have you ever had a blocked catheter?

Never.

Good.

Specifically because I drink so much. I wash it through. I will talk about my recent situation in a minute because there’s a story behind it. But, no, in the past I haven’t had a blocked catheter. Yes, and it’s great because I haven’t had to do one of the flush-outs [bladder washouts] or anything like that. I think that’s, and it’s totally down to drinking.

But the friend I was telling you about who died in the last year who had MS didn’t drink enough. He regularly had blocked catheters and would have, you know, blue flashing light jobs to hospital because he needed to be unblocked. So, water, drink lots of water.

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.

Everything went fine probably for two and a half or three years. I had very good care. I changed catheters every twelve weeks, on the day and there was never any consideration of doing different. I was obviously free from infection of any kind for two and a half to three years, and that was a period of good care.

Then I had to change my care system. I simply couldn’t afford to pay for my own care all the time. Which I’ve not, because I had been given supplemented, a little bit for four or five years, but I’d been paying the full amount basically. And as my business had stopped, I couldn’t afford to do it anymore.

I then went onto local authority care, so there was no continuity of care. The standard is very low in terms of hygiene and, within six weeks, I started to get blockages. The first time it happened I had no idea what had happened. I just knew I needed a nurse very quickly cos it hurt, you know, headaches and so on.

Then I went, just got worse and worse and worse. So then I was having catheters changed every week, every two days. And it got so that the situation became untenable. I did have acetic acid bladder washes, a series of six for six weeks, and that did work. And that demonstrates that perhaps what the nature of the infection was I think.

This period of care ended in November of that year which was about eight months, nine months, and that basically nearly killed me. I ended up with a twelve-hour blockage of the catheter. And because I was unattended overnight, all I can say about that is I don’t recommend it to anybody. And secondly, apparently it’s not enough to kill you but my God it feels like it. And I think such events do leave you a bit mentally scarred, you know I had to fight pretty hard to get rid of the nervousness it might cause.

The next day I started, through the National Health Service continuing care, to have a full time live-in carer. And that’s why it lasted nine months because it took so long to get approved and so on. Immediately we were able to think sensibly about the situation and the situation improved. It did take eighteen months, and now we’re in about 2009/2010, 2009 actually. It took, generally speaking, bearing in mind a twelve hour blockage causes problems for kidneys, bladder, everything in that area. And it took about 18 months to get back to some sort of normality.

Do you ever have to wash the bladder out with anything?

Yes, occasionally I wash the bladder out. Certainly if there was any sign of minor blockage, a bladder washout would be used. Recently I haven’t had too many problems with that. But I certainly did have one or two occasions in hospital when the catheter did actually block, would have to be removed and a new catheter inserted because of debris in the bladder.

How did you know that? Did somebody realise there was nothing draining?

It was realised nothing was draining on one occasion. Another occasion I suffered autonomic dysreflexia, which is your blood pressure rising and severe headaches. Which is the body’s way, in the case of spinal cord injuries, telling you that there’s a pain or, in the case of like a bladder issue, a blockage, that your bladder’s not draining. So it’s the body’s way of sort of telling you that, although you can’t have the sensation of the bladder filling up, it’s an indication that something is wrong.

Can you remember what that was like?

Yes, it’s a splitting headache at the front of your head, sweating and generally feeling very unwell.

So somebody had to come and change the catheter fairly quickly?

Yes, you have to change the catheter very quickly.

Did you have to go back to theatre for that or did they do it at the bedside?

No, that was done at the bedside. After the insertion of the suprapubic catheter, I didn’t go back to a theatre for any changes or anything beyond that. It was always done at the bedside.

It was blocking quite a lot and I’d need the nurse to come out sometimes, this is probably about perhaps looking three, four years ago, sometimes blocking every two weeks. So we tried lots of things to help it but nothing seemed to work. And then they put me on catheter maintenance solutions, these CBG and Solutio R, and I’ve been having those during, when the nurses come and visit and yeah that’s sorted all the blockages out. And now it can go ten or twelve weeks before I need a change, so that’s helped a lot.

Yes. That’s very good. How often did it need changing before that? Before those solutions?

Sometimes it was every two weeks it would block, sometimes less.

Can you tell me a bit about the solutions for anybody who might want to know more about them?

Yes. I think they are solutions which are slightly citric. Solutio R’s got more in it that the CBG. And they’re attached to the catheter and drain through just to clear the crust, the crystals that form inside the catheter and at the tip as well. And yes they’ve got like two sections, you run one in and out and then the other one in and out. And it keeps it clear and running and it’s really worked for me.

Quite recently, I had a visit from a nurse clinical specialist, which was just the other week to talk things through about the catheter. Yeah and she’s coming back again in December so yeah, that’s been good, yeah.

What kinds of things is she, you know, hoping to work with you on, or to improve?

Just, cos I haven’t seen her before, we just talked how things were going and we talked about the catheter maintenance solutions and perhaps reducing their use, since they’re doing the job.

So, as they’re doing their job, reduce the amount you use?

Yes. Cos it’s all putting things in your body and, if you don’t need them to be there, if they’re working. Cos I used to have them used to test the PH of the urine. And, if it was a certain alkalinity, then I would have a catheter solution, sometimes that was three times a week. And then the nurse specialist who came said, Well sometimes its not that reliable testing the pH. So sometimes I was having the wash outs three times a week, but I’ve gone down to two at the moment, and possibly down to one if it’s working.

Usually you used to have the catheter changed every fourteen weeks?

That was the hope but, after a while, after you’ve had one change, it was the next change ten days, and ten weeks sorry and then it gets shorter and shorter.

And now what would be the average now?

But I get, I don’t know it’s a bit difficult, it’s just happenstance, and it’s a bit awkward I feel. I would love them to say, Well we’ll come and do it again in nine weeks’ time But I have to call them out every time now. it’s not as if they can put me on a rota and see when it’s going to be, it’s on the 10th February or something,

So you call them out now?

Well that seems to have happened all the time yes.

Because there was no fluid

Yes. That is invariably the cause of the blockage. I think it’s the lady [district nurse] who came this week said, I’ve got these little flush things, I’ll justrdquo; they’re files of water in plastic tubes and it never works.

Right. So

I always do them. Try and wash it out. Nothing happens. And it doesn’t seem to be the result of say I’ve been drinking too much orange squash or something. Cos it always just seems to be no way I can correct it as it were.

It just gets blocked?

It just happens, yes.

I then found that, because of the volume of fluid that I was taking, I was diminishing my salt levels. So I was told to cut back on my consumption to nearer to five pints of cranberry a day. I did that, but found that there was greater sediment forming in both the catheter and the leg bag pipe. So I decided to use a pipe cleaner to clean my catheter on a weekly basis, when I changed the leg bag, which I do once a week.

My thinking on this was from my background being a builder. It seemed strange that you’ve got a fairly large bore pipe of the leg bag and the smallest one, namely the catheter, you didn’t rod. You rodded the larger pipe, but the blockage is likely to occur in the small one. So, if everything is passing through the catheter to get to the leg bag, why do I need to change the leg bag and not the catheter?

So I got the longest pipe cleaners I could, but they were about shorter than the catheter itself. I would sterilise them in an antiseptic solution and just insert them, or get my carer to insert them down the pipe and throw them away. And this would immediately give you a clear pipe instead of it being opaque.

I have just very recently managed to find a pipe cleaner manufacturer who will do them to whatever length I require. And so I have now, I do the shorter one first to remove the residue from the majority of the pipe. And there was an anxiety that if I got a full length one, it could push a pellet of sediment into my bladder. In order to check whether that was happening and whether I was forming any stones, I was given a cystoscopy on a couple of occasions and it was found this was not happening. And the pipe cleaner seems to have very effectively taken away, not just push down the line.

But I would say, from my own circumstances, I’ve gone with my various activities from being re-catheterised three or four weekly to now going the full twelve weeks, which has increased incrementally. It went from three or four to six, to eight then up to twelve. At twelve weeks, that is the extent of the warranty of the catheter. But I have done a trial whilst in hospital and took it up to seventeen weeks without any problem whatsoever, which I would definitely not be able to do without cleaning the catheter out on a weekly basis.

With the pipe cleaner because, by the end of a week, both the inside wall of the catheter and the leg bag have gone cloudy at best, or near to opaque, depending on the amount you’re drinking and what your state of health is. And if that keeps building up, obviously it’s only a matter of time before you get a blockage.

I drink religiously three or four litres a day. A lot more water since I had this terrible kidney infection. Now about ten years ago, eight/ten years ago, my catheters were, first of all when I had my [spinal cord] injury, my catheters weren’t getting blocked up. I could, I think the longest catheter I had in was for eleven weeks.

Right

Which, you know, is okay. If it’s not doing any harm, it’ll be alright. And then they started getting blocked up and I think that was due to the bone, when you sit down and it’s, what is it, osteoporosis is it? That kind of thing, and I was getting certain infections. And I’d read in the SI [spinal injury] magazine, in various places, that people that are on a high citric drink were getting good results and the catheter wasn’t blocked up. But they never actually said go and buy a load of vegetables, lemons and grapefruits, oranges, and mush them all up, so it wasn’t very helpful.

Anyway, a couple of years I came up with a very simple format, 100ml of pure lemon juice that we get a bunch of lemons. Bunch of lemons? Load of lemons, and then we do them in the machine, get all the pith and all that kind of meaty bits out, no pips, and then we put 100ml for every 900ml of liquid.

Of water?

Water or, I don’t know, use a little bit of lemon to make it a little bit sweeter, otherwise it is very sour. But once in the morning and once at night. First thing in the morning, last thing at night, and my catheters have gone to I think the longest now is fifteen weeks.

Can you tell me a little bit about some of the problems that you’ve had with the catheter?

Yes. The problems with the catheter is, I have experiences that some of the times it blocks very quickly. And there’s no guarantee that if you drink more or if you drink less, then it won’t block. There is no certain formula for it that, if you do this it’s not going to block. I have tried various different kinds of lifestyle, like drinking less or drinking more of the lemon or drinking more of the cranberry juice, this, that and the other. But I didn’t find anything which can ensure that your catheter is not going to block. It just blocks.

It can block any time, that’s the biggest problem actually. It can block now, it can block within half an hour. It can block in the day and it can block in the middle of the night. And the problem is, once it’s blocked, you have to handle it immediately because it can cause, it’s kind of an emergency situation and it can cause [autonomic dysreflexia], give you a stroke or anything can happen because the blood pressure shoots so quickly and that creates a very big problem.

And how often would you say that it get blocks?

In my case, I don’t get blocks very quickly but, as I said, it can block any time, you know.

Yes. And what’s the first thing that you notice when it’s blocked, what’s the first thing that you notice that lets you know.

Oh it depends from person to person. As far as I know, I have read about it specifically in spinal injury cases, if it blocks you get autonomic dysreflexia, due to which your blood pressure goes up and you get a headache, sweating, shivering and those kinds of symptoms.

I don’t know about how and what happens in people who are not spinally injured but are still dependent on their catheters. In my case I just seem to know. I just get a really severe headache and that headache is like, I tell you it’s like, it feels like your head is going to blow up at any time, you know.