What can patients do to try to prevent these infections?

I think the most important thing that patients do is to maintain a high fluid intake. We try and encourage them to drink up to 3 litres of fluid a day. The other interesting point is that they can reduce the risk or encrustation of the catheter if they drink citrates. And that alters the pH at which these crystals come out of solution. And we encourage them to drink a high proportion of citrate with their fluids.

What sort of drinks would those be?

Well things like Lemon Barley and Lemonade and those sort of things will help them.

But not orange?

As long as it contains citrate.

I’m sure I’ve had a lot of advice from different people. And, unfortunately, some of them contradict each other. But I do try to drink quite a lot. I might drink more coffee than I should do, but nevertheless it’s mainly tea that I drink. But I do like coffee at certain times. I don’t drink beer or spirits. I’m more or less teetotal, apart from weddings and funerals. Some people have said that, I can’t think what it is now, something that’s quite good for bladders, but I can’t remember what it is.

Could it be cranberry juice?

Yes.

Do you drink anything like cranberry juice? Or some people have said that they drink water with lemon juice squeezed into it
No, I don’t do anything like that.

What would you say is your usual routine, day to day, in terms of drinking? So a typical day, what kind of fluids do you drink during the day?

Well I get up usually between 7 and half past. I have my breakfast before I get dressed, before I change catheters, in my dressing gown. I make a mug of tea. I have some, I have a dish of cereal and I have a slice of wholemeal bread with marmalade. That’s my daily routine breakfast, except every now and again I have a decent porridge.

Mid morning, I’ll have a coffee, well in the, at breakfast time I may have two mugs of tea, depending on how I feel. Usually only one but sometimes I have two. Mid morning, I’ll have a coffee. Lunchtime, I’ll have a coffee after my lunch.

Just recently I’ve started having a drink of tea in the middle of the afternoon, which I haven’t done before and I don’t know if that’s another bad habit I’m getting into. But I have, I mean I’ve been having that recently. And then at tea time I have tea, a mug of tea and then in the evening I have Horlicks. I have a mug of Horlicks. And, in between, I may have a fruit juice or lemon juice or something like that. A drink of squash.

On the internet I have seen various things which people were using, like lemon juice. Someone recommended lemon juice, so I always used to drink lemon juice. And things like that to avoid it [UTIs].

Everyone, even the carers, nurses and doctors, they always say to drink a lot of fluids. And also try to drink, like most people say try to drink as much as possible of the citric things, because that helps in keeping away UTIs.

One more thing which, in my case, I have discovered is that it depends on how you drink the water. Because in my case, if I drink water from a glass, after drinking one glass I feel that I’m okay. Or, if you start drinking by glass, it’s the count, the psychological count; one glass; two glasses, and you can’t drink much. Whereas in my case, I drink from a bottle. From a bottle, you are drinking and you are not counting. So I always keep a big bottle, not a small bottle. I always keep a big bottle, not a glass.

Try to drink from a bottle because that way I feel that we can drink more instead of drinking from a small glass. Or even if it’s a glass, try to keep a big glass instead of a small glass because, even with one big sip more, it makes a lot of difference in my input. Yes.

So drinking and how you drink is very important.

Yes, how you drink also makes a lot of difference. Drinking is okay, but how you drink, in my opinion, also makes a lot of difference. Because, as I told you, if I drink from a glass, I will drink one or a maximum of two. And instead, if I am thirsty, if you give me a big bottle of one litre, I can drink half a litre just like that.

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. Load of lemons, and then we do them in the machine, get all the pith and all the, you know 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 lemonade 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.

Oh right.

It dramatically just changed, just like that.

I just have to make sure that I don’t drink too much before going out, and that I come to the meeting with an empty leg bag and then I’m okay.

Yes. And in terms of the amount of fluid that you drink every day, were you given much advice on that. Or again,

Not really. I mean I don’t drink enough. I know I don’t. I should drink much more. And that’s a constant worry really. But it’s really, most of my symptoms are due to the fact that I have enough, a high enough fluid intake. And I should, I know I should.

What do you normally drink? Water or juice.

Water and orange juice I drink mostly. A little bit of coffee and a little bit of tea. But mostly water and orange juice.

When I was first in hospital, they used to make me drink cranberry juice all the time cos they said it had some sort of content which made your bladder, the environment of your bladder much more unlikely to be colonised by any bacterial infection. And when I look, I couldn’t, endless glasses of cranberry juice, which was very fattening because it was mostly made of sugar. I looked at the contents on the back of the packet, the carton, and it had very little cranberry in it at all. So I absolutely refused to have that anymore. Cos I could see I was going to get so fat. There I was sitting in a wheelchair unable to move, drinking what was really just syrup, so I don’t advocate that. And it made no difference to my bladder at all.

I mean if cranberry, if whatever it is, whatever component of cranberry is helpful, then I think it needs to be taken in tablet form, which you can actually, I think you can buy.

I haven’t tried to do that and I should probably, cos it might be better than being on Nitrofurantoin, I don’t know. But I don’t, I really don’t believe that cranberry juice is the answer. And that’s fine, that’s my first bit of advice.

And you drink water more than anything?

Water. Yes.

I’m told constantly I don’t drink enough but it seems quite obvious if you’re already half full of fluid you don’t want to put more in there. It seems that’s what I should do.

Do you drink a certain amount of fluid every day?

Not really. I take cranberry juice, which I think the lady [nurse] in the hospital recommended. Yeah, I drink that every morning when I first get up, not just to swallow the pills after taking them. I’m not a cranberry juice fanatic. I think it’s over-rated but anyway it seems to work.

You have one glass of cranberry juice or

Yeah. I think probably I take the odd slug, or I always have a glass in the kitchen there in passing, I’ll have a little drop of that.

Do you drink water as well or lemon juice?

Not enough, I rarely drink water. I should do more often.

Some people have said lemon, fresh lemon juice squeezed into water helps.

It tastes quite nice. Yes, lemon in water does help. I drink a lot of lemonade as well which I think, I can’t see does any good really. But according to one of my sons it’s bad for my teeth. My teeth are in a terrible state.

I was told that I must drink substantial quantities of fluid and, to that end, that cranberry juice was very good for keeping urinary infections at bay. And it was later explained to me that, the description that I found helpful was that cranberry juice puts almost like a silicon lining onto surfaces. And if one imagines that the bugs are like the hooky part of Velcro, and that one’s bladder walls and the pipes are like the fluffy bit, the hooks don’t stick in so well and the bugs get washed through.

I was drinking, at that time, about 7 pints of fluid a day, and that was one third cranberry, and then watered down three quarters of a pint to a quarter. I have subsequently taken to adding two slices of fresh lemon into this, squeezed into every pint, and that combination has reduced my urinary infections very substantially. I also tried at different stages adding different types of cider vinegar to it, but that depends on what flavours you like or don’t like. But that has a similar effect.

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.

I would say that the information you are given is, to say the least, sparse. I think that if you were told recommended amounts to drink, the timing of that.

The timing of drinks?

The timing of drinking through the day and what liquids are better and why. I think that the health service could help itself quite a lot by giving people this information. And also pointing out, giving them, people the incentive to help themselves by pointing out the effects of overuse of antibiotics and the greater probability of infections if one doesn’t do this, and the discomfort that the patient will endure.