Self catheterise or not?

Everyday living
1

Hi everyone, hope you’re doing ok

I’ve been using catheters for a few years now and I wonder if anyone thinks that using catheters can give you more infections than they’re worth.

This year I’ve been so careful (well I think I am) with cleanliness but still keep getting infections. I’ve had so many doses of antibiotics lately that the doctors have advised i go on a mild one all of the time. I’m not happy about this but I suppose it’s better than having high doses of antibiotics. Nearly ended up in hospital last month the infection was so fierce. I’m seriously wondering if I’d be better off without them (My former Neuro said I should use them first thing in the morning and evening. Just wondering what you’all think about this.

Wendy xx

PS cranberry pills seem to be helping at the moment.

2

Hello

I have been doing ISC for about 8 years. I’ve only ever had two serious infections and they were nasty and I ended up in hospital. I suspect they were caused by the type of catheter I was using. I have also had a couple of minor infections that did not cause me any trouble.

To my mind ISC is definitely worth while, it has allowed me to have much improved quality of lifeI.

​ admit that a blokes plumbing is different and infections are much less likely to occur.

Patrick

3

Hello Patrick

Thank you for the reply, you have done well, I know a chap who is in the same boat as me and is waiting to hear about Botox.Maybe I’ll persevere with it, I seem to go through phases, I hardly have any for a while but at the moment it’s particularly bad, as I said in my last post, Cranberry capsules seem to be helping.

Wendy x

4

Hi Wendy

It’s possible that you need to be doing it more often, to ensure that your bladder is fully emptied more than twice a day. I wouldn’t recommend stopping it, as never fully emptying your bladder would probably make things worse. Another option to consider is having a suprapubic catheter fitted instead. And out of interest, I don’t suppose you’re on Tysabri? I know that can sometimes make it more likely to get recurrent infections.

It would be worth cutting down on things like caffeine or artificial sweeteners, as they irritate the bladder. Having a daily low dose antibiotic is another option. But when you do take antibiotics, take a probiotic as well. Antibiotics kill the good bacteria inside you as well as the bad, so the good ones need to be replaced.

Hope you get it sorted soon though.

Dan

5

Had the same problem of recurrent UTIs doing ISC after botox. Reluctant now to consider a further round of botox. One thought that weighs on my mind is the widely reported concern that apparently we are likely to run out of effective antibiotics if current trends in antibiotic resistence continue. What then for people who use catheters?

6

Before I had Botox I was getting infections all the time and was repeatedly on courses of antibiotics. Since then I have catheterised 5 or 6 times a day (I can still pass urine normally but was advised to do it all the time to avoid straining and ensure I was completely empty)

Around the same time I also started on a low dose antibiotic permanently, I just take 1 at night. We rotate the type every 3 months to avoid becoming resistant to any of them.

I consider the Botox to be brilliant. I’m going for my 2nd treatment on Friday although I’m not looking forward to this one as it’s by local anaesthetic. The 1st one, a few days before Christmas was by a general and I didn’t know anything about it!

Sarah x

7

Hi everyone, thanks for your replies, Hefunk, I’ve just looked up ‘foods that are likely to irritate infections in bladder’, low and behold I found honey was on the list, as well as tomatoes and oranges, I eat lots of honey as an alternative sweetener which I don’t need, so I’m cutting right back on my honey intake.

Mr Bobowen, I agree I very rarely had any antibiotics before ms got worse and do worry that they may not work when I need them.

Sarah I’m glad for you that Botox is working ok, my problems are more to do with despararately needing to go, then sitting there waiting for bladder to release, I think it’s to do with lots of Amitriptyline as well as other drugs.

I will seriously think about taking a low dose at night. It’s got to be better than lots of strong ones.

There’s some good news, I’ve managed to halt this most recent infection by taking cranberry capsules 3 times a day and it’s working.

Take care all of you,

Wendy x

8

Hi Wendy

I self catheterise for a similar reason to you I think, because I can’t make the external sphincter start to go, this means I’m using a catheter most times I use the loo, it’s not just to completely empty, but to start in the first place. This means that I don’t have a residue of urine sitting in the bladder, so (as far as I understand it), I don’t get a UTI because or lack of emptying, it has to be due to the introduction of bacteria.

I think this is the reason why I tend to get infections when I’m on holiday or using toilets away from home so the whole mechanics of catheterising is different. And I have had an infection every time I’ve been on holiday for the last few years. Last time I was away I used d-mannose for about a month, a week before I went, while I was away, and when I came home and I didn’t get a UTI. It may be pure chance, or maybe not? Some people swear by d-mannose and reckon it’s the reason they don’t get infections. I think it’s like a super concentrated sugar which is also found in cranberries. It might be worth a try. The blurb about it says it creates an environment in which bacteria cannot thrive.

I was also wondering whether it might be worth you trying a different brand of catheter; maybe one that is more flexible, or less flexible, or with a different type of handle, so your hand is closer or further from the bit that goes into the urethra.

Or, you could use a catheter more frequently, so there is definitely no residue sitting in your bladder. Do you manage to do it just sitting on the loo or do you have to use a mirror. I used to do it twice a day but gradually it’s become so I do it most times, if you are getting infections because of a residue then emptying completely more often might help? To do it as often as I do, I think you have to be able to do it fairly well just sitting on the loo. Otherwise it would take forever. I did ask my local bowel and bladder nurse and she said it isn’t a problem using a catheter as frequently as I do (maybe 6 times a day).

Failing all of this, you could try the antibiotics, I think I’d feel much like you, not wanting to be on them all the time, but if you try everything else and still get the UTIs, give it a go.

I definitely wouldn’t give up the catheters though. It maybe that you’d get just as many infections because of failing to empty your bladder so you’d be in the same boat.

Sue

1 Like
9

Hi Sue

I do feel for you as I am able to go - eventually, I take it that you are using a different style to me as I’ve had no luck with it sitting down. I use the speedicath compact.

I only use them in my own loo, as I can see how things could go radically wrong in a public loo. You’ve given me an idea, perhaps I’ll go back to using a mirror and I’ll look into d-mannose,cranberry seems to be doing the trick at the moment.

Thank you for your reply, you’ve given me some ideas.

Wendy x

10

I use Speedicath compact too nowadays. I suspect I was lucky that the first time I tried to use a catheter sitting on the loo it worked perfectly first time. That then gave me the confidence to carry on, even though at first I went through quite a lot of catheters. I started with Actreen lite mini, which is small and very firm. It means that when you are aiming there’s pretty much no ‘bend’ in the catheter so it might make it easier to get used to doing it without being able to see what you’re doing. There’s then less chance of it slipping. Hopefully you’ll get it sorted and stop getting the UTIs. Touch wood, I haven’t had one for six months or so.

Sue

11

Hi again,

I have given up caffeine and drink slightly less than before. Giving up caffeine has reduced urgency in a big way but I used to drink a lot of tea and strong coffee. I do ISC about 4 - 5 times a day and always ensure thas I empty my bladder.

Patrick

12

Yes touch wood Sue

W x

13

Thanks Patrick

I drink Rooibos tea these days, didn’t like it at first but now I love the stuff. It’s a non diuretic and is caffeine free, always take a few bags with me when I go out, accept the odd cafe visit when I drink their fruit tea.

W x

14

l love Roobos /Redbush Tea as well - didn’t like it at first - now cannot drink any other type. And D-Mannose - is brilliant at keeping your bladder healthier. So is drinking apple cider vinegar in water. D-Mannose is the very concentrated form of the part of cranberry that helps the bladder. And of course pro-biotics.

Silver tipped caths also prevent uti’s.