I’ve recently been back to the hospital because of ongoing bladder problems, retaining urine , poor flow ect . In the past I’ve had botox to help with frequency and urgency. It was back in 2017 but I found the procedure very painful and ended up have to use catheters for several months. Now I’m told I need to use them again just morning and evening because of urine retention. I m reluctant because the gp has said she didn’t want to give me low dose antibiotics even though the consultant said I could have them. The continence nurse is writing a letter hopefully she will change her mind . Last time I had constant infections. Michelle and Frazer xx
Hi Michelle. I had the same issue, getting injections from self catheterization. My Continence nurse came to see me and saw where I was struggling with the type of catheter rather than technique and changed them for me. I’ve had no problems since. Avoiding caffeine also helped as my bladder isn’t as irritable. I had a nasty headache for about a week after giving up, so maybe do it slower than I did. I’m not saying this will help you, but maybe it’s worth a chat with your nurse, they know their stuff. Good luck. Cath
They was meant to be INFECTIONS, my spell checker thinks I need help too!!!
Thanks Cath I did read it as infections, but then saw it was injections …it would make you stay cross legged make me wince thinking about it. Which catheters are you using ? I’ve used Lofric in the past but have just tried Curan lady , they look like blue marker pens which Cathy the continence nurse said was ideal it’s a good camouflage, it will make it fun if Naomi and Laura try drawing on Nana’s wall, at least they wont leave any marks. I used one last night and it was easier with less burning sensation, I actually had a good sleep woke again after a good few hours not like normally which can be anything up to ten times needing a wee. Michelle and Frazer xx
I use catheters all the time and had been on low dose antibiotics for a number of years. However my urologist took me off them in January. I was frightened by this as I have had 2 spells in hospital due to urine infections. Once was for a fortnight and I was very, very ill and since then lost a lot of my independence.
I was convinced I was going to get more infections but I haven’t had any. I am always on the lookout for any strange symptoms which may point to an infection but so far I needn’t have worried.
Sarah x
Hi Michelle I use speedicath compact which I find easier than some others cos they are small and easy to hold. The longer ones appear more difficult for me with a tremor trying to hold it still, but I always have to use the mirror as well. My doctor allows me to keep one set of antibiotics at home just in case. Hope it goes well for you, take care. Pam x
Thanks Sarah, I’m scared of getting infections, I felt so ill last time. Cathy the nurse has written a letter asking for them but until they see a letter thet wont give me any. I hope that the letter is enough, they really don’t like giving antibiotics anymore, the daft thing is I have never over used them myself. Michelle and Frazer xx
Thanks Pam, I have a tremor too. I wonder if some are finer in depth than others . Last time I didn’t get much choice. The curan lady doesnt sting as much as the lofric. I hated it last time but it wasn’t just the sting irritation I did develop uti’s. The gp I spoke to said unless I had an infection she wouldn’t give antibiotics but I want to prevent the infection and using Catheters increases our risk . I’m a carer to Molly I cant afford to get ill. Michelle and Frazer xx
It was the neuro who wrote to my gp, perhaps that’s why he didn’t argue the toss.
Pam x
Hi Michelle
Sorry, I’ve not been on for a day or two. I have changed from Lofric Sense catheters to Choloplast SpeediCath Compact. They were more easily handled than the others and burn less. As they’re already attached to the bags, I don’t struggle to assemble them, which is difficult as my coordination has worsened.
Before I changed I spent a week in hospital on a drip as my urine infection had ascended to my kidneys. It was terrible, really painful. I’ve had no problems since but I also go through stages where I sometimes can go a month or more without catheterization and at other times it’s twice a day like you, but at other times I can only empty my bladder with catheters, so it can be six times a day.
I don’t want permanent antibiotics but if I get another infection my gp has said he’d like me to keep a course at home so I could start using them immediately as it only took a day from when I had symptoms to kidney involvement last time.
It’s not a nice thing to have to do but it’s definitely preferable to retention when you just can’t let go. This sounds really personal and you’re probably aware, but just in case your nurse never mentioned it - but we’re you warned that if you accidentally inserted it into your vagina (very easily done when coordination and concentration are affected) you should discard that catheter and use a new one or you could introduce infection? I apologise if that sounds too personal or insulting, but sometimes things aren’t always explained!
Take care.
Cath x
Thanks Cath, I haven’t made that mistake but have dropped it on the floor . Cathy (nurse) said it was very easy to get infections and was not because of lack of hygiene. It’s hard because being a girl we get periods and mine are still very regular even though I’m over 50. I think that adds to the chance of infection too. Thanks for all of your advice . Michelle and Frazer xx
Hello Michelle.
I’ve been using a catheter since last November. I’ve had a few problems but I’ve had a lot of other problems.
I think it’s easier for a man.
Fingers crossed for a resolution.
Woof x
Thanks Steve , its lovely to hear from you , you’ve had plenty of issues haven’t you this is nothing really , I’ll get the hang of it. Frazers not been so good this week hes on meds for itching he has skin allergies, hes been on them for a bit but has developed diarrhoea, I’ve had to make him sleep in the conservatory with a blanket over him, it’s not cold on there but I feel sorry for him , he prefers sleeping on Molly’s bed. I’m going to take home back to the vets today and see what they say . Michelle and Frazer xx
Looks like I’ve become another member of this specialised area of hell.
Started self-catheterization just over a month ago and been on two lots of antibiotics, still on them. It doesn’t matter how much you wash your hands and clean yourself down with antibacterial wipes the infection somehow gets in.
mrbup
Hi mrbup. It might be worth speaking to your Continence nurse and considering changing your catheters if necessary. Some are easier to use than others. It made a difference for me. Some catheters are softer, more rigid, different lubricants. You’ve not been doing it for long yet, you’ll get so used to it and it’ll just become second nature.
Stay positive, I’m sure there are loads of us doing this. Take care
Cath x
Yes Caths right Mrbup, I was on them for the 1st time in 2017 after Botox . Unfortunately the botox worked too well and I wasnt able to wee for a few months. The nurse advising me wasnt very good and I was pretty much left to get on with it. Now I’m beginning to think it might have been partly because the catheters I was using didn’t suit me . Time will tell as I’ve only been using thes a few days but the dont sting as much as the others did . Last time I’d be akept awake with the burning feeling. The burning is different from infection but it’s still not pleasant, it’s a bit like when you get soap in your eyes, but obviously not you’re eyes but in a place just as sensitive. The infections that you get dont wear off like the burning they carry on and you feel as you’re bladder and privates are on fire and you are dying for a wee all the time but struggling to go and it’s hot wee. The Gp that I asked for low dose antibiotics was trying to say that I hadn’t had an infection but it was just catheter irritation, I told her to check my notes as it was definitely an infection. I can understand why they dont like giving out antibiotics but an infection can be dangerous. Michelle and Frazer xx
Thanks for the info. I have tried various catheter types, including Coloplast speedicath flex, Lofic Origo plus a couple from Hunter, aloe Original plus and some that come in a green pen shaped container with and without emergency storage bags, both extend out when opened but without an intermediate sliding plastic ferrule. Impossible to insert unless you have master Jedi tendancies.
Has anybody heard of Ocrelizumab?
Yes, it’s the drug that was licensed for RRMS last year and recently, last month for PPMS. There are several restrictions for PPMS e.g you have to have EDSS 3-6.5, your MS needs to be active and you need to have been diagnosed no more than 15 years ago (but 5 years ago if your less disabled). Look it up on the NICE site.
Thanks for that info Moirah.
Hi, I have been self catheterising for a year now and been lucky not to have got any infection. I use Actreen Mini with the bag attached. Lina