Hi folks
I am upset and frustrated (mainly cause that’s how I get when I’m having an infection). I’ve decided that using catheters is not for me but will continue taking D-Mannose as it seems to have settled the bladder but alas hasn’t helped rid me of infection, so off to docs for more antibiotics.
I guess we’re all different, you have to do what works for you with this ms thing.
Wendy xx
I had constant infections with both self catheter and indwelling catheter but in the last two years since having supra pubic catheter I can count infections on one hand. I have been on antibiotics three times.
Don
l have had my SPC - Supra-pubic catheter 20yrs now. At the time Botox was not an option. But even with botox - most people need to self-cath. And of course it is the ‘getting to a loo’ in time as well. With a SPC - it is very convenient and easy to empty when you need to. lts what US girls envied the boys being able to do. Yes, l leave the toilet seat up!!! Occasionally, l do get an infection - l think it is about 2yrs ago.
Biotin helps with bladder control - many people in the facebook group are thrilled that they can go all through the night without having to get out of bed. So worth taking it just for that.
Thank you for your replies and spacejacket I’ll look into Biotin, D- Mannose calms the bladder but I still have several trips to the loo at night. (Also the dose that I’m taking is pretty expensive).
Thanks again all of you,
What will you do instead? I`m wondering how else you will empty your bladder hun.
My spc is well behaved usually but you need to look after it.
pollx
Hi Polly,
Thanks for the message and I hope you and yours are doing ok
I’m actually bending forward every time I empty my bladder, thus emptying from a different angle; I was given this advice by continence nurse as well as ms nurse. We’ll be taking a urine test a few days after I finish last lot of antibiotics, if all is clear I’ll start taking D-Mannose and see what happens. If I still get infections I’ll have to go back to self catheterisation. I’ve got to give it a try. I don’t want to spend the summer with UTIs like last year.
Take care
Wendy x
Ive got a superpubic catheter and have botox approx every six months,ive had them both about four years with only a few problems.Keep trying things till you get things that suit you.I know its a nightmare sometimes.Jo x
Thanks Jo
Hiya.
Ah, I know I’m a fella but I was in your position and understand. I did not have infections before ISC but I was retaining urine in the bladder after the good old bladder scan. I tried ISC in 2013 and for the year I had 8 infections, which was then treated with antibiotics.
So for the past 2 and half years I have not done ISC and have used the ‘bend forward bum out’ technique. I have not had any problems or infections. Hurray!
Yes everyone is different and it is trying to final something that works for you.
Just my little old experience.
Take care,
Marty
Hi everyone, I’ve had many problems with catheters, but infections is the least of them, I was recommended by my nurse to have a glass of cranberry juice, and a super strength cranberry tablet each day seems to help, might be worth a try for those that keep getting UTI. All the best Deborah
Thanks Deborah and Marty
I agree with you both, I’m continuing with D-Mannose which is a high concentrate natural sugar but I might just change to drinking cranberry juice instead.
Wendy x
Hi Wendy,
I no longer self catheterize, not because of infections but because it didn’t really help, even though I retain urine. I was told also about the leaning thing and also patting your tummy in the bladder area can help but the best thing I’ve found to get rid of any retained urine is to blow my nose really hard! Odd I know but it works for me!
What I wanted to tell you is not to be too hasty in assuming it’s due to the catheter…I get water infections like they are going out of fashion! I think I’ve had one a month so far this year! I drink loads of water, I’ve even had a bidet fitted but all to no avail.
sorry that’s not awfully positive…hope you gat some relief soon,
Take care,
Nina X
Thanks Nina, we will see what happens. I have been told by a continence nurse that emptying the bladder at least last thing at night can help prevent problems to kidneys in the long term.
I can’t think that the infections I’m having can be helping the kidneys either.
Wendy x
Hi Wendy. I use ISC as I get retention now and again but I’ve cut caffeine out and find I go into retention a lot less often. I’m amazed at the change that made as I drink a lot of tea!! Keeping my bowels empty helps too, I now take linseed every day. My incontinence nurse also changed my catheters as I had separate catheters and bags, but now use a closed system so less fiddling with the equipment. And yes the position you’re adopting makes it easier too.
We’re all different and I know my body seems to act differently at times too. The nurses are worth their weight in gold. Good luck with it.
Cath x
Hi Cath
Thanks for the reply. I’ve cut out caffeine too and yes ordinary tea and coffee go straight through you. I also take linseeds in my porridge every day. I’ve been emptying my bladder by sticking my bum out and it does seem to work.
I’ve finished antibiotics now and feel a lot better, but we took a urine test this morning and oh dear it looks like the infection hasn’t gone away. So back to the docs for more antibiotics and I think I’ll cut out the probiotics until I’ve finished the course.
Wendy x
Do you take any meds for your bladder?
I started taking Betmiga a couple of months back and it really seems to have helped. Relaxing the bladder is not what I imagined. When I get up in the morning and pee, despite whatever I try I just know I’m not fully emptying but about an hour or so after taking the pill, I go again and it’s a different story!
I try to drink plenty of water and have d.mannose if needed but all seems ok. I went to a pub yesterday afternoon, where we’d all gone to after a funeral at the beginning of the year. I remember then having to go 4 or 5 times during a couple of hours, it was horrible. Yesterday I went once after a couple of drinks and didn’t need to rush to the bathroom when I got home.
Hope the infection’s gone
Sonia x
Thank you for the reply Sonia, well it seems that I don’t have an infection after all, despite having 3 days supply of antibiotics. I suppose it could be all part of not using a catheter. I do drink lots of water and am back taking D-Mannose but will be drinking cranberry juice when I get back to shopping regularly (visiting dad in hospital at the moment) and if I continue to have accidents I will speak to my ms nurse about Betmiga.
Wendy x
your tip on sticking your bottom out is working quite well for me, plus I look less stupid that leaning sideways, slack-jawed, trying so hard to relax
Sonia x