Happy New Year hope it’s a better one. Not sure what type of M.S I have now, after my M,R.I the M.S nurse told me if I wanted to know more ask my G.P. I couldn’t get past receptionist humph! I’ve had a catheter since November and Urologist now says he will change it for supra pubic. He said it would be easy as long as I had no scars, I have a few from bowel cancer says he will still do it - means a bigger op. More risk of sepsis I don’t want that again spent 2 weeks in I.C not expected to survive last time I had it. Is a change really worth it? Got a U.T.I for Christmas couldn’t get out of the chair to go to bed and I have a rota stand. My mobility is useless use a wheelchair a lot is there anything that could help think my time could be up well keep wishing anyway.
have u tried a daily antibiotic? i was against this for several reasons but agreed to try it about 2 months ago after having several consecutive uti’s (not for the first time)
so far no further uti’s!
some folk suggest ms nurse or neuro for advice-i should have listened to my gp as hes never got it wrong before! i am well aware hes not the expert but he listens and seems genuinely interested in my issues and finding a way to help me cope. he is very open at saying that he doesnt know but will get back to me after discussing with others in practise or neuro on my behalf.
we are all different but maybe the daily antibiotic is an option to try?
Thanks Chocorange I hadn’t heard of daily antibiotics have to see about them anything to get rid of UTI. My ms nurse doesn’t help at all, she’s new and just trained. Great name
Hi Lost Angel
I had a supra-pubic catheter fitted about three years ago (I had been self catheterising before that). It’s worked out well for me, much better than doing it myself. It’s made life a lot easier.
Ask ito be referred to a physio who specialises in neuro things. That will help with your mobility & balance etc. It might be worth getting a referral to an Occupational Therapist as well. as thet could take a look a your house to see if there are any aids they could give you, to make things easier. If your MS nurse doesn’t seem able to help, then try your GP instead. But either way, don’t let anyone fob you off. Demand (politely!) the support you need.
i’e been taking a daily anti biotic, or maintenance dose, for almost 12 months. 12 months without a UTI!!
HI i am like chocorange i am given a Trimethoprim 100mg Tablets every night. I have had a break in between i just stop taking them for 2 months and accumulate a few boxes (shhhhhhh). I do it as i dont want to get to used to them. but believe me going from 1 uti to a month to only about 3 a year is a miracle for me. I dont have a catheter though.
i also take a cranbery tablet every morning as instructed by my urologist which helps too. and 1 garlic tablet.
I also buy sterea strips off an online chemist so i can keep an eye on my bladder. quite often i think i have a uti and its normal its because i realise i havent drank enough water or got stressed or overtired. if the strips change colour i then send down a sample and its worked right everytime.
i am still sensitive to trimethroprim so i know so far by dealing with it the way i do i havent become resient too it.
my urologist put me on them years back that is why i now take a little break every now and then. it works out even better as if i do get an infection i dont have to get a prescription as the nurse just tells me to double up.
its bliss isnt it? i have been doing it for too long i think still get a few a year but nothing like 12 as i was.
i would kick and scratch anyone who tried to keep me from the bliss of my trimethoprim!
Are you physically able to self catheterise? Ie get yourself onto the loo, in the right position and have the use of hands sufficient to do it? If so, that could be an answer. Personally, my mobility is pretty dreadful, I use a wheelchair all the time, and my hands are iffy too, but I manage.
I had a constant UTI for the 6 months I had a supra pubic catheter. And all the doctors and nurses could say was ‘well you will have, you’ve got an SPC’!
I had it removed and had no infection for over a year. Damn it all to hell that I’ve had a real humdinger over the last month that’s being a bit of a bugger to shift, but that’s the first since September 2017.
It sounds like an SPC operation would be a bit risky for you if you have scarring.
The trouble with surgeons (imo) is that they automatically reach for a knife to solve every problem. And there might be a way to resolve things without a knife.
i couldnt remember the proper words when i replied originally! search prophylactic antibiotics for uti as that brings up good info.
trimethoprim doesnt work for me even though when its tested at lab it should. nitrofuratoin nightly for me. there are several available to try.
you say your ms nurse is new-an opportunity for you to educate her!
i agree with ellie, your new nurse should be willing to learn at every opportunity.
so explain how bad the UTIs make you feel and the reason why you don’t want a SPC.
I was Dx…d 2012 with this dreaded MS …have now morphed into secondary stage (SPMS) My legs are almost useless so I use wheelchair/scooters for transportation. I had a SPC fitted early 2018 & just use a Flip-Flo without Legbag…which seems to be ok. I have NOT had any UTIs thankfully! I have Trimethoprim on standby or Nitrofurantoin.
I’m contemplating a Baclofen Pump. Any advice/experiences would be appreciated?
Thanks everyone for your replies. I see the urologist later this month so I have more to ask. Been taking trimethoprim for a few months but let me down now. I can’t do the catheter myself so have one full time. I keep saying the nurse is new probably been m.s for about 9 months don’t think she’s learned anything doesn’t answer phone calls or messages. This uti has really hit me hard taken everything from me and left me weak as a kitten, sooner I can get rid of it the better,