Hi my mum has MS she is 67 and diagnosed 5 years ago. Last June she was admitted to hospital with severe urine infection. Since then she has suffered ongoing bladder problems, she has also had a catheter since her admittance to hospital but not prior to that. She hasn’t walked in 8 months either but could walk with a stick before. It’s has been an extremely worrying time for us all and we can’t see an end to it. Just wondered if anyone else out there had experienced anything similar. Thanks
i’m 54 but i’ve been plagued with bladder infections for the last 3 months.
nurse is putting me on patches for my overactive bladder.
these infections are nasty but sometimes the meds are nasty too.
my friend (who doesnt have ms) had cystitis and was prescribed trimethoprim but she had an anaphylactic shock!
however 8 months is a very long time. is she being seen by a specialist such as urologist?
have you been given any idea as to when she is likely to be discharged?
if so, does she self catheterise? is it something you could help with?
i’m sending my love and good wishes for a speedy recovery
Hi lou I suffered with 8months of continual uti’s last year. I was on endless antibiotics until I eventually saw a urologist who immediately found I had a bladder stone. He said I would never have been clear of infections as it sticks to the stone! He removed it and all seems ok although I now have a permanent indwelling catheter as I no longer can self catheterise. Has your mum seen a urologist? If not she must. I do hope she gets sorted and soon as constant infections are extremely fatiguing. Let us know what happens. Linda x
I very much doubt this is the case with your mum (partly because MS protects against cancer to a certain extent) but wanted to tell you the horrible story of my mum, just in case. She got continual bladder infections, in the four months running up to her 70th birthday. She kept having antibiotics but as soon as she finished a course, she would get another infection. It turned out she had a cancerouos tumour in her bladder. She had the tumour removed on her 70th birthday. She should have had her bladder taken out but didn’t want to and was badly advised. Taking the tumour out was like pruning a plant - it grew back with renewed vigour and she got secondaries everywhere and died six months later.
Like I say, I would not think this is the same for your mum - presumably they’ve scanned her and so on in hospital - my mum only saw her GP until it was too late. But just in case, you might ask them what they’ve looked for.
Hi all. Thanks very much for your replies. My mum has an appointment with the urologist in a couple of weeks god knows why that hasn’t been sorted sooner but we’ve been fighting all the way for her. She’s had so many antibiotics that she’s has c dif twice now it’s ridiculous but hopefully we will get her home soon xx
Your poor mum - l am nearly your mums age and have had spms for 30yrs. 18yrs ago l had a supra-pubic catheter fitted and have had only a few uti’s since. Before l was always getting them. l have been talking to a ms friend this morning - and she asked me if l had heard of Estriol - [just google Estriol MS for info] not only is it recommended as a first line treatment for ms as it repairs and safeguards nerves - but it also helps with bladder infections [along with vitd3]. Estriol is a mild form of HRT - and unlike other hrt’s there is no risk of cancer/cardiac problems.
l have recently been taking Chlorella - and when l looked into Estriol l found that Chlorella does contain it.
My elderly neighbour kept getting uti’s - she eventually was prescribed HRT - as it prevents your skin from drying/wrinkling and the urologist said this was the cause of her uti’s. The bladder wall was dry and wrinkly and a easy target for infections. She is now 87 and still taking it!!! And more importantly had no trouble since taking it.
Hope this helps her
Hi, did your mum suffer with ms like symptoms for a long time, before she got her diagnosis? Yes, I agree, being in hospital so long probably has caused her to become immobile. Maybe the ward staff havent given her much time and left her lying in bed for unnecessarily long periods.
Poor lass, are you trying to get her home?
Things have moved on a bit for my mum. She’s till in hospital but has now been seen by a urologist who thinks by fitting the supra pubic catheter will help reduce the risk of infection. We are trying to hurry this along as she is infection free at the moment. We have had to decide for her to have that procedure for her just hope it’s the right one but we are willing to do all we can to keep that nasty bug away!
l hope things improve for your mum after she has had the spc. Hopefully, the hospital will give her some neuro/physio to try to get her mobility better. lt is no good for us to be kept in bed. One step at a time though - lets hope the bladder problem is solved. The spc will make it easier for her and the nurses to keep her more comfortable and at least ‘dry’.
Best wishes to you both.
Hi Linda, just tried to pm you, but my message was blocked…???
Just wondered how you were doing with the catheter? Do you still get uti`s? I had an in dwelling cath but had awful problems.
How are you doing with your`s?
Well my mum is finally having the supra pubic catheter fitted on Monday after nearly ten months in hospital and suffering countless urine infections. The urologist said that it might not work but usually does, even if she does suffer utis every now and again it’s got to be better than every three weeks.
As someone who has had a spc for many years - l very rarely get a uti - its possibly a year since the last one - and usually two days of anti-biotics puts a stop to it. Recently, l have heard lots of good reviews on a supplement called D-Mannose - which is highly recommended by folk - who like your mum - get persistant uti’s that AB’s do not seem to clear up. lts worth googling it and read the comments. l have bought some from amazon - and will start taking them the two days before the next catheter change -and two days after. D-mannose is the part in cranberries that is supposed to help keep the bladder healthy and stop any bacteria infection clinging to the bladder. D-mannose is in a concentrated form. You would have to drink a lot of cranberry juice to get the same effect. And lots of folk do not like cranberry.
Do hope your mums health improves soon - and l am sure the spc will be the answer.
Thanks yes I’ve heard of D-mannose I will have to get her some, she hates cranberry juice so that should perhaps be better. It’s nice to know that you’ve had no problems with he spc we are really hoping this will be the right result we’ve been waiting so long for. Louise x
I have a spc and I take a crandberry capsule one a day and it stopped my frequent UTI’s. Might be worth a try and no taste I hope you Mum gets sorted soon.
I tend to get cystitis-like systems, but I don’t get infections and after doing some research, diagnosed myself with Interstitial Cystitis (IC). That’s where the mucus lining of the bladder has been worn away, exposing the nerves in the bladder wall. Certain foods cause the bladder to sting, a bit like getting lemon juice in a cut. What causes it isn’t known, but some think it’s catheters. I had a catheter during the caesarean with my 2nd child, but also during that pregnancy I was very ill and the only thing I could keep down was Coca Cola. I think all the citric acid damaged the lining of my bladder. I saw a Urologist last year and he couldn’tt help. Both my GP and MS Nurse wanted to put me on long-term antibiotics and have me use a catheter, which I refused. After a year of self-treating, I’ve put on a stone and been able to reintroduce various foods again. I really sympathise with your Mum. Bladder problems make you feel rubbish and have knock-on effects to the rest of your health. I hope she feels better soon.
My mum had the SPC fitted three weeks ago and all was okay until yesterday. She’s in a nursing home for rehabillitation and the nurses put a day bag on her leg while she did physio. They put her back to bed in the afternoon with her knees raised (she needs to be in that position because her legs bend underneath her due to not walking for nearly a year). The catheter then started bypassing and she was passing urine normally aswell as in the bag. We think that because her knees were raised the urine was struggling to go uphill and get into the bag. We pointed this out to the nurses because we panicked fearing that the catheter was blocked which could cause another UTI, they then put a nightbag on so it drained downwards. She seems okay and the catheter has not bypassed again. Hopefully it won’t happen again.
Hi Louise I hope they get the drainage sorted out. I had my SPC fitted a week ago and I’m draining into leg bag at mo but hope to change to valve next week. My dread is that I will bypass and leak urine from urethera! Fingers crossed. Hope your mum is comfortable? Linda x
Hi Linda they’ve sorted my mums drainage problem out by putting a night bag on when she’s in bed and day bag when she’s out of bed, seems to be working ok for her now. I hope your spc works for you. Louise x
Good to hear she’s sorted. Sara x
I am also glad to hear things are getting better for your mum.
I am looking into having an spc too. Quite a few of us around, eh?