Is there a connection between frequent UTI's and... - Ataxia UK

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Is there a connection between frequent UTI's and CA? Or, between IVIg and UTI's? Neta

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neta
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Lanarkian profile image
Lanarkian

Hi,

Since I have had ataxic symptoms I have had frequent UTIs and a number of emergency admissions to the local general hospital because of these UTIs. In some instances the medicine being used to treat my UTI caused the problems I needed hospital care for.

My incontinence started at the same time at the ataxic symptoms. No doctor has explained any link between the two.

What I do know is that six years down the line since my ataxia first showed these UTI and incontinence issues are slowly and steadily worsening. Unfortunately I have become very sensitive to many of the antibiotic treatments and the next solution will be IV treatment in hospital for UTIs..

However, I have supportive care from the local incontinence nurses and daily showers with help from home support workers arranged through the local social work services. These help considerably. I manage with pads as catheterisation caused too many problems, and I cannot manage to empty the bag independently.

By planning times for travelling and including plenty of stops for the loo I get out and about quite well. Spare clothes are essential but I soon settled in to a pattern of managing. Some days are easy and other more tricky. But, hey ho I do things that I want to most of the time.

I will be interested to hear about the experiences of others with ataxic symptoms.

Best wishes

Lanarkian

neta profile image
neta in reply to Lanarkian

Interesting response. I always had UTI's but their frequency has increased dramatically recently. I alternate between anti-botics CIPRO and ZINNIT however my GP thinks it's connected to the CA. I have never gone to a hospital!! GP says I should ask my neurologist for this medication "bal....something" which is normally given to MS patients with UTI's though I do not have MS!!!!. Still, he says reinfection can come from some leakage. Your frequent showers are interesting. In NYC, I bought feminine wipes with the idea of cleanliness in mind. Now I also smear an anti-septic hand creme (because I touch so many bannisters) and I will ask my neuro (this Friday) for info and if my GP is right. Best, Neta

wibblywobbly profile image
wibblywobbly

Hi, I had incontinence problems even before I had a diagnoses of CA. I have UTIs several times a year, but at the moment my body usually manages to clear it up. However, this is something i need to discuss with my neurologist at my appt in the next couple of weeks. I have been taking Ceris for about the last 18 months, which is usually given to MS patients and definitely makes a big difference. Before that I had to plan if there was anywhere to go to the loo before I could go out. I am in France so don't know how different the treatment is here, but all doctors including my GP say that the nerve controlling the bladder control is usually effected with neurological illnesses - therefore the Ceris def works. Good luck

neta profile image
neta in reply to wibblywobbly

Thanks for responding. I also had UTI's before a diagnoses of CA. I wonder if Ceris is marketed under a different name here. Something with a "b". I went to the neurologist on Friday and she kept saying this medication (also) given usually to MS patients (I don't have MS) and is only relevant if I have spasms. "Do you have spasms?" she kept asking me. I wasn't sure what she meant. She said she doesn't think there is a connection (in my case.). The GP said there could be some small "leakage" which can re-infect the bladder area. MY neurologist sent me to see a urologist. Neta

wibblywobbly profile image
wibblywobbly

Hi. Yes I do have spasms - all over my body and my muscles are very contracted. For the spasms I take baclofene, which may be the medication your neurologist was talking about as it is also given to patients with MS.

My neurologist here explained that there is a nerve which controls the bladder, if it doesn't work properly then we never empty our bladder properly, which can result in bladder infections and then progress to kidney and liver problems. My neurologist is very concerned to keep a check on this. The effects of the bladder not working properly is that we either go often for a wee but it is only a small amount, or we go hardly at all. Both ways can be treated with the ceris. The Ceris works most of the time for me, but I have the odd week or two when it doesn't seem to work so I need to discuss this at my neuro appt in three weeks time - I don;t know if its important or not. The Ceris is also known as Trospium - I do not know if it is available in the UK.

Hope this helps :)

neta profile image
neta in reply to wibblywobbly

Thanks for this. my neurologist didn't say anything about a nerve but she did write a letter to my GP advising that I see a urologist to make sure that there is no blockage. I don't have spasms so she did not see an indication for the baclofene. I will see a urologist and take it from there. I go to the bathroom often but that could also be a woman's thing, no? But a UTI is unmistakable with its sudden on come, pain, super-frequent urination and small output. I tend to think that I have become immune to most (many) antibiotics and perhaps don't shower enough.

Neta

wibblywobbly profile image
wibblywobbly

Yes one would think that an UTI is unmistakable but I have had infections since the real onset of my illness with no other symptoms other than going to the toilet frequently with only small amounts. It is possible that your prob is a womans problem, and I guess they will let you know at the urology dept. I think that is different, for example I have no little leaks when I cough or sneeze or laugh. Just had to go to the loo frequently and with very small amounts. When my Ceris medication doesn't seem to work for 1-2 weeks I don't usually see the Dr. I just wait for it to pass so I don't usually know if it's due to an infection or not.

The problem with these illnesses is that we don't all have the same symptoms. Everyone seems to be slightly different and at different stages.

I'm also in France not the UK and treatments seem to be different here.

neta profile image
neta in reply to wibblywobbly

It sounds then, that we might have different issues. Who knows. I have read on the Internet that some women develop uti's routinely after sex. These women say that one has to be scrupulously clean at all times and they shower and urinate immediately after contact. Sorry to be so vivid. I am seeing a urologist on Thursday. I hope he knows what ataxia is. France--- what do they do there about everything?N

wibblywobbly profile image
wibblywobbly

I think yes we prob have different urine problems and probably for different reasons. Mine are definitely due to my illness. I don't think I can comment on yours as I don't know enough on this subject. Hopefully the urology dept can help you on Thurs (tom?), Let me know how you get on. I don't know what would happen in France as your problem seems to be different to mine.

Good luck on Thurs :)

neta profile image
neta

I willl keep you informed. N

wobblybee profile image
wobblybee

On numerous occasions I have had excruciating spasms in my bladder. It causes

me to freeze instantly because any movement makes it agony until the spasm

eases. This is separate from cystitis, which I have also had. I once had investigation

for frequency, nothing was found but the rummaging around caused a very bad

infection. During the investigation another reason for pain was detected, I have

adhesions around my ovaries, an appendectomy when I was only 5 is thought to

be the cause.

I've never had any medication for the spasms. Prior to having my gall bladder out

I was prescribed Baclofen, I didn't find it very quick acting.

The bladder spasms started around the same time that I became aware with

balance issues. I know this sounds odd but I distinctly remember two occasions

when I commented that the floor I was walking on wasn't level, and I hadn't been

drinking!

neta profile image
neta in reply to wobblybee

I have no spasms as you write. It sounds like, in your case, there is a connection between the CA and your bladder. I told you that my neurologist spoke of spasms. Last week I saw a urologist and .he suggested that I do an ultrasound to make sure there is no blockage. He also said that vaginal infections and urinary ones, have the same sensation. He says each UTI has to be subject to a lab test I don't think I have a blockage. Maybe a vaginal bug that infects the bladder,,,,nothing to do with CA

Today I saw my shrink. He seems to say that I am over-involved in this ataxia thing, because my abilities dont match my infirmities. He doesnt get the whole heel thing and thinks I an obsessed with my looks, N

Hello, My husband has cerebral ataxia. These last couple of weeks he spends his days going to the loo and he looks exhausted. How can I help him?

Lorraine

neta profile image
neta in reply to

Dear Lola,

I really don't know. But after rereading many of the responses here, I think this is a question for your neurologist. maybe the bladder is not emptying enough or maybe its a CA-nerve thing, Or maybe he has MSA and several organs are affected, Dunno but good luck, N