Toilet??: I have a genetic form of cerebella... - Ataxia UK

Ataxia UK

4,032 members4,571 posts

Toilet??

ljp103 profile image
6 Replies

I have a genetic form of cerebella ataxia type 2 but I'm writing this question really for my dad (I don't suffer from this). So earlier this year my dad had bladder stones removed which were causing him to be basically incontinent. Now, nearly a year down the line (he has recovered fully from his operation) he still has a frequent urge to pee. The doctors are baffled as they can't see anything causing this problem anymore. I was wondering perhaps it is effected by his ataxia? Does anyone else suffer from this??

Written by
ljp103 profile image
ljp103
To view profiles and participate in discussions please or .
Read more about...
6 Replies
wibblywobbly profile image
wibblywobbly

Hi yes I have this problem. It became so bad that I had to consider where the toilets were every time I went out.

The prob is caused by the nerve which controls the bladder.

Does he pee frequently, and often only a small amount? If so it means he is never emptying his bladder and so is prone to bladder and kidney infections.

Don't panic there is help😊. I take a medication called ceris which has completely cured the problem. It was prescribed by my neurologist.

Ask your gp or neurologist about it

Good luck 🍀😊

Alison

dunfr profile image
dunfr

Hi, yes I too have the problem. The frequent urge to pee, and I have to get to the loo NOW! Several months ago I had the same problem with my bowels...

If I am going out I limit my fluid intake considerably beforehand. I still have to pee on arrival at my destination though.

I have not tried Ceris (thanks wibblywobbly for the tip).

I thought it was only me who suffered this condition.

barb1228 profile image
barb1228 in reply to dunfr

Dunfr what did you do about bowel urgency/frequency? Did it just go away by itself or do you still have it. I always have to know where the bathrooms are and nobody better be occupying it. It's on a moment's notice that I have to go and that I have less than a minute's time. I have to stop what I'm doing and just go. I feel like I am an accident waiting to happen.

dunfr profile image
dunfr in reply to barb1228

Barb1228

I never go out unless "I've been" - my body is getting used to me emptying my bowel in the morning either before or just after breakfast. However, I have been caught out 2-3 times, much later in the day, when I have been away from home - fortunately the toilet cubicles have always been empty. I did have a small accident once - bathroom was 1/2 mile away...

So the urgency is still there ( the need to go without notice) but likelihood of needing to go when I am out is much reduced. Hope this helps.

barb1228 profile image
barb1228 in reply to dunfr

It's the frequency also. I go and then I have to go again a few minutes later. I evacuate about 3 or more times daily. Sitting helps. But if I'm standing or walking I'm in trouble. Imodium helps.

Jim95 profile image
Jim95

Yes when i need the toilet i have to go straight away because if i don't accidents happen you know what I mean 😉

You may also like...

Waiting in line for toilets on long flights

a question is about the difficulty of waiting in line at the toilet on long flights. I often make...

Length of toilet visit.

take 10 20 min to empty my bladder. Also at times if I fall asleep my bladder spasames and I'm...

Should I take the Covid 19 vaccine?

for fear that will worsen my ataxia symptoms. I have cerebellar ataxia. I would like to know...

4yo undiagnosed Ataxia

son who the geneticist says has Ataxia. We are still waiting on an Ataxia gene panel results (it's...

Still having problems with work

information pack from Ataxia UK plus a letter from Ataxia UK explaining exactly what my Ataxia is...