Last reply 1 year ago

Please i need help! This is about incontinence. what do you do! I use pads but They are sometimes not enough i wet myself! The urgency is so high and i walk so slow j wee myself. Reaching desperation! Today i had poo accident for the first tine! I am totally desperate. My stupid lack of mobility my feet stuck to the floor when i try to walk! Is there anybody permanent on a wheelchair how do you do it’!!!!!!?????

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1 year ago

@mmhhpp , yep, I know the feeling. You need to get to the loo quickly and your feet just don’t want to move.

Urinary incontinence can be improved. You need to understand what the problem is first. We have MS, so this could be “spastic bladder”, not sending the right signals to the brain. This can be helped with medications.

But, there could be a problem of retention too, not emptying properly. This can be helped by adopting Intermittent Self-Catheterisation (ISC).

I’d tried all of these and then I heard about Percutaneous tibial nerve stimulation (PTNS).

I got a referral to Urology to discuss this. I got told that it didn’t work and that I needed Botox.

And that’s where I am now, having regular Botox injections…….

Faecal Incontinence is another kettle of fish.

Have a read through this for other ideas:-

1 year ago

Thanks stumbler i managed a gp appointment 6 march. I am really so desperate… help at all out there….i am so upset…..i dont even know what is out there, i had occupational therapist , nurses from the medical center and noone comes with help, and i phoned for having partial care and everybody says sorry we have no capacity….sorry about the nag, it will be better tomorrow….bad day today…..

1 year ago

@mmhhpp , don’t worry about the nag, incontinence is a very restrictive problem.

Ask your GP to refer you to Urology, so that they can give “your plumbing an MOT”.

Once, you’re in the hands of Urology, you can ask them what your options are.

1 year ago

Thanks stumbler! I really appreciate it. Xx

1 year ago

Hi @mmhhpp , like stumbler, I can’t help with the bowel stuff, but I tend to use pads (Aldi’s max ones) and also carry some along in a daypack. Good to carry spare underwear and trousers if you have room. There is also Tolterodine, which can help with the urinary incontinence….although it does not work as well after you’ve had a child (camel through the eye-of-a-needle and all that 😉

Most of all, which makes me look like a complete liar when I can chat to my MS nurse for 2 hours without a toilet break, is that I simply will not drink anything if I have an important appt. This is NOT a healthy way to do things.

Good luck with it (it is awful; I’ve been in work and pee-ed myself, before being diagnosed and before I wore pads…and had to leave wearing my coat tied around my waist…image an emoji throwing its eyes skyward, as I don’t know how to conjure one up here!)

1 year ago

Dear Lucyh

Thanks for your reply! I will mention this drug to my GP. does it work for you?
I had C section did not have su suffer with that 🐪! Yes it is awful , i also limit my amount of water, we went to France 19 h in a car !!!!!!!!!!!!!! Like you i very limited the water i was having.

But mate, if 1st passage issues are bad i can not have words for second passage issues when you can not even move!!!!

I still hope this issue resolves soon.

Have a grea day xxxx

1 year ago

I would say you need the continence advice team of nurses, I think you can self refer without going through a gp.
Years ago I read ‘Standing in the Sunshine’ by Cari Loder. She said that black or navy leggings made both problems less noticeable by other people. Good luck in finding help.

1 year ago

This drug worked like a dream for me, before I had my child….in fact, I was so scared I would pee myself that I still tried to go to the loo even when I didn’t need to (which defeats the purpose). It didn’t work as well after our child arrived(!) but I plan to go back on it again, keeping the daypack on my back for security!

My husband still remembers me pee-ing in the bloody car as we got caught in traffic, so I can relate to the 19 hour trips etc!! Btw he has IBS and, after years of being told to have a high-fibre diet, he was told to embrace a low-fibre diet (I wonder if this could help the other aspect).

I would love to open up a cafe, not for disabled people, but one that EVERYONE could access….it would have a loo with a shower/shower-head in it so that people like us could get cleaned up with a modicum of dignity!

Take care xx

1 year ago

I guess I am the same as those who have posted, On one occasion I had to drive to London from Norfolk for a very important meeting and got caught out just as I arrived and had to drive all the way back sitting in my own poo. This xmas was the worst for me as I went to stay with my son in Lancashire and on xmas day wet myself three times and poo,d twice. not very pleasant for the others let alone my own self esteem. I now carry a special plastic bottle in the car and wear a damned nappy just in case.
It is no wonder those of us with this disease can get so depressed very quickly if not sorted out.
My sympathy goes to all of us with this problem

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