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Just horrendous

I’ll apologise in advance if this is too much information. Today I pooed myself. This is the second time this has happened, both times I was, thank heavens, at home but today I was on my own. My legs don’t work well and in trying to get my clothes off while at the same time needing my hands to lift my legs, I ended up with poo down my legs, up my arm and all over my hands. It was just the pits. Two days ago I was my brother’s wedding, what if this had happened there? It doesn’t bear thinking about. I already wear Tena protective underwear if I’m going out, but I don’t know if even that would be enough to contain the poo. What else can I do? I’m going to be afraid to go out at all if there’s a chance this might happen.

Hilary

Blimey it is horrendous I have similar nasty stories- you are not alone. My GP prescribed loperamide - it worked and bunged me up good and proper. She said perhaps I should just take it when necessary I.e special occasion like your brothers wedding. There is also other things you can do called peristeen made by coloplast. I’ve never used this but it could be an option for you Hope you get sorted as it is awful Hugs Min xx

Thank you Min, for your suggestions, and I’m sorry you’ve been through it too. I think it has to be the worst part of this disease, so far for me anyway, the loss of dignity when this happens.

Hilary xx

yes, had this happen more than once - I take Loperamide every day now and use Peristeen or suppositories to empty. Otherwise I would never go anywhere. Talk to your GP or MS nurse and get referred to a continence nurse who can help you. It’s awful and I know from bitter personal experience how dreadful it is - I stll plan everything around my bowels however things are better than they were.

Hi Hils, this has happened to me too, more than once. On all but 1 occassion, I was at home. So it`s an extra shower when it or bladder accidents happen. I always take spares out with mne ie leggings, n

Anon has given you some really good advice.

I use big NHS pads and like you, hope they catch the majority of whatever. When i go out, I take spare clothes, a towel, wipes, pads.

It`s worse than taking a babby out!

luv Pollx

Hi Hilary,

Are you on Copaxone as I have read that this could be a side effect ?

If you are it might be worth changing to a different one,

I feel bad enough when my bladder starts leaking so I can only imagine how distressing bowel incontinence is. I do hope you can find some help from your gp.

Anne-Marie

Hi Hils, oh I know, this has happened to me a few times too.

Luckily I was at home each time. But once I was on my own and just had to sit in it and wait til hubby got home. Then it was into shower and the bin for the clothes…just too yeuky to wash!

I always take a spare set of clothing, wipes, a towel and a plastic bag with me now.

I have had minor accidents in that department when out, so although it upset me, I didn`t have to rush home.

So charming this monster, eh?

luv Pollx

Yeah, this happened to me a couple of times at work - normally I manage to make it to the loo but it’s devastating when you just don’t get enough warning. Miraculously, I was able to hide it long enough to get cleaned up. to say, being in my twenties and physically well enough to work, coping with this on a daily basis just destroyed me for a while. I think the hardest thing is to accept that it’s never going away, but you can take steps to minimise the risk of it happening. I use a combination of the irrigation system, suppositories and loperamide which has been pretty successful. If I have a special event I just don’t eat for a few days beforehand and wear Tena pants if I’m feeling really anxious - not great but certainly it gives me a feeling of more security. I also carry wipes, spare pants and a plastic bag for soiled clothing - haven’t had to use these since I started my regime but makes me feel better being prepared! I’m quite physically able so I’m not sure how I will eventually handle it, but I would definitely say to speak to your ms nurse and get some help - they can’t make it go away but you can learn to live around it (just like most crappy things ms gives) Don’t suffer in silence, it’s embarrassing but not our fault x