Hi all, going anon on this as very embarrassed.
Yesterday i went to see my sister, dont see her too often as both disabled. I was telling her how well i was doing with self catheterization and that i was now on Solifenafin which was really helping me with not wetting myself too much. But as i went to go loo, i started soiling myself and no way could i stop, also typical it was loose! I had to tell my sister what had happened and could i have some pants and pads. I am 46, this shouldn’t be happening, now im scared of going out as i dont have much feeling and i dont get any warning beforehand.
I hate this MS x
Anon it is embarrassing but if you’re anything like me, then sensation changes from day to day. There’s no guarantee it will happen again, you might have eaten something causing diarrhoea. Your continence nurse can arrange pads for you but please don’t let this stop you going out. I’ve had episodes like that but fortunately it’s not all the time. Your nurse also has medication and equipment available which can help, put your shoulders back and give her a ring, you’re definitely not the first to suffer this. Remember that it’s the ms not something you can control.
Hi Cath, no im afraid this has happened before and not just when its loose either. I sometimes can tell that i need to go but it cant wait, i have to get to the loo quickly and many a time i get there just, if you know what i mean.
The continence clinic know but at mo as i take laxido and senna i self medicate it to when i need it. They are trying to sort out my wee issues which if it carries on as its doing then i think thats sorted so when i go next hopefully they can sort me out with my bowel issue as something has got to be done.
Thank you for your kind words, it does mean alot to me to know i have the support of the forum.
Anon, how awful for you. Either phone your MS nurse or see your GP and tell them (this stuff is just part of their job & they hear similar stories daily) and say you want referral to bowel nurse ASAP. There are things that can help so don’t delay. It might never happen again but the awful effect it has on your confidence means you should see bowel nurse so you can get help and restore confidence. Pat xx
Please dont let this stop you from going out, give them a ring asap and get some help for it, do not let it take your confidence.
Hi, I really understand how awful this is for you …until fairly recently I too had this problem constantly. The bowel nurse was very nice but nothing she did or gave me helped, one of the many things she gave me to try was a sort of plug/bung thing…oh my goodness it was awful…really hated it…I even tried peristeen which people seen to think is marvellous. As one of my problems was constant diarrhoea I think this was why…I’m convinced it would work well for someone who didn’t have that problem. In January last year I decided to try LDN within a few weeks I started to notice quite a difference and within a few months it was so much better…it’s not 100% perfect… but it does make life so much better. You can read about LDN on the LDN Trust website. It seems to help different people in different ways but it truly has been wonderful for me. Don’t be embarrassed about it…so many if us with MS have this problem. I do hope you can get some help with it soon With best wishes, Nina
Snap been there and the tee shirt is worn out I am now more or less on an even keel but day before yesterday had to rush home fron next door but two and only just made it no mean feet in a wheelchair. I feel for you it is embarassing but your not the only one this happens to. No consulation I know but it is the MS not your fault.
I’ve always suffered from IBS and can suffer from truly desperate urgency, and I lost a lot of weight (stress maybe?). I’m still not discharged by gastroenterology, as generally, I had an upset stomach most of the time… along the way, they found ulcers and it ‘looked’ like crohns but all my tests/biopsies are normal. Things were so unpredictable and I was desperate so try to calm things down, I even cut gluten out of my diet but that wasn’t the be all and end all either. Mind you, I now have absolutely minimal gluten in my diet as it feels better not to eat it.
I was even put on codeine at one point but after 4 weeks, that gave me terrible upset stomach! Then I moved on to loperamide (immodium) and was taking between 4 and 6 tablets a week for a long time.
The steroids when I was Dx, followed by starting LDN made things almost normal again. So when things went a bit wobbly after a UTI recently and didn’t get better when the UTI cleared, I asked my MS nurse about it. She got right onto it after we’d exchanged a few emails and she got me another course of steroids, which has calmed things right down again (funnily enough!). There’s nothing quite like that sheer panic to get to the loo to make your heart race!!!
I’ve been reporting back to her and I feel like a bit of a muppet. I never talked about this side of things to my neuro because I just had so little idea about MS then and when I mentioned ‘urgency’ he immediatel asked about problems passing water and I knew the spinal unit had asked me about hesitancy and the moment kind of passed by.
So the jury is still out on that one really but I’ve obviously been thinking about it a lot. My gastroeterologist even commented that it was confounding that the steroids had such a positive effect (even through they are the same ones they’d give you for Crohns!), all very strange and confusing. Glad to say I have now regained my weight and LDN seems to be the game-changer on that as I stopped taking the loperamide a few weeks after I started that.
It’s stressful and embarrassing alright.
Hi everyone, sorry not got back to you sooner, my tablet seemed to go on the blink yesterday, its fine now though, very weird. I will ring my continence nurse today and see what she says, i dont go back till the end of April so i cant leave it that long.
Atleast it was just my sister that was there at the time and although she doesn’t suffer with these kind of problems she does understand a bit more of what I’m going through but i do feel embarrassed that it happened.
Thank you again for your kind words.
Hi,iknow what your going through,been like you for the past twelve months,even had these problems at work.I seem to get one warning feeling and it’s literally seconds before i can be doubly incontinent.It does seem to improve but comes back to haunt me when i least expect it.Good luck hope things improve for you x.