Has anyone else got this problem or know of a solution, please.
My problem is I can not open my anus, it’s basically clamped shut. It’s been getting worse for years. The last 6 years I’ve been using Peristeen anal irrigation system which thankfully makes everything into dirty water so there’s no solids but I’m finding it harder and harder to even let the dirty water back out. I manipulate the exit open with my finger but thats even becoming a struggle.
Any ideas anyone or even where is this going to end, my fear is a colostomy bag 
No joke, but have you tried a butt plug? Get a “trainer set” to increase the diameter. No experience of it myself but they do exist.
Thanks GCCK, I’d always thought they were for people who suffered with leakage but I like your thinking about stretching the muscle.
No, not leakage… Have a look on lovehoney 
Hi ive tried the butt plugs didn’t work for me my problem is loose stools it’s effected my life massively I only leave the house for appointments only have to take at least four loperamide before I leave I haven’t been to bed for nearly a year now I just sleep in chair near to toilet I am starting Peristeen plus self irrigation next week bowel and bladder nurse coming to my house next Thursday is it easy enough to do im hoping it gives me quality of life back fingers crossed
Hi Sue,
I’m sorry to hear your life has been so bad for the last year, it must be absolutely awful for you.
Peristeen is really easy to work if you have responsible use of your hands. So long as you are able to reach your bottom it should be easy enough to insert, then it’s just a matter of pumping the water which does give your wrist a bit of a work out. It can be a struggle to get a seal to stop the water just running straight back out, other times I know the water has gone in but it doesn’t come back out, if that happens I just put more water in and that does the trick. It will wash out your bowel and hopefully that will allow you some freedom. I don’t know if your problem will be that your bowel will just refill and therefore start leaking again. My problem is more I can’t open mine, not that I can’t keep it closed. I only ever get out dirty water, never any solid lump but I still never have any leakage. I do pass a lot of mucus though which is a worry but I just live with it. I complain plenty about having to do it cause it takes up an hour of my evening but for you an hour would be a fantastic result cause the rest of the day and night I can forget all about my bowels.
Good luck with it all, I really hope it’s a success for you.
Thanks for the reply I will let you know how I get on the nurse said I will do it every day for a week then every other day I’m willing to try anything looks like it will be another job on my husband’s list haha
Yeah my husband does have to help some days. I was told the same every day to start with then every other but I’ve ended up doing it every day. I was also told to use about 750 of water but I’ve ended up using 3 or 4 full bags every night. Maybe I need to cut down the amount I’m doing it. You could ask your nurse if you can do it too much and let me know, thanks. I’m scared to ask.
Were you offered any other solutions or just the anal irrigation? Again I’m scared to ask if there is anything else or if a stoma is the next option and I know it would be worse for me.
I hate this illness, it just ruins our life’s
Well i suggested a stoma if it gave me my life back I started laperamide they said I could take up to eight a day I haven’t took that much but six I have when I need to go to appointment they sent me to physio for pelvic floor muscles I went but she said no point as my muscle in my bowels is minimal she gave me the plugs they didn’t work for me I had appointment with bladder and bowel again they suggested the irrigation so see how it goes it really is horrible isnt it I have ppms diagnosed 2018 took seven years to be diagnosed Whats your if you don’t me asking I’m quite new to this forum
No I don’t mind you asking at all, I was diagnosed 2014 with rrms, I’d had an issue with pins and needles in my legs 2006 but kept it to myself, I’m bad for that. My mum also had Ms so I had my suspicions in 2006, then 2014 I had optic neuritis (not spent right, sorry) and was diagnosed then. I’m on my 4th dmt but they all upset my white blood count so I keep getting taken off them. Other than my bowels and poor bladder control I’m basically ‘normal’. I’m probably more clumsy than I should be and no memory or concentration. My mum was totally disabled with it, her last 5 years she could do nothing for herself so I know how bad it can get. I gave up my work when I was diagnosed and became a carer for mum although I never told her I had ms. It would have broken her heart, she kept saying she hoped no-one in the family ever gets Ms and I just hugged her and said we’re all fine she passed away 3 years ago now and I miss her so much.
I said to myself at the start of this message keep it short!! Think I’ve failed.
Ms makes me so miserable and yet I know I’m one of the lucky ones.
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Oh I was a carer for my mum she had dementia it is upsetting not nice like you I kept my symtoms to my self at first and like you my spellings not good haha my husband gave work up three years ago to look after me I have minimal weight bare I just about get round the house with my dolly trolly I am down as housebound it when I get my bowels sorted I will get out in wheelchair
I see my neurologist in couple of weeks he has put my name forward for dms it it was turned down cause I was to far gone so have to see what he says this time I haven’t seen ms nurse since 2018 eventually got over phone appointment with one week after next see how that goes
Does anybody suffer swallen legs and feet I have been wearing compression socks for nearly 3 years now been on water tablets keep them elivated as much as possible nothing seems to help going to see about being reffered back to healthy legs I think would like to see if anybody else suffers with this
Morning Sue,
I know my mum’s legs were the same as yours, full of fluid and water tablets, compression stockings made no difference. I used to think hers was more a circulation problem as her feet were white and absolutely freezing.
You’ll see your message has came at the bottom of the bowel thread, you could maybe start a new topic with a heading along the lines of swollen legs then more people might see it.
Do let me know how you get on with your Ms nurse and bowel nurse. Good luck.
Hi LucyAnnie I don’t know how to do that im no good with technology haha thanks i will let you know how I get on and I will ask her a out how many bags of water see if your over dosing the message might end up anywhere haha
I’d appreciate that, although I suspect I know the answer, but only if you get a chance, hopefully you get a helpful friendly nurse.
Well I met her last week i thought she looked stricked but she was very nice so hopefully I will ask her she’s coming Thursday i will be in touch when she’s been
Tell me to mind my own business but have you any children
Hi lucyAnnie I did reply back to you did you get it I was just wondering