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Very distressed and can't find any info

Im newly diagnosed with RRMS, but have had really distressing development in my symptoms in the last week or 2. Basically I have found emptying my bowel difficult (distressing in itself as I’ve always been extremely regular and aware of what my body is telling me!) however this has been followed with now two episodes of faecal incontinence. Massively distressing…has anyone else experienced this and is there any help? I’m only 27…

If the difficulty emptying your bowels was due to constipation, I understand that overflow diarrhoea can result. this is a reaction inside the bowel for reasons unknown that causes the material in waiting to become runny and leak round the solids. If this is the reason, you need to get the constipation sorted - not a problem I have had but your GP or MS nurse would advise on the various medicines that can treat this. If the problem was not caused by constipation - you might benefit from a discussion with a gastroenerologist. I have had unexplained diarrhoea (without constipation) which has been investigated and just is something I have to live with - I take loperamide on prescription (imodium liquid) to keep it at bay.and peristeen irrigation to deal with emtying probs. I know how miserable and worrying all of this is - it has dominated my life for years. But do go and talk to your GP or MS nurse - bowel problems are common with MS but there is help.

Hi there

Yes, others of us have had the same experience and know how distressing and embarrassing it is. Ask your MS to get you an urgent referral to the bowel/bladder nurse who will be able to help you.

Oh and meant to say, check out bladder and bowel foundation website for information on bowel problems - they also do a card explaining you need urgent access to a toilet.

Hi anon

I remember the first time this happened to me and was devastated. Regarding what you said about having always known what your body was telling you, I think this is something you can re-learn - I’m pretty good now at knowing when I’m due to go and reading the signs.

A couple things may help. Firstly, take up Pilates or learn some pelvic floor exercises. These will help strengthen your pelvic floor muscle, which mean you can hold on for longer (doing Pilates will also help your balance and walking). And the other thing is a useful bit of information I read, which is that our bowels are most active up to 20 or 30 minutes after eating. That’s something I’ve found to generally be true, and I’m much more likely to need to go after eating. So when I’ve had a meal, I know to be a bit more alert to what my body’s doing. You might find it useful to go to the loo after eating, just in case.

Hope that helps

Dan

Poor you :frowning: I have only had problems with my bladder since the age of 16 so far (touch wood). So I completely understand how bad this makes you feel :frowning: I say listen to the people here. I would get in contact with the MS nurse they did send me to a clinic in the hospital just for these problems. Take care x

I’m 27 too and this is happening to me, so I know how horrible it I’d… How could I ever leave the house again? I thought. Sadly it’s something some of us have to learn to live with. Don’t dither about talking to your MS nurse, they have seen it all before! Although they can’t cure it There’s athere are things to help. There’s a bowel irrigation system called Peristeen that lots of people have had success with - it has the bonus of being helpful for constipation and incontinence. It’s such a horrible situation we find ourselves in but we have to learn to live with it the best we can,.and luckily there are people to help, be they Ms nurses or continence nurses or GPs. I’m still coming to terms with this but at least I’m not ready to pack my bags to signora anymore! PM me if you want to talk :slight_smile: x

*dignitas Please excuse numerous typos, doing this on my phone!

Thank you each and everyone of you for taking your time to reply. I’ve taken all your advice on board. Xxx

Yes love, I agree with you.it is massively distressing when we suffer bowel leakage.

It has happened to me several times. Luckily only on one occassion has it happened when I was out of the house.

Then I felt so horrible and upset that I did want to go home. But I do carry a change of clothes with me, so my daughter helped me sort myself out.

She refused to let it spoil our day out and we then continued with our plans.

Youve had a lot of really good advice, on here, so lets hope the situation won`t freak you out as bad, if it happens again.

I use NHS pads, so most of my mess is contained.

luv Pollx

I see my continence nurse on a regular basis and also a urologist from time to time. This will sound barmy but it worked for me. The continence nurse told me about it. I trained my bowel to open at the same time every morning over the period of a week. To help this, at about 8 o clock at night I have an Activia yoghurt and a warm (not hot) cup of tea. The good bacteria then seem to work gently overnight and sure enough in the morning I am ready to empty. This avoids the need to worry for the rest of the day! Don’t know if it will help, but good luck!

Boo x

i used to work in health care myself. And have worked with people who have had this problem and had a simlar incedent last year myself constapation can cause over flow in any person if you dont treat it. (There are worse problems that can occure) try taking some natural sena we used it with some people and it did seam to work. But in most casses change of diet is the biggest help as in lots of bran lots of fruit and veg. Thats what worked for me and touch wood i havnt had any problems since. Hope i could be of help james

Hi all

It’s very distressing and very confusing and very difficult to talk about

I’ve had constipation in the past - for me this is 'proper ’ constipation - when you can feel the stools there but it is too compacted/impacted to come out - this results in straining and if untreated can result in th leakage around the compacted stool

Thank goodness - I normally go first thing every morning - except when my symptoms are playing up! Then I just can’t feel anything.For me this ‘can’t feel anything’ feeling is different to proper constipation - I literally feel like my bowels are ‘numb’ - not working at all.

Then I go through a few months where I will go as normal in the morning - then at some point during the day my bowel will just empty!! Diarrhoea - no pain, no warning, no control, just the once then normal again the next morning. This can happen again and again, perhaps the next day or a few days later or the next week.

It’s so weird and so unpredictable. Does anyone else get it like this? Ie you go normally every day yet these ‘episodes’ happen randomly? I’ve blamed it on everything from food intolerances to stress, but I’m begining to think it’s MS

x