a question regarding continence- warning that this is a VERY embarrassing/ blunt post so please don't judge!

hello everyone

i hope you are all enjoying sunday. i need to ask a question that has been on my mind a lot.

i regularly suffer from very slight incontinence of both kinds, only to the extent that neither my bowels or bladder completely empties, and i always have toilet paper strategically positioned to prevent any transference to my underwear… does anyone else suffer from this?

please accept my apologies again for being rather blunt, but you were warned!

hi fluffyollie

most of us understand this from personal experience.

can make me obsessed about smelling so have more then one shower a day and spray stuff to smell nice.

at the moment my bladder is behaving very well which may be because i have just started betmiga.

don’t lets the B’s get you down

carole x

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Hi Fluffyollie. I have a similar problem though mine is getting worse. I get urinary incontinence when I walk sometimes and my bladder feels irritated. I think it’s called stress incontinence and have been doing pelvic floor exercises.

When I walk it massages my bowels and makes me feel I need to go sometimes. I have to know there are public toilets near where I am going to otherwise it could be embarrassing if I don’t make the toilet in time.

This MS is exhausting.

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hi carole

thanks for your kind words- i will remember to pack a deodorant with me, so that’s a good piece of advice.

fluffyollie xx

thanks for the reply lenney- it certainly is exhausting. your point of massaging bowels may explain part of my problem. did your gp/ neurologist tell you that?

fluffyollie xx

I came across a current nurse led study about abdominal massage for incontinence and constipation in MS. It is to help the insides get working and help push things along.

I mentioned my problems to my neuro recently and the study and he is referring to bowel and bladder team. I said to him walking seems to massage my insides and bring the feeling on and he seemed in agreement.

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I used to have terrible bladder incontinence and my ms nurse referred me to an incontinence nurse who is lovely by the way and I now have to self catherterise which means I no longer wet myself which is a god send. As I was not emptying my bladder fully but now I do. My bowels unfortunately are another matter in which I never feel empty and suffer from constipation. So any advice on that one would be grateful

Polly x

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MS is thhe pits really, isn’t it?!

I had an episode about a year before my dx, where I collapsed enroute to the loo. Long story short, hubby had to physically hold me steady on the loo, as I was swaying and seemed faint. I lost all control of my bowels and it just poured from me. The smell was unbelievable. I was too faint to even be embarassed, however, the next day as the memory returned it was a little but we laughed about it then. Now I know I have ms, I realise this was very much a symptom at the time. I have lost the ability to use my pelvic floor muscles. Try as I might, all it does is tighten my tummy muscles. The fear of this ever happening to me again is horrible. At home is bad enough, but if it happened outside somewhere, I fear I’d become a recluse. How the hell would I live that down?! I keep some scented wet-wipes in my bag and usually use them when I’ve been to the loo, just in case… :-/

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Oh fluff…pleeease, never ever apologise for what this pig of an illness does to you.

Only this morning, when hoisting onto my commode, my bowels decided not to wait till we got over the loo…my carer quickly shoved the commode bucket under me, but didnt quite manage to catch it all and plop…onto the floor, then she ran over it and spread it even further!! On the floor like yesterday!

I reckon the vast majority of folk hereabouts has or has had this kind of problem.

Due to years of wee accidents, falls in public loos, wet nix, having to ask shop assistants for help to pick me up, weeing every hour and not getting to the loo on time, I decided to go for a supra pubic catheter. I do by-pass now and again, but overall, its the best thing since sliced bread! Its mostly a matter of emptying bags and changing night bags for day bags.

Now as for the other end…my bowels play whatever game they fancy…I go well for a coupe of weeks, with help from hubby or carers, then they just refuse to do owt!

When that happens I take an extra movicol to my usual daily one. I add figs, prune juice and tummy massage.

If I`m feeling iffy, I wear a pad to protect clothes.

Dont we know how to live, eh?



I find it really refreshing that everyone can discuss these problems without feeling dirty or embarrassed


Hi fluffyollie,

Speak to your MS nurse, they might have some suggestions.

Have you got a RADAR key? Opens all the disabled toilets in the country. By online or from a shopmobility place.

I find it invaluable, especially at service stations and anywhere there might be a queue.

Keep smiling…

Jen x

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Yep it is, but I suppose that’s the benefit if being incognito. Don’t think I’d can’t having this conversation with a stranger in the street. :slight_smile: Having a discussion is okay here, but I don’t fancy reading a daily blog about someone’s trips to the toilet or reading what occurred there, or not, just as something to write about. :slight_smile:

Do’es any one find a sudden change in temperature really doesn’t help I struggle with my continence and its really bad when I try and walk I think gravity just takes over sometimes I had a very unfortunate wee accident on the floor of debenhams last week just after I’d walked under thier over door blow air heater my heart goes out to any one struggling with incontinence xx

Oh you poor thing Prairiemarmot. I hope people were nice to you but no one should suffer I used to suffer terribly from incontinence so can empathise with everyone of you but there is help out there just asked to be referred to a continence nurse who will be able to help you.

Polly x

Hi Ollie,

I used to know the position of every public toilet in Eastbourne before we moved away. I have had to empty my bowels in someone’s front garden; my wife’s car; walking to the train station; at the train station & Kew Gardens. I have crapped my way around the whole of south east of England.

My mum was a nurse and the stories she could tell made her a hit at parties. Of course certain subjects are taboo in polite society, but my mum was a terrific icebreaker in any situation … At one time she worked in the Sexually Transmitted Dept of the local hospital and she would introduce herself as the V.D. Queen of Penzance.

I learnt to be open and frank about my body & it’s less attractive functions. There are surgeons that have seen parts of my body that I’ll never see. And I really don’t want to.

I have a Continence Nurse who has helped me with both bladder & bowel incontinence.

Without knowing your gender I can’t be of much help about a dodgy bladder. The medications I take give me severe constipation and often have to ‘manually disimpact’ myself (wearing disposable gloves). I have learnt to balance my meds with a nightly dose of Senacot. There’s always a celebration when I get it right.


When a man’s gotta go, a mans gotta go. And when he’s gone …

There was a study (not specifically about MSers) but it said what can help constipation in both men and women is to press the perineum if feel constipated. Perineum self acupressure. I’ve tried it and it does seem to work.

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that makes sense… thanks for letting me know

if i pick up any advice on the way, i will post on here. take care, fluffyollie xx

that is quite interesting as i have had some similar type of expulsions, but thought it was a side effect of the myriad drugs i am on. our other halves are amazing really.

scented wet wipes are on the shopping list! thanks for replying xx

poll, you are such a tonic. i am sorry that you suffer from this bastard of a symptom. thank god you’ve not lost your spirit x

do you self- massage your tummy? it sounds a good idea.

i always say i wouldn’t wish ms or its many sfx onto anyone, but i have recently changed that… i wish it upon ids (or ibs as i call him, as they both involve shit), and when he needs support or help in managing it i will be punching the air like he did when a reduction was made to benefits. bastard.

sorry, got on the soapbox a bit there… thanks for your lovely supportive message poll xx

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