Im a bit of a prude on this subject coming from a mans man background , but this area is really playing havoc with me , who do you goto for help please or is there any diets you follow ? posted anon as its embarrassing for me sorry
Hi, you have my sympathy, I have this problem. With medication side effects and the ms I either seem to be severely constipated or uncontrollable loose stools. Your ms consultant or gp should be able to refer you to a bowel management nurse, and they can advise you on diets and methods to rub your abdomen to encourage movement in the bowel. Hope you can find some way to help this problem. take care
I find a sachet of fybogel everyday, sometimes twice, stops the constipation from happening in the first place rather than trying to solve the problem when it’s too late !! I also have a fruit purée every lunchtime which I just buy from the supermarket in a ready to drink sachet. I think they’re meant for children’s lunch boxes !! Other than that, the usual, crunchy bran cereal or who’ll wheat toast for breakfast and at least 5 a day fruit and veg. Catherine Xx
Don’t worry about it fella, I suffer with this problem too and it can be incredibly embarrassing, especially if you are a bloke! If it is really getting to you that much and you are having problems either going too much or not enough, then the peristeen system may be the way forward for you. I have had to use it due to this blasted condition for almost 6 months now. I was having about 4-5 episodes a week of not being able to control it and the Peristeen system as reduced this down to a far more manageable but still highly embarrassing once a week.
THis is basically an anal irrigation system and it has certainly given me the confidence to be able to do things. IT maybe worth approaching the continence nurses at you local community nuero team and see if they can help you.
Hi, you dont say what the problem is. Is it constipation or are your stools too loose?
I am guessing it is the former. If so this plays a huge part in neuro disorders.
I am immobile, so that makes it worse. I take 1 or 2 sachets of laxido a day. I eat a high fibre diet, BUT you must drink lots of water, to help flush it out.
I didnt go yesterday, nor today as yet…so extra sachets for me!
Speak to your GP and you will get something on prescription.
lf you are usually constipated - you can get ‘impacted bowel’ then you suffer with overload and it then becomes diarrhoea.
And you will not have control over it. Do be careful with eating a lot of fibre/fybrogel/bran as it can become like concrete and be very difficult to shift. You really need to drink plently of water - hot water with lemon juice is good for ‘self starting’. Once you have managed to empty yourself - colonic irrigation is a good idea - start a new regime of eating prunes/figs/apricots/raisins-chopped up small/natural greek yoghurt/ and toasted linseeds [ also known as flaxseeds] and a squirt of runny honey every morning or at night-time. lt will certainly get you going. l do not eat any cereal/grain as l find it upsets my tum - most folk with ms can’t tolerate gluten. l try to stick to the hunter/gatherer type of diet. l eat lots of protein/fat/veg/salad- l follow the Barry Groves eating plan - which is the same as Terry Wahls - except his books were published years ago. lf l eat any carbs - it just saps my energy. And once you start eating carbs - you never feel full and keep wanting more. That box of doughnuts - can you eat one and stop - no - you just keep wanting more. Same with biscuits. Lots of vitamins in dried fruit and linseeds and the yoghurt is a pro-biotic.
You only have to mix bran with a little water and it will set like a brick - and the bowel is all twists and turns and the bran/carbs can easily block the pockets causing irritable bowel/diverticulitis. Which are all auto-immune diseases along with ms/crohns/coeliac/hypertension.
folks i cant thankyou enough for your replies , yes its time i seek help i go from normal for 2 days to very very loose for the 3rd or 4th day and suffer bleeding , ive been to my Drs 3 times so far about this and they give me cream to use , but its getting where im feeling dread when leaving the house , so much so last week i was 15 miles away and it dawned on me and it resulted in me pulling the car over and having a panic attack , i really do appreciate your replies and support and hope to return the favour 1 day on here and be as brave as you folks with my name showing . thankyou
theres no easy answer… i used peristeen for 2 years but now i struggle to use the equipment involved cos cos right side goosed-and am right handed gggrrr. tried with left but u really need to hands. district nurse came to my home and have done it for me but now that i have got regular care in place via social work i find that too restricting so…i had to rethink. fortunately i have a brill gp who lets me try most things-as long as its not stupid or dangerous! so after several weeks/months of getting ‘to know my bowel’ i now take one senna at 6pm daily and an extra 2 when i know i must be full. but it takes time-i dont think theres a quick fix for owt with ms!
i sincerely hope you find ur solution to make ur life easier.
Sometime ago, l did write on here - that l thought the bladder/bowel issues we pwms suffer with is the worst part. Not being in control of bodily functions is so degrading. l then had a reply from someone - a rather ‘curt’ response - asking me for proof of this and where did l get my information from. Well, as someone with 31yrs experience of MS - and in all of that time its been my bowel/bladder incontinence that has caused me the most distress. Other people can see that something is wrong with you when you struggle to walk - but they do not realise the problems going on ‘inside’. The person who demanded proof of what l said must be one of the lucky ones. l answer the best l can to help and reassure anyone with these problems as do many others. Especially, as many people write anonymously because they are so embarrassed and feel that they are the only ones.
Our b/b problems mean - even if we still can go to work - can we stand at a bus stop - catch a train - always looking for the nearest loo. l get a 3 seconds warning - but it takes 20 seconds to get from my kitchen to the loo!!!
Perhaps we should have a seperate forum for the B/B Crisis.
And no - l did not reply to the person who doubted me. l haven’t the time to get into a heated debate as l am always dashing to the loo.
exactly right about 3 second warning and taking 20 seconds or more to get to loo and I agree with your point about having to be near a loo at all times - u just don’t get it unless you go through it - it’s awful - degrading and embarrassing. Your were right not to respond to the ‘ignorant’ person who asked you for proof!!! Some people just don’t have a clue!!!
Thankyou to you all i appreciate all your replies & thanks Andy , i mounted some guts and asked my neuro yesterday who said my new MS nurse will help me towards the right direction , im also inspired by you all so much so im gonna drop the anon , again thanks to all you are a true inspiration to me regards
I have suffered with constapation for a while whatever I seem to eat doesn’t work. I am now expiermenting with laxido/movecol, I took laxido 2 days ago and gone once but it was not good. It gave me about 5 SECONDS to get to the toilet, too soft, will not be taking it again. Before laxido I tried movecol every other day, this was a lot better I went everyday without ergency. I will carry on with movecol every other day.
In conclusion, I would suggest you visit your local GP, and ask him about your problem and see if movecol is a viable option.
Hope this helps.
I cant believe someone doubted you…shame on them…they ob dont realise how the bowels can destroy your quality of life…i suffer terribly would do abything to be able to go to the toilet properly I have just started peristeen and so far its ok…i cant get stool out then sometines i get the runs with no warning…mainly its not being able to go to the toilet though Ask your gp to refer you to a continence nurse…peristeen is for people with probs like ms and whether they are constipatef or have the incontinence issues…have a look online its made by coloplast…x x
I’ve been seeing a gastroenterologist for about 18 months before MS even became a suspicion and when I did get dx with MS I asked my gastro if I’d been mistaken - apparently unrelated! I suffer from urgency but also the going 5 or 6 times a day can be problematic, especially when you’re badly underweight.
Needless to say, it “looked” like crohns as I have ulcers BUT all tests are fine so it’s been really confusing and stressful. So, I’ve not been discharged yet… Anyhow, I decided to try LDN, after 3 months of taking it I’m about a 1lb away from my ‘old’ weight So I’m going to ask my consultant to prescribe it for me.
It’s a nightmare having bowel trouble, male or female, it’s embarrassing! I’m thankful that LDN is helping me…After being continually told it’s IBS (but your weight loss is not consistent with that) you start getting stressed beyond belief, I think the gastro didn’t discharge me as I said I was puzzled because I’d been told I had likely PPMS and the steroids had only really helped my tummy - sometimes it makes you think modern medicine means they just don’t really know yet! Oh yeah, the MS steroids they give you are also used for crohns.
I did cut out gluten at the start of last year as my tummy had started to get bad and I had started home baking… given my Mum is a coeliac I assumed that was the problem! I do eat a little gluten now BUT I still don’t eat break or pastry. I noticed very quickly after stopping it that my sleeping patterns improved - I would say from a personal perspective, we all eat way too much gluten!