Hi guys, I’m sorry if this has been covered elsewhere. I tried to search but couldn’t find anything. I would like advice/personal experiences from people who have the ‘chronic constipation’ symptom of this bloody disease. I’ve been chronically constipated as (apart from optic neuritis) probably my main problem symptom. It is common in MS patients but seems somewhat neglected by the drs (or at least in my case). I’m literally at my whitts end and have come to the conclusion laxatives don’t work like they do in none MS patients and neither does change of diet. I would like to know what others have tried. Is there anything that is worth a try? Maybe certain combinations etc? Basically anything that may help. I’m sick of looking constantly pregnant and feeling uncomfortable
Assuming you’ve tried all the dietary remedies ( more fruit/fibre/water and so on) there are a number of things that may make life easier:
-Stool softeners like lactulose, make it easier to go by making the offending material , well, softer.
-Fibrogel - an orange drink that also helps going easier.
-Suppositories prescribed by your GP .
-A bowel irrigation system , like Peristeen or Quofora; these are a bit of a do it yourself colonic, sometimes fiddly if you aren’t especially dextrous, but again, they do work.
If you are uncertain as to how to proceed, look up your local continence nurse specialist. They are commonly hugely sympathetic and are a source of many good remedies and advice when it comes to bowel problems.
Hope this is of some help,
Hi arcticvixen Thank you so much for the reply. I’ve cut out nasties that I know affect MS from my diet and have limited things like wheat and dairy etc but it doesn’t help. I’ve been using prescription stuff and also buying suppositories etc from the pharmacy but they only help for a bit then stop. I chose to buy the suppositories etc because they cost next to nothing compared to the cost of a prescription. I’m in hospital at the minute and the doctor said have I tried the right thi gas in the right combination… what does that actually mean? What is the correct combination? I find the only thing that really helps are phosphate enemas but I just cant see how it’s good to have this as the main option. I just think there must be another way.
This is a real bugbear for many MSers, bowel trouble is a curse. And often a literal pain in the @rse.
Nia has suggested many of the possible remedies. They’re a mixture of trying to sort it from the top down, and the bottom up.
I’d add Movicol to her list, it’s a stool softener as well as laxative, so can help to make it easier to ‘go’. It comes in sachets that you mix with water, (it’s often called Laxido or Magrocol). Several flavours are available, personally I think the orange flavour stuff is vile. There’s also a lemon/lime flavour that’s just labelled as ‘sugar free’, that’s fairly bland. I recently discovered that Movicol comes in a Plain variety - it’s just like drinking water when mixed.
Senna tablets can help as well.
People often use things like linseeds to help with the recalcitrant bowel - sprinkled onto your cereal. Obviously there’s the usual dietary things like prunes, dried apricots, bran fibre, vegetables, grape juice. But as you’ve said, they don’t always help.
As Nia also said, suppositories - these are glycerine suppositories, not all that easy to get up there as they’re slippery little beasts, but they can work very well. (You can even get them off the shelf in a supermarket if you don’t want to get them on prescription.)
If they don’t help, you could try micro enemas. These come in tubes that you snap the end off and squeeze the liquid contents into the rectum. A bit of a stronger reaction than suppositories, but for occasional use they do work. Plus, theyre easier to get in the right place. They are only available on prescription.
Then as Nia also said, anal irrigation: Peristeen or Qufora can work.
It’s a good idea to try and work out exactly what your problem is. Lots of us have very slow movement through the bowel. This of course makes adjusting laxatives, diet, etc difficult, because it’s not what you take that day, or even the day before that impacts on your bowel, it can be days ago. So that’s hard to manage.
Another problem is that the nerves controlling your bowel/rectum/anus can be affected. There are two opposing sphincters that have to operate in unison for bowels to work, one sphincter has to relax, while the other tightens. When these don’t work in conjunction, it causes trouble. Some people become incontinent whilst others constipated.
There are other non MS problems which can add to the trouble, for example twisted bowels can make the problem worse. There’s not much you can do if your intestines don’t run nice and smoothly. But the general advice is the same regardless of the root cause.
Constipation of course leads to haemorrhoids and sometimes bleeding from the anus. Which itself can cause problems.
If you have a bowel and bladder service, ask the nurse for help. If you’ve not been referred, ask your MS nurse or GP to refer you.
It’s really important to try and find a way of emptying your bowel. In rare cases, the solution is very drastic. That’s what happened to me - I had a colostomy 2 years ago because I couldn’t make my bowels work no matter what I did. So talk to a specialist nurse if you can and try out all the different options. Don’t keep quiet and just hope you’ll be able to resolve it through diet.
Hi Just a couple things to add. Get a squatty potty (search youtube for the ad, it’s brilliant). Also, our bowels are most active in the half hour after eating, especially breakfast. So maybe quarter of an hour after eating a meal, go sit on the loo. This may help wake up your bowels. Dan
Hi depending how many prescriptions you get in a month it maybe better to get a pre paid card, I know it’s over a hundred pounds but I found it a god send, it costs about one hundred and four pounds at first and if like me I get a lot of of prescriptions it works out a lot better. I don’t pay now as I have an under active thyroid and it’s now free but before I was diagnosed, it was well worth it. Kay
(for men only) bizarrely when I’m having a wet shave I always have a need to go to the toilet - not a problem but it is I suppose a bit odd. Also find if constipated if I drink loads of water until bladder is full to an uncomfortable capacity then it seems to get things moving.
Hi again With your diet, what changes have you tried? Obviously the usual recommendation is to eat high fibre things, like adding linseeds/flaxseeds, to help loosen things. But I also find there are certain things that make it worse. The biggest culprit for this is meat. If I eat a lot of meat, it definitely slows things down. Dan
I find meat of any kind can take some shifting (no pun). But drinking at least 2Ltrs water or juice, not tea or coffee, really does help to cleanse.
At my wits end last year, I went private as some blood bits were seen. Consultant I saw told me I’m wasting money because it is spinal damage of PPMS causing the problem. The only good to show for £200 was a written recommendation for Picolax and refer to gastro at hospital.
After enduring a colorectal camera, a few small haemorroids & a couple of polyps were found and removed.
I was able to tolerate the Picolax preparation (rare for a GP script, mine was from my GP after a letter from the private Consultant.
I had a good chat with Sssue (her advice above can save you lots of trying this & that. She knows her stuff through personal experience.
Now I make sure I drink a lot of juice, sprinkle Milled Linseed from @ldi I (deffo milled not seeds), into or into any cereal, salad, drinks etc.
Eat fresh dark green veg every day. Spinach, Cabbage etc.
If no natural movement to unblock after 2 days, take either a Bisodol or drink a Laxido before bedtime. Make sure you’re close to a loo, it will either start tummy ache before, during or just after breakfast.
If this doesn’t work for you, then repeat again after 2 nights with the same procedure.
Best of luck,
I saw my incontinence nurse recently. We talked at length about my issues with constipation which i have never had in my life until the last few years getting worse as i slowly progress.
Some good advice above which she talked about too. the other thing which does work is a low stool. You put your feet up on the stool as your on the toilet and it really does work.
I wont take fibrogel it has aspartame in it. Not for me thanks, just a personal choice.
I eat a ton of fruit and veg. The one thing guaranteed to get me going is BEETROOT, and dried figs. guaranteed. Not necessarily together lol. Also that first cup of coffee in the morning triggers it for me and i know it works for a lot of people.
WALKING too, i know it can be hard to do that, but i have upped my walking, its manic to do and leaves me in a lot of pain, but it does help.
other than that i think it more or less covered. check you meds too as some do you make you constipated.
I just use my diet now i dont take any aids just nature and with the right combination it seems to be working at the moment for me. Its been a long haul but after the visit to the nurse i have gone pretty well.
I find the more constipated I am the more i am likely to get a UTI no idea why that is.
gluten too i took that out, wheat, and SOYA, soya for me is a no no. It blows me up lol. xxxx
Hello Sunshine First you need to empty your bowels Get a prescription for Macrogol you will bet a box of 100 First day take 2 with water, no action Next day take 4 with water, no action Next day take 6 with water, no action Next day take 8 with water, stay near toilet and Sunshine you will have a mighty crap. Open the windows and do not light up. Once that is sorted take one a day just to keep the motions. After a few weeks you will get more regular and will not need them. I now take figs, you can buy them from the supermarket, 4 a day they come in packet Got caught out this morning DID NOT QUITE MAKE IT. Undies in washer But happy.
i understand the misery of constipation. Such a basic natural thing to do to have a big old dump. But sadly ms likes to rob us of these seemingly easy natural things. Personally after trying lots of different things I have 2 dulcolax and find that normally gets things moving. Sadly one dose does nothing
I tried everything and found the only thing that works for me is Aloe Vera Colon Cleanse.
It comes in small tablets and available from health food shops.
It took a few days in the beginning to work, but it’s been a great help for me
I second the squatty potty idea. Also, Macrogol 4000 - you can buy it OTC branded as Dulcosoft liquid. It is clear, tasteless and non-disgusting. It may be the GP can prescribe also, but I think they generally prefer the different form of Macrogol that goes into Movicol - that they can prescribe, as others have said. Here’s a paper that covers the safety and tolerability of Macrogol 4000 - it seems very safe and doesn’t seem to stress the gut.
BY the way, I have heard a gastroenterologist quoted as saying that people suffering from IBS-C (the sort of IBS that mainly does constipation rather than the other thing) that too much fibre can actually make things worse. Fibre is good for us all, but some can tolerate it better than others, and it isn’t always the answer,particularly if your gut is inclined to turn to concrete when it’s in bad mood.
To end on a upbeat note for those of us who are more inclined towards constipation than to the squits: at least we can usually leave the house safely!
Another thing to possibly look at. Are you on any medication for your bladder. If yes, it might be worth looking at this. The medication I was on for my bladder turned out to be making me constipated. A change in tablets, revised dosage and my constipation problems reduced dramatically. I still am careful with diet, ie prunes and porridge in the morning, prune juice before bed. Psyllium husks for roughage. Senokot tablets if I feel I’m struggling. Hope you find something that works. Derek
I have no end of bowel bother!
Laxatives of any kind either makes me incontinent or they don’t work at all.
I’ve tried 2 irrigation systems , Peristeen and Braun, the Braun is less fiddly but neither work for me because as soon as the water goes in my bowel spasms and forces it out again before it can do it’s job.
I saw a brilliant nurse and consultant at my local bowel dysfunction clinic and they advised that because of where my nerve damage is laxatives won’t work and they recommend a colostomy. I’m a bit of a coward so I’ve not gone there yet but I have found some things that help a bit.
Sourdough bread. It makes things move without making me so loose I have an accident. I’m not sure how but it’s classed as a 'fermented food so maybe sauerkraut, kimchi, or kombucha would also work but I like sourdough so I’ve stuck with that. Maybe try having it for breakfast.
When my bowel feels really full, normally after about a week, eating a really big meal seams to get things moving.
Also my own toilet so I can take my time and feel relaxed.
And lastly moving. I know this one’s not easy but and kind of exercise helps. My walking is really rubbish but I find some activity better than none.
I hope you find something that helps.