Hi, sorry the best of subjects but there’s not much about this condition that is. I’ve been finding that for the last year or so the only way to open my bowel is to put gel on my finger and hold the opening open, does anyone else do this? What is the alternative? My stools are usually small hard pea like so I can then just kind of poke them out !! I’m now doing this 2 or 3 times a day. Am I causing myself harm poking around in there ?? Like I say does anyone else do this and is there a solution. It doesn’t seem to make any difference what I eat, I just can’t make the opening open naturally.
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Hello LucyAnnie
No, you are not alone.
Don’t worry about a) what you’re doing, b) that you are hurting yourself, and c) that you are the only one.
I did that up to 3 times a day for several years. And ended up with piles, rashes, soreness, just horribleness. But in some ways, I was making it work for me.
The fact is that my sphincters will not open by themselves so the only thing I could do want to take matters into my own hands.
I tried Peristeen - a rectal irrigation method (there’s another called Qufora, try googling them to see how they work). Also mini enemas, neither really worked as I still couldn’t remove the detritus without manual stimulation.
Eventually in June 2017, I had a colostomy. You can if interested read my whole story - search the term ‘my colostomy’ and you’ll find it. Or PM me if you want to talk about options and solutions. I’m actually not right now a big proponent of the colostomy option. I suspect I should have examined the ramifications and possible downsides better.
The biggest problem is that one of the original issues, ie slow transit and a massively stretched bowel (because of years spent with constipation) means constipation remains a problem. And there are one of two others. But, basically, I would recommend trying and persevering with irrigation methods.
You might find they don’t work for you. You might find that you can continue your current bowel evacuation method.
All the best.
Sue
Aww Sue, thank you so much for taking the time to reply, you have no idea (well you maybe have) what a relief it is to hear someone else has had to do the same. I’m due to see my ms nurse beginning of April so I’ll discuss options with her. I’m just so relieved that I’m not totally mad for doing what I do. Thank you, I could hug you !!! X
Hello, I have similar problem. I create a ‘wodge’ of loo paper and use it to manually massage the area around my anus. I find this works for me. My muscles have something to push against and the sphincter opens. It does sometimes make the skin sore and bleed a bit. Sometimes my stools are softer and come out normally, without me doing this but 3 times out of 4 I use the loo paper/massage method and have for quite a few years.
I find that I go from constipated to very soft every few days.
I did notice though if I drink plenty of water things are far better, I know that I just don’t drink enough water and it’s something that I’m trying to get into the habit of doing more.
In fact I would suggest that it’s not drinking enough water that is probably leading to my constipation more than the MS.
I do feel sometimes that I just have to sit there and leave gravity take it’s course, it’s like I cant push from my bowels if that makes sense ?
Interesting. I’ve been having awful ‘stitch’ like pains where my appendix used to be for a few years on and off. Painful .
Visited Dr this week, thinks all the meds I am on is causing a backlog!
I eat a very fibre rich diet and drink loads of water but poo pellets too.
Dr gave me sachets of magrogol and booked me in for ultrasound scan.
Been taking 1 sachet per day, no real improvement so moved up to two.
Lucyann why don’t you speak to your Dr , may suggest magrogol. Or you could try ortisan from the Dutch health care shop.
Hope things get a bit easier.
Hi, thanks for your reply. I also get that stitch like pain, I had kind of worked out it was a backlog of hard stool. I have tried these drink sachet but didn’t get any improvement, it did make it softer but I was still unable to get it out. Oh we’ve just got to laugh haven’t we !!!
Same boat here. Really awful problem. I take 2 paediatric movicol at night and also procalapride - I think quite a new bowel med.
i also have porridge for breakfast with linseeds, chia seeds, cranberries and sultanas.
Also magnesium helps as its side effect is diarrhoea- not a chance but does soften my poo.
Still occasionally manually evacuate which I hate as I scoop a load out and think I’ve finished and leave the loo only have to run back a couple of minutes later - fast.
Also occasionally suffer faecel incontinence - isn’t MS just so dignified!!!
Hope you manage to find something that suits
Min xx
Oh god, I am so impressed with all of you who’ve ‘come out’ about their bowel problems. Many of you know I had a colostomy because of being unable to open sphincters (obviously I said so earlier). Because I’ve continued to experience constipation and diarrhoea, and continued to take Movicol and Senna, eventually I had a CT scan of the bowel. Oh I wish I’d done this before the colostomy. Essentially I have found that I have what the colorectal surgeon called a ‘capacious’ bowel. Due to years of constipation, it’s stretched massively. So it seems I’m doomed to suffer a slow transition through the bowel, added to a massive space in which to store poo, I am literally full of *it. So still have constipation and diarrhoea. Plus have lost a bit more core strength. And have a stoma to take care of, which behaves like a small baby, a very demanding small baby.
So if you are struggling with constipation, and so many of us do (coupled with its best friends, diarrhoea and incontinence), try your damnedest to sort it out. There’s Movicol / aka Magrocol / aka Laxido, Senna, soluble fibre, linseeds, water, diet, whatever you can do to make your poo softer, but preferably not too soft, because that’s really difficult to expel ‘naturally’. If that doesn’t work, try glycerin suppositories, mini enemas, bowel irrigation, whatever might work, try it.
If you can’t open your sphincters no matter what, find a way to get them open (ie digital stimulation), but preferably a method which doesn’t leave you with piles, a sore bum, bleeding or a rectal prolapse. (All of which I had.)
Your last resort ought to be colostomy. And that’s not a complete solution, because if you’ve had years of constipation, chances are the creation of an alternate means of removing the excreta from your body won’t fix the underlying problem.
If you are managing to poo sometimes, or managing self stimulation by whatever means, and it’s not causing you problems, then carry on. Don’t feel embarrassed about discussing it, with your doctor, your MS or bowel and bladder nurse, or on here.
You are not alone.
Sue
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Dear LucyAnnie et al,
For the last ten, plus years, I just can’t seem to get my brain to tell my bottom muscles to do their thing. This and codeine makes constipation inevitable.
In no particular order, things that helped me:
Stopping eating meat and no cows milk (best thing ever for my constipated and non-functioning bottom muscles),
Senokot (every night, sometimes three!) or movicol.
Being referred, by my ms nurse, to the ‘poo’ nurse (sorry, don’t know her title but she was fantastic and gave me an irrigation system),
Using the shower hose (gently and set to warm),
and drinking tons.
Just another MS symptom which is good to share. Warmest thoughts to you all (and to your nether regions), Ali
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Hi Ali,
Can I ask how you are getting on with the irrigation system the bowel nurse gave you, that’s something my ms nurse has suggested but I’ve been too embarrassed to go back to her and ask for a referral, stupid i know. Thanks for your suggestions.
I really should drink more water than I do but I run to the loo often enough as it is and my water works do demand a sprint as they don’t give me much notice. why can’t my bladder and bowel compromise and then maybe they’d both work normally !!!
Hiya LucyAnnie, I have bowels problems from going minimum twice to maximum five times a day, to stop any bowel movement at all, no wind, nothing, the stomach swells up and it results in me having the pleasure of lying on a theatre bed watching my bowels getting washed out to remove the twist ten times since Oct 17, I take magrocol every night and have a enema once a week, I am on the Christmas card list from the Western hospital, one doctor says operation next, then next doctor says no it won’t stop it, just a perk of having MS, at least I’ve the cleanest rectum in our village as can be seen by anyone who wishes to have a look up, Brian
Aww Brian, I’m sorry your bowel is so badly behaved but so glad you’ve still got your sense of humour !!! I think I’d rather have a dedicated car park space than a Christmas card from the hospital though. I hope your doctors come up with some kind of solution x
“Drinking Tons”
I definitely agree this helps.
My bowel movements are far far better if I keep hydrated, it even helps with my headaches, apparently constipation can also cause headaches ?
It’s just getting into a pattern of drinking a glass of water regularly, which I do find a bit f a pain as I only drink when I feel thirsty, but I know in myself that I really don’t drink enough throughout the day.
Hi LucyAnnie How can it be possible to read your initial post and feel so relieved and happy. I have been going through this since end of December and have put off seeing my GP or speaking to my MS nurse out of fear and worry and hoping it would just get better. I have never been a daily visitor to the loo but every other or two days I have had to have some vaseline with me for my index finger to get, as you say, little balls out. It’s like they get so far and then stop till I dislodge them slightly and then slowly they come out. I was so worried but realise now it must be an MS thing. What a relief in a funny and sad kind of way. I will carry on reading the other replies to your initial post now. 
Hello Anon
Don’t use Vaseline to agitate your rectum. Try to overcome your embarrassment and ask your doctor to prescribe some water based lubricant. If you can’t do this, buy KY jelly or some other lubricating gel to use instead. It’ll be much gentler on your bottom.
Forcing yourself to start talking about it is a good thing. Eventually you stop being so shy. And knowing that you are not alone helps so much.
Using something like Magrocol/Movicol/Laxido (sachets that you mix with water), drinking loads of water, taking Senna, eating soluble fibre, linseeds, plenty of vegetables will all help.
Best of luck to all you bottom warriors. Keep trying to win the constipation war.
Sue
Dear Lucy Annie,
Oh dear! I have had the irrigation system for three months now but I have had toileting issues for at least ten years. It is quite straight forward to use. In the first instance I was supposed to use the system every morning. But…and I know the nurse will tell me off…
It is a bit of a palaver compared to using the shower hose and luke warm water and slightly less effective than the shower, which I have been doing for the last five years (whilst I was awaiting referrals, colonoscopies etc). I also hate the fact that I am spending nhs money and that the gadget etc are not recyclable. They would like me to get a new bag every month and throw part of the system away each day rather than wash it out. I have been avoiding discussing this, for fear of sounding silly and ungrateful. It can be a brilliant answer for some people but does take a commitment. With so much other stuff going on, currently I have ignored my toileting issues. Your post though has reminded me of my commitment to the irrigation system, so as of tomorrow I will try it again. Kindest regards Ali
Hi, thanks for your post, the great thing about this forum is we’re all in the same boat and I for one find it so easy to say things on here that I don’t even tell my husband. We’re all strangers but best friend’s at the same time. I really am happy for you to get some comfort from this conversation and I mean that most sincerely. Hope you and I find something that works for us, good luck and best wishes xx
Lucy Annie
Going from poo to wee on this one. My MS nurse told me I had a sensitive bladder- poor thing. I know totally the wrong thing to do I stopped drinking very much so I didn’t have to go to the loo so much. That is until I had bladder Botox - what a transformation as I can now drink over 2 litres a day. Which will also help with my poo problem
hugs
Min xx
Hi
Here’s a couple extra suggestions. First, get a Squatty Potty (the advert is brilliant - This Unicorn Changed the Way I Poop - #SquattyPotty - YouTube), And second tip, the bowel is most active within 20 minutes or so after eating, especially breakfast. So get in the habit of sitting on the loo shortly after breakfast, as it could help stimulate your bowel.
Dan