Hi everyone, im struggling with progressive ms and a neurogenic bowel. Just need some friends to talk to. This has already destroyed my marriage, though like an angel shes hanging in thereooking after me. This despite great cost to herself emotionally. How do you all manage to cope.
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Hi I have PPMS.
I have neurogenic bladder but wouldnt be surprised if i dont have bowel as well as i am always constpated or leaking now.
I am still mobile just. 70 years old female. mad as a hatter lol. Widowed.
Had undiagnosed MS from 2006 but first major syptom 2000, temporary blind which was proven to have been ON.
I just manage i have too. I do have a lady who cleans for me. I get around things. Not more choice to do anything else.
Hi there. Bowel and bladder rule my life quite often…double incontinent and wear nappies, plus have supra pubic catheter. It’s a bind.
Some days arent too bad. I’m going in hospital for a bladder clean and botox next week. Hope it’s successful, as I’m so sick of bypassing and spams.
Keep talking to us and we’'ll support you best we can.
Glad to hear your ex is looking after you…any chance of a rekindle?
Boudsxx
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Neurogenic bowel, oh yeah. Sick to death of my colon. It rules my life. My bladder is a pain in the you know what, but it’s my bowel that’s the bane of my existence.
*** Don’t read the rest of this if you’re newly diagnosed or pre diagnosis - my experience is fairly unusual ***
Severe constipation coupled with inability to relax anal sphincter meant I tried every dam means of emptying the bowel, from all types of laxative (senna, movicol, glycerol suppositories) on to Peristeen irrigation. Nothing worked. For years I relied on digital rectal stimulation. That led to severe piles, a rash similar to nappy rash (that led to my regularly having to drop my pants and lean over a gurney while our GP practice nurse and my husband rubbed their chins and pondered ‘hmm, does it look worse?’)
Eventually, 4 years ago I had a colostomy. Hmm, end of problems? Nope. My bowels just aren’t happy with most foods, they don’t like most vegetables or fruit. Everything has to be peeled, no seeds, nothing raw. Anything too meaty is out. I get blockages, severe diarrhoea (which can last for hours), hard fibrous poo that takes forever to come out.
I often have to get up in the night and change the stoma, it can take a couple of hours. Which is flipping freezing in winter. This week I’ve had to change the stoma 3 times every evening after dinner and ending up at about midnight.
My colorectal surgeon can’t explain it. ‘It’s your condition dear!’ I’ve heard several times over. I’ve seen dieticians, I have/had a perfect diet. (Not anymore!) I’ve now been referred to a gastroenterologist. I’m hoping for a solution.
As if that’s not enough, there’s a ‘rectal stump’. The rectum isn’t usually removed when a colostomy is done - so you have a foot of so of bowel. (This was not something that was mentioned to me until it became a problem.) Bowel tissue creates mucus - the purpose of the mucus is to help poo to slide through the bowel. Most people post colostomy/ileostomy are able to excrete this mucus in the way they would have previously emptied their bowels. But if you can’t to that you need to have a method of removing the mucus, which forms into waxy balls and just sits there, eventually making the bowel bleed. I have to have enemas now every couple of weeks. But as I still can’t actually ‘poo’ the enema and mucus out, I still have to used digital stimulation to get the stuff out. Which makes it bleed and bleed. For several days after each enema.
I wish I’d been able to find a way of dealing with my inability to empty my bowel before the colostomy. I wish I’d known all the dietary problems I could have before (to be fair, some of these are common and some perhaps peculiar to me). I really wish I’d known about the stump before it caused trouble. Some of this could have been talked about before the operation. Or even after. It wasn’t until I had problems.
Oh and I also have skin problems with the stoma adhesive. This is definitely a problem with me, not everyone has such sensitive skin. But I have a rash under the stoma which is pretty nasty and requires careful treatment.
My bowel is horrible. True, that’s been the case for years, I’ve had MS for nearly 25 years and the problems began maybe 16 years ago. It doesn’t get any easier over time.
Like I said at the start, my bowel issues are not that common. Possibly it’s worse to live with bowel incontinence. No one ever can claim that my problem is worse than anyone else’s. MS is unpredictable for us all and those of us with advanced MS of whatever variety have our own particular troubles.
I’m sorry for us all with our rotten MS bowels and bladders. It’s a dire thing to be cursed with. The one and only good thing is that I’m now forever cured of embarrassment.
Sue
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gosh you kind of made me feel better about my issues lol.
WHAT ANNOYS ME is gastroparesis is part of MS or can be i am sure i read an article from that guy you read giovanni something.
The problem is eating healthy is not healthy if you get this. My family laugh at me MUM how can you be constipated you eat a ton of fruit, and healthy fibre stuff… yeh. and what do doctors prescibe for our constipation FIBROGEL.
I have only been diagnosed with constipation down to my MS.
I know its not just that. i have been constiipated before. never like this.
its like pooing out a TRAIN ha ha. even our modern plumbing cant take mine lol.
I have to constantly wipe myself incase i am leaking. god i hate it. and my sister cant understand why i dont want to go out for a meal. It takes me ages to eat. I can only do it slowly. Otherwise the old bloat belly and pain hits me and it hurts even my dog Lucy gets out of my way when i can finally let it go into the atmosphere lol. xxxx ah the joys. xx
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Bizarre. I’ve never heard of gastroparesis before (looked it up - slow emptying of the stomach into the duodenum and subsequently to the intestines). It makes total sense that this could go hand in hand with slow transit through the intestines. Which is what I’ve always been told is ‘normal’ in MSers.
Slow transit through the bowel is clearly something many, many of us experience. This leads to constipation and diarrhoea. Some of the diarrhoea (and probably your leakage CC) is in itself caused by constipation I’ve been told. It’s where the bowel is blocked by constipation and liquid poo can only sneak round the blockage.
What’s different between you and I of course CC is that I get to see (up close and personal, like) the product of my bowel. So what you describe as ‘pooing out a train’, I think looks more like a snake than a train. It’s dense and firm, very solid and I can imagine why plumbing can’t cope!
As for eating extra fibre (and using fibogel for that matter), I imagine that makes things worse, not better. Because I can see what comes from my intestine, I know for example that I have to remove all stalks from salad leaves, even rocket. Even basil has stalks taken off and that’s before being used to make pesto when it’s already shredded. I have to peel everything from cucumber (which I also cut up small) and courgettes to asparagus. Not just root veg.
I don’t eat bananas (constipating), or wholewheat/wholemeal, entire nuts (ok if blended), tomatoes or mushrooms. Anything with skin on (eg peppers) has to be chopped very, very small as does anything too hard like onions. Fibrous vegetables are a nono, like aubergine, even without the skin. I managed with very well trimmed kale, but cavalo nero was a bad mistake. Dried fruit is equally on the banned list (it both has skin on and swells, absorbing water). On that note, anything that swells and/or absorbs a lot of water is either out, or just eaten in very small quantities. So rice (white or brown), chickpeas (pulses generally), anything made with breadcrumbs (stuffing?). Meat that’s too solid, steak, duck, venison, even chicken breasts and very meaty sausages (I cope with chippolatas!). Oh just so very much food is out. And for someone like me who truly loves food, it’s awful.
It’s no wonder we suffer so much, we’re not always very good at talking about our bowels. It takes years of being a grown up and just starting to talk to doctors, family, friends, strangers (not just random people I meet though - I’d be one of those ‘nutters on a bus’!), you all… to be able to confront the problems.
Blimey, doesn’t it help when it’s not ‘just me’ though?
Sue
Yes it does.
EEK looking at what you cant eat i would starve. Gastroparesis, can cause serious bloat (i get), feeling full with small amount of food (tick), feeling nauseous or heart burn(tick), stomach pain(tick).
I made a HUGE mistake Thursday. I asked my lady who comes to get me a salad she came with a BEAN salad. Now i know its good for me so i picked out the soya which i simply cant eat, and crush it down and added it to my smash green salad. BOY its still giving me stomach ache today. Leaking ugh pain and bloat.
I wont ever do that again.
But what do I eat? I hardly eat now. I have lost so much weight, my skin is falling off me. I look like a wrinkled prune.
I went from 11stone 8, (I am 5ft 8) looked healthy, to now hovering over 9stone downwards. Still not classed as underweight on the BMI but not happy, i am starting to look too thin.
Although my BP has gone down lol. Oh gosh i gave up beef ages ago it gave me stomach ache, no sausages, but all i have left is chicken leg and thigh.
Yes when you talk to others with similar it is a bit of a comfort as I know i am not alone, but it was thing i suffer with i wish i did it alone, as i cant imagine someone else could feel this bad. Hugs. xx
Beans!! What more can I say? Bad beans😱!
I don’t / haven’t lost much weight. The trouble is that when I first had the colostomy I was told I could use sweets as medicine. So marshmallows or jelly sweets for diarrhoea, liquorice for constipation. A good excuse to eat jelly babies is difficult to pass up. The jelly sweets were quite hard to give up! Then there’s chocolate. Not that it’s medication exactly, just makes some people (me) feel happier. I don’t eat much of it now, but I fear the damage is already done.
The problem being this disabled is that weight is very hard to shift. Just maintaining my current weight doesn’t take a lot of calories. So losing it would require starving myself. Not that I’m that fat - luckily 5 foot 10 means I can be fatter than I’d like whilst still remaining within range.
I am sick to death of my poxy bowels this week though. Last night I spent altogether about 4 hours in the bathroom - changed the stoma 3 times: diarrhoea! It’s the third night running! MS is rubbish.
Sue x
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Hi sssue sorry to hear its been a bad week. The sweets sound good though. Know what you mean about food. Started 3 yrs ago not being able to eat meat, shame enjoyed my food. Next y day, boring meals same outcome. So for the last year and a bit ive had to eat soup twice a day. Same meal everyday, boring but better than stomach pain. Ms sucks!! But remember your not alone xx
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Thank you. Sometimes it really does help just to know I’m not alone. This has truly been a terrible week. There’s been other bad times, I just don’t think there’s been a week when I’ve spent so very long in the bathroom.
Tonight I’ve spent the whole evening in there. Straight after dinner, wave after wave of vile diarrhoea.
Just hope that tomorrow is a better day.
Sue xx to all my fellow sufferers.