For the last month, I have been having terrible trouble with my guts…intermittant diarrhea/constipation, bad stomach pain along with pain in my neck and shoulders. Also, my fatigue levels are extreme, it’s an effort to do anything (and now the heat!)
I wanted to ask if anyone else has experienced digestion issues…my gastroenterologist thinks that it’s all related to my MS as there is nothing else of note (I’ve had a gastrocopy & biopsies…have inflammed stomach & small intestine, plus a hiatus hernia, but he doesn’t think this explains my symptoms). I know I have lesions in my cervical spine, so my vagus & brachial nerves could be affected…
Any thoughts?
Sarah
I;ve had problems off and on over the years, either needing to go about 3 or 4 times in the space of an hour, or not going for days. I’ve had loads of investigations and they say I have a sluggish bowel, but nothing else. My last consultant didn’t think it was specifically related to the MS but more to the stress that MS brings. It had been really good for about 18 months but just recently its been dreadful again. And I am mega stressed!
Cant really help on the digestion stuff other than speaking to your ms nurse and gp…if they cant find another reason other than the ms as the cause, they need to work with you to manage the problem. Diarrhoea following constipation is often over flow meaning the blockage hasnt all gone and usually needs medication and if an ongoing issue finding a mantainence dose of meds,foods,fluids etc that works for you.
Fatigue is a major problem for me but as I am new to copaxone they dont want to try meds yet but are sending out a physio to teach me exercises that are designed to help manage fatigue. I am game for it as anything is worth a try in my book.
Thankfully as long as I build up with the heat from early morning I am fine with that but I do feel for the many who get floored by it.
Hope you get sorted soon
Pip
I started having digestive problems after steroids which gave me ulcers and kicked off NSAID gastropathy so I had to (permanently!) stop taking the meds for my back pain. I also discovered I was lactose intolerant at the same time; no idea if it is related or not though. The gastroenterologist prescribed omeprazole to sort the ulcers out. It might have got rid of the ulcers, but I was still having painful spasms and nausea. He then prescribed spasmonal forte for what was assumed to be nerve damage from the ulcers. He thought 4 weeks worth would be enough to allow repairs. It helped massively, but as soon as I stopped it, the problem came back. Happened to see my neuro that week. He told me that although most people think of the digestive system as a standalone system, the central nervous system has an input (the vagus nerve) and that problems with it mean that many people with MS end up with IBS diagnoses because the gastros can’t explain their symptoms. He also told me that if the spasmonal forte worked, to just keep taking it. So I do!
Next thing was chronic diarrheoa. I went to see the gastro again, was dx’d with IBS(!) and prescribed loperamide (which is the active ingredient in Imodium). I now take one every evening and it does the trick to slow everything down (and has the extra benefit of allowing me to eat some milk products again :-)). Of course, having one extreme is easier to deal with than swinging between both, but perhaps loperamide might help you when you need it?
If your gastro/neuro/GP is OK with it, I’d have a go at spasmonal forte if I were you - it’s like baclofen but for involuntary muscles (i.e. muscles that you can’t control) and it’s been great for reducing my stomach spasms.
BTW, given that you’ve got terrible fatigue too - it might be a relapse?
Karen x
I also suffer with terrible spasms in my stomach and through my torso making me physicaly sick without any warning,it is terribley painfull at times.
Interesting. I suffered constipation for the past few years but just recently I have diarrheoa every morning and I’ve been getting a lot of acid reflux.
It’s seems to me that if MS can affect bowels then why not digestive system? (although I’m aware that I should go and have it all checked out… if I ever find the energy…)
Karen thanks once again for excellent info.
Pat x
Thank you everyone for your help. I think the spasmodol sounds good, I’ll speak with my neuro/GP
Sarah
I’ve found this thread very interesting. I just came from an appointment with the dietician today (after being discharged from the gastro specialist with “routine IBS”). I was describing pretty much the exact same symptoms to her today, only to come home and read this.
I have not yet been diagnosed with MS, so there’s no telling if my stomach symptoms are related – but maybe I should mention it to the neurologist when I see him/her?
-same here, all of the above, tests with tubes up, down and lots of medication. Im sure it must be lesion related since so many of us suffer similar.
IBS, GERD, and hernia.
I was prescribed Motilium to help food go faster down digestive tract as I also had sickness problems - projectile vomiting. Colefac for the IBS and Omeprazole to reduce acid reflux. All works fine until I try eat a full meal out, and drink at the same time. Now Ive come to realise if I eat little and often Im much better and timing the pills for when largest meal is consumed seems to work better.
All does settle, then flair up for no reason other than perhaps ms lesion relapse?
bren
x
I had all this and went gluten free. 6 weeks later pain free, and i lost 12kilos. No more stomach aches and no more bloating or heart burn BLISS…