Hi all. I hope it’s OK to ask about this I will try not to be graphic. I started with my CIS episode on the 2nd October and I am yet to get a diagnosis but the lesions and O bands in CSF were present. However since 4th November I have been having amother issue and I wondered if it’s something related or even something else completely. I have been suffering with awful intestinal cramps/spasms. It started for me as a pressure in the area around my pelvic bone and made me feel like I had to pee I got tested for UTI and PID and both were negative. Then it got painful on the left side just below my hip bone. Since I have had diarrhea for 14 days now and when I eat it’s like I can feel the food passing through my intestines with discomfort in the area around and under my belly button. I told my neurologist but she dismissed the feeling saying it wasn’t anything related to MS. I have been to see a gastro doc and she took blood and samples and I have a follow up on the 6th Dec. I’m not currently taking any medication. I am so uncomfortable all the time I don’t know what to do. The only way I feel better is by not eating. I guess my question is whether anyone else has had something similar?
Honestly don’t worry about being graphic, we are made of strong stuff here and many of us have had our own issues regarding bowels.
When you say the gastroenterologist has taken blood and samples, I assume that includes poo samples? Because it could be an infection or even some kind of food poisoning (although it seems to have lasted a bit long to be food poisoning).
It doesn’t sound like any MS type symptom that I’m aware of, but maybe someone can put me right if that’s wrong. People can have iffy bowels that can include very loose bowels, but full on diarrhoea for 2 weeks seems extreme.
I imagine your follow up next week will help to establish what’s going on.
Hu Sue, Yes I had to give in two poo samples. I’m feeling really down because the CIS episode I had on the 2nd October is starting to resolve and I have almoat all of the feeling back in my lower body and now this… I’m so afraid they won’t find anything or be able to give me something to resolve it… this year has been so challenging and the only thing that I had to focus on was trying for a baby. Now I have to postpone it again because I can’t even explain how uncomfortable I am Only plus side is the weight loss Hopefully I get some updates in a few days
I have exactly the same pain and symptoms as you. I thought I had a parasite infestation, which was totally possible, and if you look into the symptoms of parasites then, if your like me, you’ll be horrified by how many symptoms you also have. I advise not to mention it to the Dr because despite saying “worms are more common than you think” they will treat you like you need committing. I’ve found that sending any sort of poo sample automatically comes back negative, even though the only real way to test is using DNA which NHS don’t do. I sent loads of samples off and then was told by a nurse that if its not in a special container the lab doesn’t even test it… just comes back negative. I was given urine sample bottles! Look up ‘Ellebelle’ who do a complete herbal solution (just in case) and a colon cleanse which may help.
Anyway, I get awful pains in my left side, swollen stomach (which turned out to be years of compacted poo), but now big stomach has returned. I don’t want to eat and sometimes I spontaneously vomit. You’ll have fun with neurologist and gastro… Gastro will say ‘it’s just the MS’ while Neurologist will say ‘what do I know about digestive system?’ I think maybe because MS can impact on any part of your system, the theory that your digestive system slows down so much that poo doesn’t travel through properly, causing major problems under rib cage and the corner of your digestive tract on left hand side, makes sense but there’s not much sympathy out there for our problem.
Also, a hot water bottle helps ease the pain and sleep on your left side so you stomach is above your digestive pain. I’m now using Peristeen system with varying degrees of success. Now the water is getting stuck inside me and the pain in my side is horrendous and every 3 months I get an episode were I can’t walk, sit up, turn in bed, transfer etc and I’m sure its a build up of compacted poo which pushes on nerves? Have a colonic treatment if you can cos, unlike me, you will know your definitely empty and can monitor how you feel from there. Sorry for the bad pun, but it really is crap isn’t it?
Thank you for replying. I am hoping it will go and maybe it was a side effect of the IV immunosuppressive drugs. I had a colonoscopy at the beginning of the year after a perianal abcess suddenly appeared. They found some small ulcers in my small intestine but the symptoms went away so they just assumed it was from antibiotics they put me on for 6 weeks. Feels like a revolving door to be honest… until this year I had never even had the flu now I feel like I live in the hospital
Just finished my appointment with the gastro doc. Turns out they found high levels of inflammation in my stools so now I have to have a colonoscopy on the 27th Dec and not eat certain foods for Christmas. Seems there is a high change I have Crohns and MS. Currently sat on my bathroom floor sobbing…not sure I can take much more
Aw, I am sorry. Don’t cry about it. Try to get angry instead. It’s really not fair that you’ve had the worst year imaginable. And just like we say with MS, it’s not Crohns until they say it is for definite.
But you do have my sympathy. It’s a #@*!
I’m trying to find another emotion but right now i feel like I got him by a ton of bricks. Since January this year. I just want to curl into a ball and forget the world.
Bless you, life can be so rubbish. I am praying that it’s not Crohns. xx