Fibromyalgia, possible MS, and unbearably bad bowel problems (TMI warning)

[BoldKitties]

Not sure where to put this so going with general health. This is embarassing, was going to name change but couldn't and am now desperate. I was diagnosed with fibromyalgia about 4 years ago, and despite having been tried on several medications (currently pregabalin and amitryptaline, previously others) I've been getting steadily worse. Recently been having tremors, numbness in hands and legs, and twitching. Also trouble swallowing (I choke even taking a drink of water) and loss of control of my bowels. So GP has referred me to rheumatology and neurology, mentioning possible MS. Recently got a letter saying that I'm on a wait list for an appointment.

The problem is that my bowel problems have gotten so, so bad lately. It happens from time to time. First time, after a month of hideous diarrhoea, I saw my GP, who at the time said it was nothing to worry about, everyone gets diarrhoea sometimes. The second time it was much worse. I was taking Buscopan, which mostly helped, but there was one day it was particularly bad, and at work, despite running to the toilets, I soiled myself. I was in training at the time. I had to phone the trainer from the bathroom and explain, then slink out of the building with my coat tied around my waist, hoping nobody would notice that I had shit all down my skinny jeans.

This time, it's been going on for three weeks. I can't go to work as can't venture too far from my toilet. This morning it was grotesque (total TMI here). I made it to the bathroom and then exploded. Literally had to bleach the whole bathroom, I was cleaning shit off the walls. Happened again tonight, and although not quite as bad, there was quite a bit of blood also.

Am getting a bit frightened now. If I go back to GP they'll probably say that it's okay, I just have to persevere and wait for my referral.

This isn't right, is it? I live in fear of feeling that now familiar twitching and squeezing in my lower abdomen. The blood has really terrified me. What do I do? Can anyone suggest anything to help control this? I've taken to eating and drinking very bland stuff. Water, bread, some soup. Anything else I can do?

Hi bigarse, sorry, I didn't see ur post earlier, but definitely all suggestions welcome ! I've eliminated crohns, but am now swaying towards what Vix and Nerdy said - colitis. I think I tick all the boxes for that one.Today is the first day since all this started, that I feel really bloated.

Hello bigarse, they've ruled out gallstones for me as none showed on the ultrasound. The bile acid diarrhoea looks interesting/unfortunate.
No one has asked for a stool sample, even when I took some droppings in with me does no one find my droppings fascinating? And lets face it, we can produce samples almost instantaneously

Colonoscopy booked for this Saturday- something to look forward to at last

Right then - another question for my fellow shitheads - when you did the restricted diet before the colonoscopy were you allowed to eat fruit and veg? The instructions I've received are badly written, it says no nuts or seeds, no fruit in puddings or cakes, no potato skins, no pulses, no red meat. But doesn't say anything else about fresh fruit or veg. Confused!

Hi wage, hows your day been? I for one am fascinated by your droppings !!!! But funnily enough, nobody has asked me for a stool sample either. I saw doc today - now have a referral for a gynaecologist fgs. I've had so many things shoved up and down me lately, its ridiculous. What solution have u been given for the 'clear-out' ? I took the moviprep, but kept to the example 'menu' they'd written in the instructions. If yours isn't specific about fruit and veg, I'd avoid it, just to be on the safe side. Are u a morning or afternoon appointment??

has no one had a fecal calprotectin test? my children are disabled and one of their problems is gastro. they regularly have the test (poo in a pot) and in checks (if I'm right) for inflammation in the gut. the problem seems to be in how they then interpret the results. above a certain amount should lead to move investigations but I know that several times that has been ignored and deemed normal in their case. tmi as well but everyone who said about how to collect a sample - we have kept a potty. perch above and then use the spoon (or a ladle) to put in pot. potty is easy to wash and store for next time x

Hi why, I'm not so good today, lots of stomach ache and enormously bloated. How are you?
Been given moviprep. And told by the hospital that I'm overthinking the prep, rather than the instructions being vague. So I can have fruit as long as no skins, e.g. An apple. Ditto veg. But she couldn't answer whether pork is red or white meat! I still maintain the instructions are vague. Am going to buy some sudocreme in anticipation.
Thank you for the interest, today I'm a not so solid 6.

Hello bigarse, thanks for the suggestion, I could do with an xl size potty!! However no one is interested in my ploppings samples
I know that there are mixed views on MN about zoflora, but it's been a godsend in keeping my loo relatively clean and hiding the stench

Hi all, wage sorry you're not so good today, I'm betting the weathers not helping either? I'm not too bad today, touch wood. No, bigarse, nothing like that offered - not yet anyway. The potty trick is a good idea though - I'll do that if they ever ask me for a sample. Btw, really hope Bold is doing ok - if your about my fellow shithead, let us know how ur doing. Un-mumsnetty hugs for everyone in this situation

Update - I survived the colonoscopy with only a little gas and air. Guts apparently look "sparklingly" healthy with a small amount of wear and tear, no tumours or polyps. Got to wait now for the biopsy results. A suggestion that microbial colitis could be a possibility. So I'm a bit reassured on one level about the lumps or lack of, but still no answers.
But the moviprep is taking a while to get out of my system!
How are my fellow shitheads today?

That's great news wage , I meant to wish u good luck, but memory is going now as well !! You're braver than me, I kept asking them to top my sedation up !! That's good news - how long before you get results of the biopsies? I've had a fairly good week - still a 5/6 on the scale, but not on the toilet 🚽 so much. Touch wood it stays like this for a while !!

Hello why, I'm a 7 today, moviprep has aggravated my innards something chronic. Here's to the more solid state

Hi all. wageslave I really hope you've picked up a bit. Just wanted to let u all know, my colonoscopy results came back, and there are no abnormalities in the large bowel. Presuming this means the small one is also clear. No results on the endoscopy, but possibly the letter could be referring to every procedure. Will check with doc. Still between a 5 & 7 though :(. Hope everybody is doing ok, and that you've had good news also wage xx