Severe IBS flare ups or something else? I’m miserable here

[bagheera92]

in 2020 I began experiencing IBS symptoms. I had a colonoscopy which ruled out anything else and confirmed IBS.
i was prescribed mebeverine 3x a day before meals which seemed to help along with me eliminating my trigger foods.

i am now currently experiencing an IBS flare-up that is going into three weeks, beginning after I ate a fish bite. Previously, my flare-ups would only last hours to a few days, but they are now lasting weeks and becoming much more severe. A few months ago I had to go to hospital after 111 told me to because of the pain.

I have severe abdominal pain from my belly button downwards, which comes in waves like contractions. The pain feels very similar to labour pains and is so intense that it keeps me awake most of the night. When I have a bowel movement, I experience stabbing pain in the lower right side which makes me feel dizzy and faint. The bowel movements feel like passing razor blades or acid. I now bleed from my bum when I pass a bowel movement. I I have severe gas that wakes me in the night.

My eyelids are red and puffy and feel horrible and gritty Ive bought some eye drops for them . I have also started getting painful sores inside my lips that look like holes. (Not a cold sore)
I will attach a picture. Will need to wait for Mumsnet to approve it

Even foods which used to be safe now trigger symptoms. I am scared to eat due to the pain and losing weight. I am utterly miserable and exhausted all i want to do is sleep. I can’t remember the last time I was pain free. I’ve been back to the GP this week she gave me a lecture saying IBS can’t be cured but she’ll do bloods and calprotectin anyway.

the bloods came back today absolutely fine.
no calprotecin results yet.

im not asking anyone to Diagnose me, but has anyone experienced flare ups with IBS that have lasted longer and longer and got more severe ? If so any advice or recommendations on food ?

foods I can’t eat:
Red meat
Vegetables
Not to much fruit
nothing to high in fiber
Anything sour or salty or sweet (chocolate etc)
Can’t have caffeine
Anything to hot in temperatures
Anything Spicey
Nothing fried
No nuts or grains

Have you a coeliac screening test?

No I don’t think so should I ask my GP about that ?

Absolutely. Do you have any issues with fatigue, headaches, bloating, heartburn or reflux?

Have you been tested for Chrons disease? There’s a strong association with mouth ulcers.

My eyelids are red and puffy and feel horrible and gritty Ive bought some eye drops for them . I have also started getting painful sores inside my lips that look like holes

That combined with the other symptoms sounds like a Crohn's disease flare or another inflammatory bowel disease flare, not IBS. You need further investigation - your condition has clearly deteriorated since 2020.

Also, for reference Crohn's disease can affect the small bowel which isn't surveyed during a colonoscopy (which only looks at the large bowel).

https://crohnsandcolitis.org.uk/info-support/information-about-crohns-and-colitis/all-information-about-crohns-and-colitis/symptoms/symptom-checker

I do get heartburn and indigestion yes! Gastro told me that’s part of my IBS. I briefly looked at allergy and intolerance testing at the Nuffield hospital and going private on that desperate

It also sounds like you might have a fissure, sorry. With those symptoms you should have been examined.

I will have to google what that is 😊

This sounds like Crohns, colitis or microscopic colitis. You need another colonoscopy with biopsies.

https://www.nhs.uk/conditions/anal-fissure/

I am really hoping my calprotectin levels come back raised and hopefully then the GP will refer me to gastro. I know that sounds bad but I’m not 100% this is IBS. I’m just so poorly by 3pm I’m ready for bed!! And my GP will not refer me unless this level is raised. She said to me “IBS cannot be cured it’s about management”
hes I know that and I previously managed it and now it’s affecting my life much more then it used to !!! She then said try buscopan. Like I already haven’t.
Has the picture of the sore in my lip been approved I’m not sure I can see if it has ?

All
of you are making me feel better and that it’s not just in my head. Like i said I don’t believe that this is IBS anymore. But the GP also said IBS cannot turn into chrones or anything like that

I'd be asking for a sigmoidoscopy and perhaps an endoscopy or gastroscopy as well. That will give a good look to the upper tract and also any areas they may have brushed over last time.

Is the constipation or the diarrhoea worse? Are you under a gastro consultant as well?

Did you tell the GP you're passing blood?

Crohn's can be missed and GPs are very far from being experts in IBD (inflammatory bowel disease).

Yes we can see the picture. That's partly why some of us are commenting that it sounds like a Crohn's flare.

You can ask for a second opinion from a different GP, but write down all your symptoms and consider completing the Crohn's and Colitis symptom checker and printing the results to take with you.

Sounds like you need a second opinion. Can you afford to go private and see a Gastroenterologist?

My sister had Crohns and it was often triggered by different foods at different times

Your GP sounds a delight. I have IBS and whilst flare ups can be horrible they don’t last weeks. I’d be asking for testing for crohns this can occur at any moment I’ve been tested a few times for it. I really hope you get some answers soon and pain free xx

That’s definitely a mouth ulcer, common with chrohns apparently. IBS shouldn’t be lasting weeks, you need to be seen again.

IBS cannot be diagnosed until other conditions have been ruled out. With the symptoms you are having Chrons should be at the forefront of the GP’s mind, especially with the mouth ulcers. They certainly shouldn’t be presuming it’s IBS.

I’m just going to answer everyone in one answer ha.
im not under gastro ; the GP said she may refer if my calprotectin comes back high
it starts with diarrhea, I go to the bathroom, then I really need to go to the bathroom again within the hour and I’m constipated.
when I went to my GP appointment I wrote a not in my phone with all my symptoms and how it’s affecting me because I was so embarrassed I knew I wouldn’t be able to talk properly so I wrote it down for her . I did include about the bleeding.
when I did my calprotectin sample it has clear blood in it

I have looked into consulting with a private gastro consultant tonight at the spire and Nuffield. Also food intolerance and allergy testing. I may look into a medical loan if I have and meet the requirements I can’t go on like this
a big part of my husbands culture is around food! And he cooks us wonderful meals, that I can’t even make eye contact with or ile be on the loo doubled over in pain bleeding for 3 months

Thankyou , my flare ups used to last hours to 2-3 days MAX

I did have a camera back in 2020. They said there was ulcers , but biopsies confirmed it wasn’t chrones or colitis.
i was shocked because the consultant said ulcers are normal off the bowel prep
and he said because the biopsies of the ulcers came back normal it’s IBS & he put me on mebeverine.

I’ve had many many mouth ulcers in the past off drinking a cup of tea to quickly or eating food that’s to warm (that’s when I could) but these ones on insides of my lips have only started since the flare ups got more severe and longer

@bagheera92I meant mouth ulcers

2020 was some time ago now.. with your symptoms as bad as they are you should really push for more tests. Were the symptoms back in 2020 as bad as they are now?

No not half as bad !! Back then , I would eat one of my danger foods and I would have a bad tummy for a few days max. I went to the GP and I had a raised calprotectin so she referred me to gastro who performed the camera.
I got biopsy results, got mebeevrine.

but like I said now. This is ruling my life and has me on my knees with the pain along with symptoms