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

Okay so, if my calprotectin I handed in this week comes back normal what do you all recommend I do? Should I ask for a second opinion or can anyone think of anything else?
I have a feeling it will and ile be fobbed off as having IBS and be told to take buscopan.

Ask for a second opinion. I most definitely have crohns, and have never had a particularly raised , even when admitted in a massive flare. My gastro just says that some people don’t. It’s less likely to be raised if the inflammation is in the small bowel too apparently. I hope you can get some answers and relief from things soon.

Mouth ulcers are also a symptom of coeliacs disease because it's auto immune it doesn't just affect the gut.

It does sound like crohns, especially with the mouth sores and eye problems. I’d insist on a second opinion - specifically a referral to a consultant. Also insist on a celiac screening. Sounds typically like a fob-off and it’s not good enough. IBS is a lazy diagnosis, you would not be feeling this bad.

Thankyou for your replies . I most definitely will ask for a second opinion . And I do feel totally fobbed off with the IBS diagnosis.
I’ve felt a bit better today although I’ve not been able to go to the loo and have very bad trapped wind. I’ve also got a appointment for private food intolerance and allergy testing along with a blood test for celiacs next week at the spire

This was all coeliac disease for me, including the mouth ulcers. IBS is not a diagnosis, more a catch all for a list of symptoms with an unidentified cause. You'll be struggling to absorb nutrients whatever digestive issue this turns out to be, so please ask them to test your levels of b12, folate etc too as well as testing for coeliacs, crohns etc. Please keep us posted.

You’d be better off spending that money on a private endoscopy and/or colonoscopy OP. Although you really shouldn’t have to go private, you need to speak to a different GP and basically insist on getting investigated properly. IBS is not a diagnosis that can be made without excluding other causes and a test done 5 years ago is meaningless now, especially as symptoms have progressed.

Thankyou I will. My GP did bloods . Fill blood panel , including inflammation.
before I booked a private blood test for celiacs today I asked the receptionist at gps if they had some bloods for this and she no 🙄
im awaiting the calprotectin results . And im still going to see a different GP and beg for referral to gastro for a camera

The GP likely would have been able to book a test for coeliac, GPs do it regularly, sometimes receptionists aren't aware of this as it isn't their expertise. NHS GP's can definitely test for coeliac. But if you've booked it now for private see what those results show. When that and the calprotectin come back, push for a gastroscopy or sigmoidoscopy as well to have a look at everything. Hopefully the investigations start to show some more clarity on what's going on.

Yes I thought NHS gps could. If I’m honest I’m annoyed the GP didn’t include that in my bloods and also she hasn’t requested a FIT test for me when I specifically told her one of symptoms is bleeding

If you have any way to contact the GP online like a form or text message feature try and ask for FIT to be added in for another round of FIT tests. Perhaps to use it to push them to get some things going. The stool sample has probably already gone through so it might have to be a new sample.

Or would you rather do that one private as well? If you've done a stool sample for them then perhaps do it that way?

You should be aware that you need to have been eating gluten for an extended period for a coeliac test to be accurate. If you've been restricting your diet then the test results may not be valid.

But I agree that camera tests would be the more suitable path to pursue.

I’ve not cut gluten out of my diet . I’ve essentially been living off white bread , ham rice all very bland foods as they were my safe foods. I never even thought of celiacs until I asked for help on this thread but when I’ve read up on the symptoms I’m suspicious of that now

Your GP sounds awful! They absolutely can test for coeliacs and a FIT test is one of the first things they should have offered you.

Outta curiosity have you managed to get anywhere with your case? I’m suffering the same symptoms and honestly a very similar time frame , the last few weeks I’ve even started vommiting but A&E just said it’s an IBS flare up and sent me home , I feel so rough and I’m kinda lost

Hello everyone :) I went to the spire yesterday. The results for coeliacs comes back within 2 hours and that was negative . I had bloods taken for food allergies and intolerance that could be up to 5 working days.
yesterday I had a sausage roll, kiwi and strawberries. Ryvita with Philadelphia light.
and today I am in agony. From the bellybutton down I feel like my insides are on fire

You need the camera down and up again , I have had Crohn’s for 25 years - 11 surgeries and onto my second stoma my calprotectin has never once been elevated but I’ve never had any extended periods of remission either.

I wasted three years trying to get diagnosed - IBS , stomach ulcer , heartburn etc all used as explanation. I did have a stomach ulcer but when finally they went past the stomach ulcer they discovered I was destroyed internally from Crohn’s and I needed immediate serious surgeries - fight for proper investigations

Thankyou for this. I also agree I need cameras. That’s interesting to know about your calprotectin never being raised.
mom going my calprotectin will be back tomorrow ile be ringing to see if the results are in. Regardless of the results I’m going to ask for a referral to gastro. But I think the GP will refuse if the levels aren’t raised …

Then I'd be inclined to directly ask her how confident she is that you don't have bowel cancer considering you've been passing blood for 3 weeks and she hasn't even examined you.

I know it's hard, but you're being let down and you need to advocate for yourself.

I’ve just called the drs and my calprotectin has came back fine. I have a app on Thursday to see a different GP

Definitely write out a list of all the things you want to say, have a lot through this whole thread as you do. Be clear with your symtpoms and ask directly for the investigations you want. If they say no, then I'd be asking them why specifically they don't think x is helpful perhaps a colposcopy or whatever it is.

Then ask them about next steps - so treatment or medication to try in the meantime, and then investigations they want to do at the same time. Hopefully it goes well for you.

In genuinely in shock. I’m thinking “how can I be this poorly and bad with my stomach and have no inflammation at all”
there was also nothing about there being blood in the sample. Which there was.

I will definitely be writing a note on my phone again to take.I can’t be fobbed off. As some people have mentioned on here they had no inflammation and after a camera it was found they IBD.
thankyou everyone for all the information and advice x

I don’t have any advice but sounds utterly miserable so wanted to say I hope you get some answers and relief soon!

I know I sound like a drama queen but I wanted to cry when I heard the calprotecrin results . I was thinking how is that possible ? I’m in so much pain. They will just give me the old “it’s IBS” bull. I’m busy writing a note on my phone for my GP on Thursday

Yes I knew the feeling, it's not that I want something to be wrong but it already is, so I'd rather they find it easily. Be very clear about what you want, research websites like the NHS one, mayo clinic, etc as they have lots of detailed information of a variety if procedures you can have done and also medication to try.

I'd ask about antispasmodic medication to help with bowel cramping etc. Really emphasise that you think it's IBD and want a colonoscopy and sigmoidoscopy to ensure nothing can be missed. If they shut you down, say why don't you think x will be helpful? Or say you want their refusal to do x documented in the notes, despite their being indication it could be useful. I hope it gets you some progress in the right direction.