IBD

[Shauna2866]

Hi just seeing if anyone has IBD or is under investigation? I’ve been having on and off trouble with my bowels since last year April
I was having episodes of lose bowels with blood and urgency to go toilet this was happening for months my doctor got me to do a stool sample he checked my calprotectin levels and they came back at 157 and then done another and then come back at 185 so why there not massively elevated he said it’s still not in the normal rage 0-50!

it stopped for around 8 months so doctor said ibs but you don’t get abnormal levels of calprotectin do you ? With ibs ?

Anyway this past week it’s now retuned
I don’t have loose bowels just every morning I get bad stomach ache right at the bottom and then when I go toilet I have mucus it’s like browny orangey mucus 🤮 sorry TMI!!

so I’m not going to call my GP on Monday and see if I can be sent for a colonoscopy as something clearly is wrong as it wouldn’t keep returning

just so down and worried as it’s the not known of what it is im with a new gp now so hopefully they will get to the bottom of it.

Don’t know why I put I’m not going to call the doctors 🤦🏻‍♀️ I meant I am calling the Monday morning .

I had similar issues this year - at its worst my calprotectin was over 2000 then dropped to 400. Had a colonoscopy on 2 week wait (I guess because I'm old) Nothing sinister on colonoscopy - a bit of inflammation that GP thinks is probably IBD

I'm waiting for an 'urgent' referral to GI team but they tell me the wait is around 12-14 months

@spiggydit that’s good it’s nothing to bad for you even though I have read ibd can be really bad for some people xx

im going to call doctor Monday and asked to be referred to get to the bottom of it as it’s so depressing my stomach hurts so much just want answers now

really that’s along wait isn’t it least you have had your colonoscopy x

I have IBD. It does come and go. Your symptoms sound very classic. If there is blood it is not IBS. Blood only comes from ulceration and ulceration comes with IBD.

However, I have found that removing all ultra-processed food from my diet and reducing carbs as much as I can be bothered, really really helps. So, no cheap bread, crumpets, bagels etc. Fast food really messes me up. Crisps seem to be a big culprit for me.
These are the ones to avoid:

• carbymethycellulose (also known as cellulose gum)
• polysorbate 80
• mono and diglycerides
• Xanthan gum
• Carrageenan
• maltodextrin
• high fructose corn syrup
• artificial sweeteners

Totally avoid nuts and seeds during a flare up - even seeded jam or a snickers bar would be bad during a flare up.

Eat lots of organic live yoghurt, bananas, avocado, porridge - things that are easy to digest. Once you flare up subsides you can eat normally bar the additives, nuts and seeds.

Also - avoid stress at all costs!

This is working for me at the moment.

Hope you feel better soon

Just had my recent calprotectin test back and my levels are now 655! Never been this high before so worried of what this could be been referred for colonoscopy x

How are you getting on @Shauna2866 ? I have recently had very similar problems to you and went to my GP, had high calprotectin levels. Calprotectin test is basically measuring the white cells in your gut, they're there due to inflammation. I have been urgently referred for a CT scan. My GP thinks I may have developed UC or Crohn's (I already have one autoimmune disease).

It's no fun at all is it. I have been based near the loo for the past month and have lost 7 kg so far.

@spiggydit I'm waiting for an 'urgent' referral to GI team but they tell me the wait is around 12-14 months

Yikes. Are you left with symptoms until you see them? I don't think I could endure constant diarrhoea for that long. Can your GP prescribe something? I've been told to avoid Imodium.

@CrunchyCarrot My GP is trying to manage me pending the GI appt. It's settled down for a bit after some meds the GP gave me (after talking to GI team on the phone) so keeping fingers crossed

I hope it stays that way for you! I hope my symptoms can come under control soon too.

My calprotectin is 275 but fit test was fine at 4ug or something and blood tests were also fine. I don’t get bleeding unless I get a pile which I have had after two of my pregnancy’s. I dont really get diarrhoea unless I eat spicy food . Only time I’m constipated is when I’m on iron tablets or eat bread ( been tested for celiac but was clear)
I sometimes get a niggling dull pain on right side of abdomen which can be tender when I pee.
from reading about IBD my symptoms don’t seem to match.
I have no clue what it could be and am due to repeat calprotectin test tomorrow to see if it’s still elevated.
I do get some aches on joints but then arthritis runs in my family
anyone else had barely any symptoms of IBD but actually had it?

Reduce/eliminate sugar and taking vitamin d helped me. Energy levels have stabled as well.

@Jadejack did you get any answers to this?

Reading your post, it certainly doesn't sound like IBD. I have IBD and it's horrific. During a flare up I have to use the toilet 10+ times a day, all loose watery stalls. I get severe cramps almost every single morning until I go toilet. I get cramps and odd sensations in my lower guts, lost weight especially during a flare up.

I had a second calprotectin done which showed the inflammation had gone down from 275 to 211 but as it was still somewhat high they sent me for an MRI of small intestine which ruled out IBD so it’s been put down to IBS. I definitely had a feeling it wasent IBD

You sound like me! I had wildly different calprotectin results 300+, 2500 and then 7 all within the space of 3 months.
Had colonoscopy and small bowel mri and no ibd found.
Now my only symptom is reflux and I’m doing everything to try and mitigate it (but can’t tolerate ppi). And had 2 endoscopies.

I never had a colonoscopy only an MRI.
yes I also suffer reflux as well, I think I had a Transnasal endoscopy a few years back but nothing recently.
im now on Esomeprazole and peptac liquid for the reflux which I can’t stand.

How is everyone now? I’ve had about 6m of on and off loose stools, finally saw the doctor in December because I had some sort of diarrhoea bug where I had a day of bloody stools… then it’s taken a while for my stomach to get back to normal. We did a calprotectin sample and it’s come back high at 170 so I need a repeat in a month. I’m just a bit worried it could be serious. I know of a few people around me with bowel cancer and it’s just making me spiral a bit!

@Mrsworried1 try not worry to much mine was 170 with bloody lose bowels
and then it went to 183 and i got diagnosed with colitis im currently in another flare now x

Did your symtoms come out of the blue? I tend to catastrophise about this kind of thing! I feel like it will be ages before I’m reassured as I have to wait a month for a retest then potentially a long wait for hospital appointments/tests. X

What medication are you on for your colitis, my DH is on Saloflak granules and it does seem to help him manage his symptoms along with diet.

@Mrsworried1 yes it all happened after i had my second c section it was so odd my bowels have always been absolutely fine and then one day i was having constipation lose bowels loads of blood urgency it was awful and then i kept having calpro tests done and they kept coming back abnormal so i got sent for colonoscopy and they said i had colits they could see it i was absolutely petrified thinking i had the big C!! but you will be absolutely fine it will be more than lightly colits try not worry to much
have they tested for infection?
@Lennonjingles i’m currently on them they was working well for me but i’m back in a huge flare so i’m not waiting for the IBD nurse to contact me to see if i can have the suppository’s xx

Now *

I am in a similar situation. I had a clear colonoscopy in late 2024 and an ultrasound in the middle of 2025. No cancer or IBD. I took Symprove for a while and everything went back to normal - until it didn't.

But I have urgency, regular toilet visits and have bleeding because my bottom is so sore. I am now officially past the menopause as my last period was last January, so assume it's something to do with that as they didn't find anything else. It is so frustrating - I've googled and googled and I just can't find anything that fits my symptoms. I don't feel ill, I am not tired, I haven't lost my appetite, I haven't lost weight - but I need the loo ridiculously often - some days are ok, others are awful.

Thanks for your reply! Yes they tested for infection at the time of the bloody diarreah I thought it might have been from something I ate…I was up goingthe toilet every hour one night and it was awful. Then the last few episodes were all just mucus and blood! and anyway the sample culture was normal!

The doctor said he was not worried and it could still have been caused by a viral infection rather than a bacterial one.

Anyway it took weeks until my stomach stopped bubbling and I felt like I wasn’t going to poo myself at any moment! It’s still not 100% I can’t seem to eat “normal” having to be careful with fibre or I’ll not be off the loo.

because it’s still delicate the doctor agreed to a calpro test and that’s how I’ve ended up here! I hope it’s back to normal in a few weeks and it’s just been a bug.

If I hadn’t have been bleeding I wouldn’t have been no where near as worried. But it’s set off alarm bells for me Combined with the higher calprotectin level.

how old are you if you don’t mind me asking?

the doctor tried to put my mind at rest saying could be IBD as I have another autoimmune disease however I thought I’d have worse/more symptoms x

@Mrsworried1 aww bless yes that what i had and i have now loads of bloody mucus and blood and back and too to the toilet it’s awful specially when you’re out !!

if it’s going to be anything it will be IBD colits / chrons not the best thing to have but can be managed well with medication
xx

I’d fancied trying that symprove too but didn’t want to make matters worse!

Did you do a calprotectin test? Because my GP said if that was normal, they tend to believe you have IBS.

My friend has IBS and suffers really badly. One “wrong” food and she’s on the toilet all night. She has to take stuff like buscopan before going out for food etc.

My calprotectin was raised, so there was/is obviously some inflammation. It could be microscopic colitis. Or it could be my hormones combined with stress. Or all of it! It's been much better today - yesterday was horrible.