High fecal calprotectin levels- a bit scared now.

[BottomStress]

I have named changed for this due to embarrassment. Just to try and avoid any “interesting first post OP” posts

I’ve had mild ‘tummy troubles’ for years now. Nothing awful, but more episodes of having a dodgy tummy than most people seem to get. I gave up dairy about 5 years ago which seemed to improve things and other than always suffering from a bad upset stomach when I’m very stressed (sorry!) I’ve felt fine. I had haemorrhoids while I was at university and the doctor told me at the time that she thought I probably had IBS.

I dropped a stool sample off to the doctors last week after a couple of months of intermittent bleeding after going to be toilet. Other than one occasion where there was a little more it was only a very small amount and seemed to be fresh blood so I assumed it was haemorrhoids but the doctor advised doing samples just in case.

I got the results back today, the test for blood was positive but low (I don’t know how low) but the test for calprotectin was positive and high. I don’t know how high but somewhere over a thousand/in the thousands. The doctor has referred me to a specialist and I should have an appointment in the next 4-6 weeks. I can’t help but worry though, especially as the level was so high. The doctor seemed to think it was either Crohns or UC and not anything more sinister than that. I am in my late 20s and I don’t smoke or eat red meat so that’s three low risk factors for bowel cancer.

Other than occasional stomach cramps I feel fine in myself, I honestly thought the results would come back as negative and that I had haemorrhoids. Has anyone had similar high results and had a diagnosis of some form of IBD and not anything more sinister? I’d obviously rather not have either but IBD is definitely the lesser of two evils!

Thank you for getting this far, if you have. I know that nobody can diagnose me but I’m just looking for a bit of reassurance.

[BottomStress]

Hopeful bump!

[Hatemyhusband]

No advice, but I’m in a similar predicament at the moment as I gave two samples in 24 hours apart and one is normal and the other is massively high! I’m now doing a 3rd which will either be ok or lead me down the colonoscopy route. My bloods were all normal.
It’s very scary isn’t it x

[BottomStress]

Thank you for the reply!

Yes it is quite scary. I’ve worried myself by googling (which I imagine is not unusual) but I’m just trying to tell myself that it’s far more likely to be IBD than anything else. I think I’d almost be less worried if I was feeling ill!

The doctor didn’t say whether referring me to a specialist meant a colonoscopy but I’m assuming that it probably does.

Hope everything goes OK with your third sample x

[Hueandcry]

I've no experience as haven't got to the testing stage yet but just wondering if you suffer from nausea? I've been putting off calling my gp for a while but my symptoms are similar to yours apart from constant nausea. I'm going to call the doctor today

[BottomStress]

@Hueandcry No, I haven’t been feeling sick. Sorry I can’t be more helpful!

If you’ve been having bleeding for a while I’d definitely contact your doctor though. Mine wasn’t even going to do any tests until I pointed out to her that this had been happening every couple of weeks for a couple of months. It’s a good job she did agree to them!

I hope you’re able to speak to your doctor today, good luck!

[Hueandcry]

@BottomStress thank you. I've called & as it's considered 'non-urgent' I have a telephone consultation booked for next Wednesday. 🤞 for you

[ColonelPine]

Not me but someone in my family has symptoms that sound very similar to yours (not sure on exact calprotectin levels though so can’t compare). Had a colonoscopy and that didn’t find any inflammation. Next step is to have scan of higher up in the digestive tract and they are waiting for that appointment. But cancer was ruled out very early on by the consultant so I hope that is reassuring to you.

[BottomStress]

@Hueandcry 🤞🏻 For you too!

@ColonelPine thank you, that’s reassuring. I’ve got it in to my head that it’s more ‘normal’ to not feel ill/have many symptoms with bowel cancer than it is with IBD which is the main reason I’m worried. I just don’t understand how the levels can be so high when I don’t feel ill.

Think I need to step away from Dr Google...

[ColonelPine]

I’m not a doctor but I don’t think it sounds like you need to worry just yet. Definitely step away from Google in the meantime. Good luck! I’d be interested in hearing how you get on actually; please update us, if you like.

[Balto]

Over the past ten years I would get these flares where going to the toilet was really quite painful with cramping, finally went to the doctors a couple years ago, and had a high calprotectin count and blood in stool. Late twenties and sent for a colonoscopy and gastroscopy, results were UC and coeliac disease.

[BottomStress]

@ColonelPine

I’m not a doctor but I don’t think it sounds like you need to worry just yet. Definitely step away from Google in the meantime. Good luck! I’d be interested in hearing how you get on actually; please update us, if you like.

Yes I will do, thank you!

[BottomStress]

@Balto that’s interesting, thank you. My mum is adamant that I’ve had a dodgy tummy since birth I don’t think it’s that bad, but I do get an upset stomach when I’m stressed. It’s more times of brief, extreme stress though, if that makes sense. Like I was very unwell the day I took my driving test and when I handed my notice in for a job I’d not been at for very long!

Do you remember how high your calprotectin levels were?

[ColonelPine]

Again, @BottomStress my family member’s mum says the same about their tummy having been not quite right since birth. And flare ups often seem related to stress. Sadly it’s a bit of a vicious circle isn’t it because having tummy troubles can cause stress in itself! Anyway, I hope things improve for you soon. Thanks for agreeing to keep us posted - I will do the same.

[Balto]

[quote BottomStress]@Balto that’s interesting, thank you. My mum is adamant that I’ve had a dodgy tummy since birth I don’t think it’s that bad, but I do get an upset stomach when I’m stressed. It’s more times of brief, extreme stress though, if that makes sense. Like I was very unwell the day I took my driving test and when I handed my notice in for a job I’d not been at for very long!

Do you remember how high your calprotectin levels were?[/quote]
Yes in a letter my Doctor wrote, faecal calprotectin has come back as very high, it was around the 1800 figure (I don’t know why but it feels odd giving the exact figure )

[Balto]

Day to day I don’t have tummy troubles and after my diagnosis I haven’t had any pain going to the toilet since I started taking Mesalazine tablets. My flare ups before felt random, maybe once a year and lasted a few days, during this time I would have both urgent toilet trips and constipation. But outside of a yearly flare up, I never had a poorly tummy after eating anything in particular (even gluten despite being coeliac).

I do feel extremely tired most days, but I do also have low vit D and borderline thyroid issues that I’m trying to sort out with my Doctor currently.

[BottomStress]

@Balto No I completely understand; thank you very much. It’s quite reassuring to hear yours were (presumably) around the same level as mine

[HGC2]

I have chrons disease and am in a flare meaning my calprotectin levels are off the scale, I'm still working, doing fitness classes and running but know my "habits" are not normal. Good you have been referred, next steps will probably be a colonoscopy and then you will know exactly what you are dealing with. If it is chrons or UC there are some great drugs available!

[Flibbertygibbertywoo]

Endometriosis of the bowel can cause this and can masquerade as UC or IBS. If it’s cyclical it’s worth considering.

[Balto]

@Flibbertygibbertywoo

Endometriosis of the bowel can cause this and can masquerade as UC or IBS. If it’s cyclical it’s worth considering.

Interesting, I’m getting a laparoscopy soon, I do wonder if they’ll find something that will link with the UC diagnosis

[Flibbertygibbertywoo]

It was certainly true for me Balto. I went in for surgery to remove my tubes and came out with a diagnosis of severe endo that had infiltrated my bowels and upper GI tract and had my womb stuck to my bowel.

[BottomStress]

@HGC2

I have chrons disease and am in a flare meaning my calprotectin levels are off the scale, I'm still working, doing fitness classes and running but know my "habits" are not normal. Good you have been referred, next steps will probably be a colonoscopy and then you will know exactly what you are dealing with. If it is chrons or UC there are some great drugs available!

Thank you for this, it’s good to know!

Yes I imagine it will be a colonoscopy next. I have a telephone appointment with the doctor on Monday to ask all of the things I should have asked yesterday. I had covid in January so I’m wondering if that could have partly caused the inflammation.

[BottomStress]

@Flibbertygibbertywoo

Endometriosis of the bowel can cause this and can masquerade as UC or IBS. If it’s cyclical it’s worth considering.

Oh that’s interesting. I wouldn’t say it’s cyclical, no, and I have very regular ‘normal’ periods.

I also had an ultrasound of my uterus and ovaries last year and everything was normal, so I guess it’s unlikely to be that?

I had various blood tests done too, FBC was fine and no anaemia or vitamin B12 deficiency which is excellent as I’m about 95% vegan!

[Flibbertygibbertywoo]

I’d had an ultrasound (internal and external) where I was declared free of endometriosis too. They only find it with a laparoscopic examination.

That said if it’s not cyclical with your period I’m sure it’s something else :) good luck!

[BottomStress]

@Flibbertygibbertywoo

I’d had an ultrasound (internal and external) where I was declared free of endometriosis too. They only find it with a laparoscopic examination.

That said if it’s not cyclical with your period I’m sure it’s something else :) good luck!

Thank you very much!

[BottomStress]

Hello, I’m just updating this thread in the hope that it will be useful/interesting to anyone potentially reading it now or in the future and because I said I would!

I had a colonoscopy yesterday, and the doctor seemed very certain that I’ve got ileocaecal Crohn’s. I should have a an appointment date with a gastroenterologist within the week as the doctor seemed to think it was severe enough to warrant being seen quickly. I’m still a bit shocked by it as I really wasn’t expecting it. I had a face to face appointment with a doctor about 6 weeks ago and even he said that he didn’t think it was an IBD as I was so well in myself and had such mild symptoms! In some ways I suppose it’s better to have next to no symptoms as I know some people do suffer awfully with IBDs but on the other hand it’s worrying that it was able to get quite bad without me realising.

I do also have haemorrhoids (I don’t remember much of the colonoscopy but I remember asking the doctor to look for haemorrhoids as I was fairly certain that was where the blood was coming from ) so I was right about one thing!

Thank you for the advice everyone!