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.

Glad to hear you know what’s going on now op. That’s where my crohns is too. I dragged on for years just telling myself I had IBS until I had a real flare up with lots of pain and loo trips that didn’t settle. Led to a scope and crohns diagnosis.

Touch wood I’ve only needed 3 lots of steroids over the past 6 years, and no need for maintenance medication. I do however have regular B12 injections, as that was low, and my consultant said it was pointless taking it in a tablet form, as where my crohns is is where it’s best absorbed, so something worth asking about when you see the gastroenterologist.

Ive more recently developed crohns arthritis, but I’m managing that (and I think it’s helped my guts a little) on a very low carb/keto style diet. You’ll find everyone wants to give you “helpful” advice, or sell you some MLM “miracle cure”, it can drive you a bit nuts. I think the thing to realise is that everyone is different, and different foods/diets/meds work for some and not others, so you do you.

I found the book “Inflammatory Bowel Disease: The essential guide to controlling Crohn's Disease, Colitis and Other IBDs“ by Professor John Hunter (gastro at Cambridge) very helpful at the beginning, and also the crohns and colitis UK forum on fb a great place for info and advice.

Good luck, and remember that if the first meds they put you on aren’t helping after a few weeks there are lots of alternatives. Ask if there is a specialist nurse, as it’s so much easier to get hold of one of them and get a plan of action when things flare than it is to get hold of the consultant generally.

Sorry, that was a bit longer than I meant it to be

Glad to hear you have a diagnosis now, chrons is a tricky illness to have as everyone has such a different experience, getting the right medication is key and as said before the first one you try might not be the best. I inject myself weekly, it was biweekly but I needed a bit more, sounds horrible but it has made a difference, let us know how you get on with the doctor

Thank you both!

I’m a bit worried how I will know I’m having any sort of flare up if I’m not having physical symptoms, so that will be the main thing I need to discuss. I don’t know whether I will be offered regular calprotectin tests to check on things?