Calprotectin >2000 (second time in 3 years). No diagnosis yet

[Sammy2021]

Hi. I have had IBS symptoms for 14 years, but 3 years ago, after multiple GP visits due to dirrahea and occasional blood in stool, I was offered a calprotectin test. The result of this was >250, so I was referred to gastroenterology. I then did the test again and the result was >2000. I was referred for a colonoscopy, but they could only do a sigmoid (they couldn't sedate and because I was in a lot of pain, the doctor decided to stop - which annoyed me actually because he didn't ask if that's what I wanted). The bit of bowel he did look at (the very lower part) was clear, so was a biopsy. I then did a PillCam test which looked at the small bowel, and that was fine too. The calprotectin test was repeated and it had gone down again to 59 - pretty much a normal level. Despite the fact they didn't look at the whole large bowel, due to the calprotectin levell lowering, I was discharged and told that I probably had an infection which caused the high figure and symptoms.

I felt bit better for a while but continued to have IBS symptoms, but didn't notice any blood. I had occasional diarrhea but only after large meals, and only usually went to the bathroom once per day.

Over the recent months I have noticed tenderness in my upper right and lower left abdomen when pressed. The lower right also squelches if I press it. Last week, 3 years after the initial tests, I noticed some blood in my stool again (and some mid-cycle bleeding for the first time ever). I had a GP appointment and did another calprotectin test and blood tests. Blood tests came back normal, but the calprotectin is back up to >2000.

Now I'm really concerned about how long it's been this high. I'm very concerned that by not looking at my whole bowel 3 years ago, they missed something. To be honest, I'm hoping for IBD becaue I'm terrified that it's cancer and they missed it years ago, meaning it's now advanced. I'm only 32, so it's rare, but it does happen. No family history but I have drank alcohol every day for over 10 years due to anxiety, so I must have increased my risk massively (I have read that apparently alcoholics don't tend to have higher calprotectin levels that non-alcoholics, so that wouldn't explain the elevated levels). However, the main symptom of IBD is diarrhea, which I don't get then often.

I'm just wondering if anyone has experienced anything similar with raised calprotectin levels for so long, yet not much diarrhea? Any tenderness? I guess I'm just looking for a little reassurance, but equally if you were diagnoses with something sinister, it would be good to know too.

Thank you.

[rg1987]

Hi, I was diagnosed with ulcerative colitis when I was around 15, I had a colonoscopy and was put on a short course of steroids and I was taking immuran and salofalk for years, along with a cleaner diet. I stopped taking these around the age 22-23 and had been symptom free since then. I'm now 33,and last December my symptoms came back, at first cramping, bloating, occasional diaria, but stool was mostly normal. GP did a blood and stool test, blood was normal, stool showed abnormal calprotectin (>4000). I was reffered to gastroenterology, but due to the current covid situation I had to wait a month, I guess my symptoms weren't bad enough to warrant an urgent referral, or have a shit GP. Anyhow, I kept calling the gp and finally I was put on Octasa, which unfortunately made my symptoms much worse (constant diaria especially night time, more cramps and the blood in the stool), even though I stopped taking them after a week, I ended up in an emergency room and I'm in hospital for a few days now. I also had a camera test and biopsy, getting steriodos now which seems to have lessened my symptoms. Forgot to mention that in this 2 month period I also lost 6-7kilos, which is a lot considering that as I was 72 to begin with.

While I don't want to give you the scare, I would advise you to get it checked out again, as if you do have ulcerative colitis it could get much worse. As you said another reason would be to get checked out is to rule out colon cancer, which is unlikely due to your age, but you never know for sure until you know.

Hope you will get better soon.

PS. Also try a IBD diet and some probiotics, they did help me lessen the cramps and diaria. Avoid stress as fire, as it can quickly worsen an active flared up UC.

[Sammy2021 in reply to rg1987]

Hi, thank you for your reply. I'm sorry to hear about your situation - that sounds awful. I hope you are doing better today. You haven't scared me - it's reassuring to hear that you have IBD and very high calprotectin with not too much diarrhea. IBD sounds scary and horrible, but I'm praying that they diagnose me with it. I have pretty much convinced myself that I have bowel cancer, and that, as the first raised calprotectin result was 3.5 years ago, it is now advanced. As well as the lower abdominal symptoms, I have have also been suffering with heartburn and nausea, and lower back ache and pains down my legs. I have put all of this together and convinced myself that I'm going to die. I'm absolutely terrified. Sorry for the rant. My point was just that it's reassuring to hear that IBD can cause these symptoms. Again, hope you're doing better.

[Pipinha in reply to rg1987]

The blood tests its inflamation?

[Linzdjh08]

hi i am 33 and still have no answers mine has been going on 9 years! mucus and blood in stool,gas,odd pain,mouth ulcers,no runs either! they told me ibs! my first ever app i had a liver marker flag up

my second app 5 yr later (last year) i had a 2000 calprotectin got sent for ct scan a colonoscopy and endoscopy found nothing few piles thats it was discharged!

my app last week after i phoned to say blood worse my calpro was 893!

they put me on mebevrin for ibs and that is not working! i am back in april for another stool test so we will see! ive not had an mri or pill cam yet ..my small bowel has not been checked! i dont believe its ibs my cousin has ibd aswell its so frustrating! Keep pushing and keep us updated ❤

[Sammy2021 in reply to Linzdjh08]

Hi. Thank you so much for replying to me. I'm sorry to hear that you have been going through this. Although it must be frustrating not not know the cause, it's great that your ct and colonoscopy came back clear. I am so scared that mine is cancer that I'm basically not functioning at the moment. I have an exam tomorrow and I have cancelled it because I can't pull myself together. It's reassuring to hear that your results came back clear though. I hope you get some answers soon.

[Pipinha in reply to Linzdjh08]

You made blood tests and confirm inflamation?

[Smilerdownes]

Go back to your doctor and insist on a colonoscopy don’t take no for an answer. A sigmoidoscopy cannot diagnose IBD. Many years ago when we my daughter was 18 she suffered similar symptoms and was given a sygmoidoscopy that was clear. They convinced her she had IBS and she struggled on for a further 7 years. It was only when she went to work in China as a teacher and she was poorly that they did a colonoscopy and diagnosed Crohn’s disease straight away. I was so angry that she had been to the doctors so many times and had been fobbed off. Thankfully she is well now and on proper medication which controls her well most of the time. Incidentally doYou ever suffer from mouth ulcers at all?

[Sammy2021 in reply to Smilerdownes]

Hi, thank you for your reply. Sorry to hear that your daughter struggled with symptoms and to get a diagnosis - glad to hear she is doing better. I get the odd small ulcer on my tongue from time to time, but that only happens about twice per year, max. I'm really hoping it is UC though - sorry if that sounds insensitive given that your daughter has it - I'm just terrified that it's cancer. Hope she continues to do well with her symptoms.

[MissEgo]

Read the posts here. You are not alone. There are posts that may help you and give you tips. How theyhave relieve their sysmptoms atleast. It’s all about living, there are always answers and dont stop having umyour day enjoyable. Even , enjoy looking for answrs because the answers will also help you get a better health morr thsn before

[Sammy2021 in reply to MissEgo]

Thank you for your reply. It is helpful to read other people's posts on the subject, because to be honest, I'm a complete mess at the moment worrying that it's cancer. Haven't slept properly in days, can't stop crying, keep imagining them telling me. It's horrendous. Hopefully I'll hear back about an appointment soon and have some answers.