Hi everyone. Just wanted to drop in quickly - I had a faecal calprotectin value of over 3000 when I was diagnosed with Crohn's disease in 2017. It was an urgent referral to gastroenterology as it was the highest my GP had ever seen and she was worried it might be cancer, but it turned out to be Crohn's. I was diagnosed after a colonoscopy with internal biopsies - it was mostly all upper colon. Three years later after steroids and then azathioprine & biologics, my Crohn's is comfortably in remission. Please try not to panic too much (easier said than done, I know)!

Hi LunaKC 

I genuinely appreciate you taking the time out of your day to tell us about your experience with raised Calprotectin. I'm still panicking over an urgent referral on Saturday for a colonoscopy. I've struggled with bowel issues for around 3 years and my GP and gastro consultant had both insisted it was IBS but I've never been totally convinced. A sigmoidoscopy and ct colonoscopy both showed nothing and my first calprotectin test weighed in at 48. Utterly frustrating having terrible bowel issues and nothing of note showing ...... that was until a couple of weeks ago after a bout of uncontrollable watery diarrhea that even medication didn't stop. The calprotectin was then raised to 860 which was an almighty shock and terror set in !!!! Even though my gp thinks it's IBD I can only think negatively so to read a post like that from yourself certainly helps and gives a bit of hope !!! Thank you once again. 
 

David 

Hi David  hope your well as promised here i am letting you know what happen today sorry for not letting you know earlier i was so tierd due to the sedation but the endoscopy have not shown anything inflamed which is wierd because the calprotectin is high they thought that is strange but they said that something is wrong but not known where the problem is they took 14 biopsies and now i am waiting for the results haven't found out much still in the same place they still have not ruled out cancer which worries me the most but hopefully  they will call back i  2 week time with the results 

Hi Anna,

Really pleased that it's not shown anything obvious also good to know you got through the endoscopy too !!! Fingers crossed that the biopsies taken don't show anything sinister too. Have a well deserved rest now after your ordeal today. 
 

Best Wishes 

David 

Hi David, I hope you have now had your referral and got some answers.
 

My faecal calprotectin level is 1800.  I have had Crohn's disease for 20 years. (I am now 57) I had been in remission with meds (Pentasa) for quite a few years but despite increasing these recently am now in full flare and back on prednisolone. The steroids aren't fully controlling my symptoms and having to shield because of COVID-19 as classed as high on the vulnerable list due to the meds. Hoping for the vaccine soon and that I can get off the steroids.

If you or anyone else has any questions relating to IBD please feel to ask me.

Hi, 

hope things are better! 

I am having the same problem. Although I have been told my calprotectin levels are 150 (a lot lower than majority on here). However I also have Fibromylagia & Diabetes. All of this is just making it so difficult for me to cope. What are you doing to help lower the calprotectin levels? Has anything helped? 

Hi everyone,

It's been a comfort to read your stories on this thread. I have been borderline with IBS/IBD for ten years now - with several examinations always just missing the needed evidence. After a brief period of remission, I have symptoms again. This time in keeping with a polyp. I had one removed three years ago, I was 37. I found out last week that my Calpro is at 1541 (!!) highest I've ever known it. And my occult blood was....... 400ug. This, I am very worried about - but I'm NOT anaemic. Get that, weird. Have been working as a Keyworker but managing. Waiting on my Colonoscopy now.

Wishing you all the best care and powerful healing possible. 

Peace, Tx

I was really ill starting Xmas morning with nausea, stomach cramps and diarrhoea. This went on for 5 days, I was then fine for a week and the same again!!

The doctor did blood tests and my inflammation markers were slightly raised to 17, my platelets were slightly elevated and I did a stool test which has showed high inflammation. (I am not sure how high I didn't think to ask as I was panicking so much).
I have had the worst anxiety and been taking Sertraline for just over 3 weeks, I am starting to feel like myself now.
I have been having 1 loose stool every morning without pain or cramping and then fine for the rest of the day but I’m not sure if it’s my anxiety.
The doctor wants me to have a colonoscopy which I really do not want, I have been referred to the gastroenterologist but my appointment isn’t until July!!
I was signed off work for 4 weeks and they are arranging some CBT for health anxiety.
I am taking a fermented turmeric supplement to hopefully bring down the inflammation myself and ask for a repeat test to avoid the camera.

I have had no cramps now for over 5 weeks, no blood etc but because my stools are quite loose I keep worrying about the change in bowel habits and obviously the high stool result. The stool sample was taken when I was having an ill episode and couldn't stop going to the toilet.

I feel well in myself and have started eating properly again now, I am really scared of having a colonoscopy but I am also worried that I might have bowel cancer. 
I am 32 so the dr said it's highly unlikely but I have read a lot online about young bowel cancer diagnosis it's really hard not to google.

Have the Colonoscopy - it's not as bad as you think. They need to see what's going on and then you'll get a definite confirmation of what's causing the problem. The Prep part isn't great - but hey, we're all used to that. Seriously, if I had been offered one sooner - I would've taken it. Good luck.