Hi having the  same problem but my fc calprotectin is 869 and i am v.worried any advice suspected IBD as well

Hi Anna

im in roughly the same area as you, I've been having bowel issues for around 3 years and had a sigmoidoscopy and ct colonoscopy in that time with normal results. Originally I had a calprotectin test which was within normal range at 48 but just after Christmas had a terrible bout of watery diarrhea that even loperamide didn't treat. Had another calprotectin test and the result has really shocked me at 860 so I've been referred for an urgent colonoscopy next week. I feel like I'm in turmoil and never been so scared. I'm 50 but I'm terrified of the results. 
 

David 

Good luck for tomorrow Anna, hope it goes ok and isn't too bad. Keep us updated. 
 

David 

Thank you will let you know

Hi all my son his 4 his results came back march 2020 with raised calprotectin over 600 refer urgently nothing done so kept chasing it had more stool samples in aug came bk just over 500 refer urgently iv had to chase and chase them finally we have appointments 1st Feb 2021 tomorrow with gastroenterologist hopefully  we r finally getting  somewhere 

Hope you get some reassurance today, if it's going ahead. 

Best wishes A 

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 sorry to hear about your son hope is gose all well for you and you be a le to find out somthing i had my endoscopy  done today which very funny showed nothing to be inflamed  but have been told that there is something wrong but not known where they took 14 biopsies and said they will send it to be tested i am under the care of surgeons  which worries me a bit but still have no idea what is happening which i find this fustrating but hope it went better for you and hope you found out whatbis happening to your son i also hope i will all work out for you

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 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.

Hello everyone. 
 

I am slightly worried my calprotectin levels are about 650 and I  am booked in for a colonoscopy, but i am only 19. I'm scared as the doctors think it's a form of IBD, and also I'm scared for the colonoscopy. 
please feel free to drop any advice. Thank you 

Hi

im going through the same thing , have you had your colonoscopy? Thank you 

Hello

no not yet i rang the hospital after i got my referral from the doctors and they said the waiting list is quite long and that they would contact me as to when i can get booked it. It's such a long wait not knowing. 

Still waiting for my colonoscopy date to come through. It will be 2 weeks on Wednesday since I saw my gastroenterologist, was kind of hoping that I would of had a date by now, especially considering that my gastro put this through as an urgent.

On the positive side, my mri date came through and that's on the 12th April. Though I'm not entirely sure what an mri is going to show in regards to crohns/IBD.

My calprotectin level of 5200 is just playing on my mind so much. The waiting is almost unbearable : ( 

What's your symptoms guys? 

Hi I have just had a stool sample and it has come back abnormal calprotectin I have to repeat stool sample in two weeks. I don't know what level the calprotectin is as I only got a text of doctor's to repeat test in 2 weeks so I am worried. I will be doing repeat test next Friday any advice would be appreciated.

Ness49

Hi Jackie like you my calprotectin level is 1800, I'm told that's the cutoff point so it can be higher, mines never been low I don't think but I only have it tested in a UC fllare.

I am starting cortiment Tomorrow have you ever taken it.

My first time on oral meds and a bit apprehensive. 

You ok now as I see this is way back in February 

Take care 

Your cal protectin levels are showing signs of inflammation. Up to 50 is normal, 50-200 is the mid range and over 250 is high mine was 1800 but people seem to go even higher than that.  After my post here back in February I ended up having an urgent sigmoidoscopy which showed awful inflammation of my colon. They couldn't go far as it was so had there was a rush of perforating my bowel. I tended up being admitted 5 days later for 13 days IV steroids didn't work and I have ended up on biologics - infliximab to avoid surgery. I seem to be responding to it and am still on steroids and reducing. I shall be off them in a couple of weeks.  
 

please don't worry about the colonoscopy. You may have had it by now.  Have had a problem getting onto the site to respond.  
 

im sure you will get some answers when you follow up with the consultant after your colonoscopy.  It's better if you can get a quick diagnosis and get the treatment you need if it does turn out to be IBD.  There is a crohns and colitis page on Facebook with lots of supportive people whether you get an IBD diagnosis or not so I would suggest joining if you can.

Wishing you all the best xx

Sorry I have only just been able to get back on this website. My post was the first time on here.  
 

I am sure you have now had your repeat test and got some answers from the hospital. Up to 50:is normal 50-200 mid an over 250 is high inflammation. I have read some get results in the thousands so please try not to worry. Be quicker by what the consultant says and hope you get to the cause of the issue. If it is suspected IBD (Crohn's disease, ulcerative colitis) please have a cook at the crohns and colitis group on Facebook. There's lots of support and advice there.

I wish you well.  

Hi sorry for late reply I had issues with the site as was my first time using it.  
 

I ended up in hospital on IV steroids after an urgent sigmoidoscopy showed severe inflammation in my colon, so bad they couldn't go far for fear of perforating my bowel.  I wasn't sedated so could see how bad it was myself.  They increased the prednisolone and also gave me a rectalfoam, budesonide, is that what your meds is? I haven't had a drug with that name but think it may be similar. I had  budesonide recital foam twice daily.  Unfortunately increasing steroids and the foam and within 5 days was admitted to hospital on IV steroids which also didn't work for me.  I ended up on infliximab infusions - a biologic. Very scary after years on what I considered a low risk drug for years then flaring and ending up unable to control it on a biologic.  However, despite my concern it has really helped my crohns. No longer on recital foam but reducing steroids slowly still I have had side effects which we don't know if they are caused by the infliximab or steroids as been on them since January so am being monitored and received  iv meds to prevent a reaction at my last infusion. I am beginning to think it is the steroids as symptoms still there but defo reducing as I reduce the steroids. 

please don't worry about taking medication as it is important to get any inflammation under control. Sometimes reading about the drugs can scare us silly. If you read the possible side effects of paracetamol it would scare you. All drugs carry a risk but you have to weigh up the pros and cons. Always discuss any concerns with your Ibd team.  
 

If you use Facebook there's a crohns and colitis site and support group you can join and ask questions. I have found it very helpful and informative so please have a look at that.

I do hope you have been getting on ok since you posted here and any drugs you are taking are getting on top of the inflammation  xx