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 

Hi Jem that's a really high calprotectin level, did you find out what was causing it.

I hope you are having it checked out.

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

Hi Jackie thank you for replying I am just waiting on my repeat stool sample to see what it comes back at  my last one was in the mid to what u have shown me. Hoping it will be ok and just a bad flare up of my IBS. Been trying gluton free foods and it seems to be improving not so much pain and the diarrhoea seems to have settled seem more constapated at the minute joys of living with IBS. Hope you are ok after ur stay in hospital it sounds like ur having a bad time at the moment. I'll let u know what my what my next results say when I get them.

Take care and wish you well 

Hello. I've just been scanning through this whole conversation. I was diagnosed with UC in 2009. Been happily in remission for most of that. Then I started getting constipated whilst pregnant with my daughter. She is now 3.5 yes old. Been getting all sorts of changeable BM , have been using laxitives and all sorts. Then Sept last year I started getting really really foul smelling flatulance and symptoms worsened. Had FC come back at >700 in Nov, >900 in January 2021 and just last week they came back as >7000.

I'm in so much pain and discomfort but they don't seem too concerned because I've a history of UC but those levels scream CRC to me.

Does anyone have any further information or have a CRC diagnosis after FC levels that high?

Please help, I'm freaking out.

TIA Sam

Hi just wanted to ask how are you doing now?

Hi,I've had IBS si ce 2003 and earlier this year was getting server pain in my right hand side of my stomach had gastroscooy and found a icm lesion on my intestine that was causing blockage, spent 3 days in hospital and my calprotectin levels are at 787 in May 745 in September, have been diagnosed with crohens, not what I was expecting but not as bad as I was expecting, when I looked up symptoms of crohens it all made sense. Worring about something it might possible not be just adds to the pain etc as stress just feds it, I have stomach and liver cancer in my family history, so yes it did cross my mind, but I also thought I've done the right thing by going to the doctors, if caught early that's a plus and having watched my dad fight it for 9 years and seeing his strength I took on the mind set of I will be okay no matter what it is, my point being is all the right tests are being done and you've put yourself into the right hands of a doctor, it will get sorted one way or another, be positive within your thoughts, but also share your fears with loved ones don't deal with it on your own, sharu g it will eliminate some of that stress and ease some of that pain, yes I only have crohens and have to inject myself 2 weekly but after 6 months I am starting to feel like me again and not allowing it to control my life, I hope you get good results and if not what you expected you will get through it, you are a stronger person than you know and it will definatley make you see life differently whether good or bad outcome, our time here is too previous to be wasted on worring about something we can not change, hope ur outcome is positive, sending you love and positive vibes 

Whats ur calprotectin its diagnostic pretty much so if you say what urs is il beable to say regards

Mine is 12,070 and I have same symptoms as op

Mine is 12,070 and I have same symptoms as op