See this now worries me even more. Your calprotectin was 600 and lots seem to be in hundreds that are worried...

I had a result today that my doctor said was >6000 (wish I would upload a pic for someone to decipher as I asked the doc to forward on the notes / numbers etc) 

I've been referred for an urgent appointment with gastro within 2 weeks.

I am in so much pain at the minute it hurts walking around and when I eat. I had a major change change in bowel habits with a lot of mucus, and sometimes passing just bloody mucus ans no stool. 

I am also exhausted! 

I know there's a chance this is one of the bowel diseases but more worried this could be bowel cancer, all my bloods seem to come back normal but with my calprotectin being so ridiculously high and the amount of pain I'm in, I'm definitely worried! 

Hi, 

Over the last 9 months I've been having some weird symptoms. I get awful stomach cramps and then feel like I'm going to pass out.. I get all hot and clammy. One I realise my bowls I feel fine again. I've had this happen twice to me ans the second time was worse. I went to my gp about this as I was abit concerned and bowel cancer is hereditary. The doctor sent me to do two samples one was for any infection the other was for calprotectin. all the infection results came back negative which is a good sign but my calprotectin came back in the 4000 my gp said don't be to concerned as usually the results for bowel cancer or something more serious is in the 200/300. She referred to a consultant to find out if it was chrons or colitis . He sent me for another stool sample of the calprotectin and a celiac blood test with a test of my iron. My iron was very low but my celiac results were normal. My calprotectin has also returned back to normal. My consultant isn't willing to get me booked in for a colonoscopy as my results are normal. He told me I have to do regular 3 month stools and when it goes high that's when he'll get me in for an urgent colonoscopy. It only happens when I eat certain foods also. I'm not sure what else I can do other than ask for a second opinion but again I've not had another flair uo and usually it's every 3 months. I haven't had one sice my last. I want to point out my mum has the same symptoms and most recently has passed out and knocked herself out, my aunt has the symptoms, my cousin has symptoms or at least 1 flair up a day and she passes out ( we are both under same consultant ans he's referred her to have an mri on her overies), my sister and niece both get very mild symptoms and also my mums mother has these symptoms too but she's unable to tell us what is happening ans how it feels as she has dementia and Alzheimer's. I really don't know what else to do as the consultant won't do anything else for me until I present with high results. 

Hi all, 

so sorry that you are all in this limbo stage, it's so stressful when you're not able to find an answer.

I have just been told I have high (not sure the amount) Calprotectin levels and need an urgent referral for further investigation. I've only had about 7 weeks of symptoms but they include loose stool, some blood (not constant) and that's it really. I have a family history of cancer, although none are hereditary, so my anxiety is through the roof! How did you find the testing? I had sedation with dental work and tried to fight the dentist, so not sure how that will work if they try to do anything else! 

I've had similar symtoms for the past year, but also getting a temp and joint pains, my calprotectin is 1229, urgent referral to gastro, I'm so worried, my results say 'likely IBD'

Hi ellamb did you get any results xx 

Did everything turn out okay for you? X

Did everything turn out okay for you? X

Hey,

I am unfortunately still waiting on tests to be done, which if I had stayed with the nhs would be up to a 6 month wait. I have gone private and have an appointment with a gastroenterologist at the end of the month. My symptoms have carried on and it feels almost normal to constantly have to worry about blood and mucus. The gp said it's likely IBD because high calprotectin doesn't indicate cancer?!? Which I'm not sure is quite right? 

This is exactly what my doctor is sorta saying too! It's so worrying isn't it, I'm hoping these tests are quite quick my Calprotein was 3077

Honestly I don't know my score, but I think tests are taking a while to come back so be prepared for that. The waiting is the hardest part. This is my second cancer scare of the year so I am a bit tired now! Trust the process and know that you are on track and making all the right moves x

Awww no bless you! I've all my fingers crossed for you! Which area are you if you don't mind me asking ? Xx

South west, may be different elsewhere but I know wait times are very high here.

i do have the possibility that the stress of my first scare ( they thought I had malignant breast tumours which turned out to be benign after removal) has set off an IBD flair. This could be why I'm feeling less worried about this outcome.