Hi Simon,

I'm sorry to read about your worries and I can understand this must be unsettling. It's good to hear you have an appointment booked and hopefully it won't be long before you can find out more.

I see you've been speaking to others on the forum so I hope that has been helpful. And if anyone else here has similar experience then hopefully they'll add further replies to your post here.

Wishing you all the best,

Ben
Cancer Chat Moderator

So roughly eight weeks after being told by my GP "I'm sorry to have to tell you, but...", and the worry of not knowing exactly what was wrong since then, things are looking up. I'm posting this message so that anyone who reads it can stay positive, and wait for a professionsl diagnosis, rather than diagnosing themselves using online material (as I did). 

After my initial consultation with a specialist, I was booked in for a colonoscopy and gastroscopy at the same time. Apart from being scared of what they might find out, the procedures themselves were completely painless - I think the sedatives caused me to fall asleep during the process. I certainly wasn't even aware of a camera being put in me. Following the procedure I was informed that everything looked normal, but I would have to wait ten days for the biopsy results. In the mean time I was to have a CT scan of my abdomen using a dye contrast. This was again painless, but my stress levels had by this stage, gone through the roof. Ten days later, and feeling more anxious, my consultant informed me that the only problem found was a granuloma, which might indicate either Crohns desease or a bowel infection. Of course I thought the worst. The last procedure I had was called a capsule endoscopy, where I had to swallow a tiny camera, which looks deep inside the small bowel (the part that the colonoscopy can't reach). The camera sends photos wirelessly, to a hard drive you wear on a special belt. Again swallowing the camera was easy and painless. Yesterday, I received all my tests results, which indicate nothing more serious than an infection. They have ruled out cancer or an IBD. As you can imagine I am very relieved. The moral of the story, do not diagnose yourself. Wait for a diagnosis, and pray that everything will work out. Stay positive for yourself and your family.

Mines is 1800 and doctor has told me that's as high as lab can test too , been on steroids ten months in the last year and a half every day is getting worse , IBD team contacted me today I'm waiting on emergency colonoscopy appointment...  I'm dreading it being cancer 

Try not to worry. I was told that a very high reading doesn't usually mean cancer. A calprotectin level of 200/300 can sometimes point towards cancer, but not usually 1800.  I was told that above 600 is usually either a false positive or an IBD like Chrones or Collitis. And an IBD is very treatable, so try not to worry. I worried myself sick and for me it turned out I only had diverticuler.

Hi Simon, 

My last Calprotectin Level was 3305 and I had a Colonoscopy procedure on the 3rd of March, I am still waiting on my biopsy results. I hope you get some clarity soon and try not to overthink which is hard when you are feeling anxious. 

Please keep us updated :) 

Jem  

Best wishes Jem. My calprotectin was listed as greater than 600 (600 being the cut off point in the UK). So my actual level could have been in the thousands. I'll never know the exact reading. The final outcome for me was that i had an infection and diverticuler, so thankfully nothing too serious. 8 months on, after letting my diet slip, I'm trying to eat more foods with fibre in them, to control the diverticuler desease.

Thank you for your good wishes. 

I thought I might have had an infection but my stool sample was negative so that's why my physician referred me for a Colonoscopy on the side of caution. 

I am trying to eat better myself and have a balance of protein and vegetables to help regulate my bowels. 

My bowels have been fine since the clear out so it's probably nothing but I am not a fan of the wait. 

Jem x

Let me know if you need any advice, from someone who has been through it. And let me know how it goes.

I hope you are well. Let me know if you need any advice from someone who has been through it.

Simon.