Awaiting gastroenterologist, high calprotectin but afraid of them finding nothing
Hi folks,
I’ve had IBD type symptoms for decades but have always been brushed off with IBS diagnosis. I had a colonoscopy about 4 years ago which found nothing but they didn’t take any biopsies and did no further testing/imaging. In the past four years my symptoms have ramped up where I now have bloody diarrhoea multiple times a day, as well as recurring mouth sores, a recurring erythema rash on my hands, and quite severe joint pains in multiple locations.
Finally had a GP who tested calprotectin, which came back high (I don’t know the actual figure), and has referred me to a gastroenterologist for further investigation. The GP really thinks it’s IBD given symptoms and also family history (my aunt has crohns).
My question is, given the symptoms, what are the chances of the gastroenterologist finding nothing? After so long being fobbed off I’m just really afraid that it will happen again and I have read stories from others about having high calprotectin and other symptoms and then further investigation shows nothing so they are told that it’s “just severe IBS”. I really want to start treatment for whatever’s going on.
So I suppose I’m just a bit anxious about it all, any experience or words of wisdom to share with me please?
Thanks
Hi
, I'm sorry you've been going through this difficulty of getting a diagnosis other than IBS, especially since you've been suffering. That's really frustrating! In my view, it is important you talk to your doctor honestly and forthrightly about what you're experiencing and what your concerns are. I suggest that you ask for them to do a colonoscopy and take biopsies this time. They may also ask for more stool and blood tests, which I think can be helpful for more data points (you can get a CRP and ESRP from blood, which can help with diagnosis, and they may check for things like C.diff with the stool). While
I totally hear feeling anxious when talking to doctors, especially when you've had bad experiences with them. I always try to go in with the idea that we are collaborating on figuring out a solution, though, so I respect them and expect their respect too. I feel that this attitude has helped me stay calm while talking to doctors, but I've also been firm about saying that I need answers and help. Do you know when your appointment is? Please keep us updated about how it goes! -Eshani (IBD Team Member)
I've already had a few endoscopy's and colonoscopy. I've got hiatus hernia and gastritis. My Calprotectin has elevated again to 467. I feel I'm getting nowhere. There is mention of IBD but not a proper confirmation. 
Hi
. I just asked a moment ago under a different article if you had a colonoscopy and biopsy and just now seeing this. I'm still curious about whether you had a biopsy? They are not completely dispositive, but can certainly help with the diagnostic process. The hiatal hernia and gastritis can certainly occur with IBD, but, again, are not dispositive. I wish it was not so difficult to nail down a diagnosis. Are you being treated for you symptoms? Best, Richard (Team Member)
I don't think they can say severe IBS once you have a high calprotectin test, because the calprotectin test is one of the definitive ways of knowing it's MORE than IBS. If you're calprotectin is high, it's also pretty likely that they will be able to see evidence of inflammation on the scope. Having said that, a colonoscopy only looks at the colon, so if you have a colonoscopy and biopsies and it doesn't come back with anything then you will need to push for further investigations to have a look at the small intestine.
~ Sahara (team member)I get me colonoscopy on Wednesday and waiting for MRI to look into the smaller intestine where the camera doesn't go as far.
My Calprotectin has gone down at the moment but it rises when I've got a flareup.Hi
. Glad you are looking beyond just the colonoscopy to get answers. I thought you might be interested in this article from our patient leader Amanda on just this topic, including getting an MRI with contrast to look for issues: https://pmc.ncbi.nlm.nih.gov/articles/PMC5490540/. In addition, this article from our editorial team looks at options for if IBD is missed on a colonoscopy: https://inflammatoryboweldisease.net/living/diagnosis-missed-colonoscopy. Included is something called a capsule endoscopy or pill cam. Your doctor should be able to provide additional information. Best, Richard (Team Member)
I seem to be in the same situation I've been suffering for nearly 3 years now.
I hope you get answers as to why you are having these symptoms from your colonoscopy. Do keep us posted. Do you know what kind of prep they are offering you? You might find these articles helpful: https://inflammatoryboweldisease.net/living/colonoscopy-prep-crohns-colitis
https://inflammatoryboweldisease.net/living/colonoscopy-prep-foods
https://inflammatoryboweldisease.net/living/crohns-colonoscopy-prep-drink
-Elizabeth (team member)
