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 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)
