High calprotectin, bad symptoms and struggling to get help...

[Purpleberries]

Hi all, I’m new here and hoping someone might be able to help. I’m in my early thirties and have been referred to Gastroenterology within the NHS.

Over the last year or two I have developed issues with my bowel - lower right abdo pain and a lot of mucus in stools and fatigue is very bad. These flare ups are also accompanied by cystic acne on jawline and nasty skin abscesses on my buttocks (sorry about tmi!!!). Stool tests showed raised calprotectin (350) and I was sent to gastroenterology where I had colonoscopy that showed microscopic colitis near the terminal ileum. I was given anti-inflammatories (asacol) for this and ticked along for a few months before being hit by the worst flare up yet. My calprotectin levels were almost 2000 and they should be under 50!!! Was sent for urgent colonoscopy and NOTHING was seen! And I had a very dismissive locum gastroenterologist do the procedure because my regular doctor who is very helpful was on annual leave. This locum didn’t even take biopsies and told me I had IBS. Well you don’t get a calprotectin level that high with IBS... but please correct me if I’m wrong?

I’m getting quite depressed about all of this and I was so upset that the locum didn’t take me seriously in this procedure. I actually ended up in tears in recovery as I felt like the whole process was a waste of time after all that horrid bowel prep and then a painful colonoscopy... Why on Earth would you not take biopsies if I was showing microscopic colitis in the past?! I wanted to say something in the procedure but I was sedated and sucking on gas and air and just couldn’t manage to speak up!

I’m so frustrated and now I can’t see my gastroenterologist until November even though I feel like complete SHIT. Pun intended!!!! I just wondered if anyone else has experienced similar to this and if they had any luck in getting answers and got their symptoms under better control? Thank you and sorry for the long rant!

[bantam12]

With colitis you will get flare ups now and again, doesn't mean you need a colonoscopy and biopsies every time, as you already have a diagnosis and the doc didn't see anything worrying he presumably didn't feel biopsies were necessary.

Do you increase your Asacol dose when flaring ? I normally take one tablet a day but increase if needed.

[Purpleberries in reply to bantam12]

Hi bantam12 , I didn’t increase the dose with a flare because I haven’t been advised by my doctor to do this. I will ask about this the next time I see my consultant or gp. Thanks!

[maceyukk]

My circumstances aren’t exactly the same but I had a clear colonoscopy but high calprotectin and bloods came back with inflammation. I ended up getting diagnosed with an MRI. You don’t normally get a diagnosis of IBS with higher calprotectin levels especially into the 1000’s !

[maceyukk in reply to maceyukk]

Sorry should of mentioned my Crohn’s is in the small bowel. X

[NL88]

Check for Infection and Parasites ASAP. Ask for PCR parasites test for Giardia and Amoeba. Treatment is Flagyl and Bactrim