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Stool sample not inflamed but in pain

Tue, April 09, 2019 3:05 PM

Hi I'm new to here. I have colonic chrohns I have what i think has been quite mild. I've been hospital recently to see dr as been in so much pain and eating again, starting from just under chest bone all the way to bottom of tummy. Pain in back, awful fatigue. Stool sample came back fine and bloods. They are now going to do another colonoscopy. Has anyone had this ? I feel like that shows there's nothing wrong with me but I'm in so much pain.

Amylee
Joined Apr 9, 2019

Thu, April 11, 2019 9:26 AM

Reply posted for Amylee.

I'm not sure what "colonic" crohn's is. I have CD, diagnosed in 2016 (well, officially since 2018). I had 3 colonoscopies (two from hospitalizations) showing pancolitis that were "indeterminate" but consistent with Crohn's. I don't know if they did the fecal calprotectin test, though other fecal testing was done each time. The first time, I was not diagnosed, just treated as if I had gastritis. Symptoms resolved eventually with OTCs and diet. 2nd colonoscopy, pancolitis indeterminant but consistent with CD, still not officially diagnosed but given high dose steroids for several months. Symptoms resolved eventually. Moved to different state - 3rd colonoscopy in 2018, pancolitis indeterminate but consistent with CD. GI Dr ran Promethius blood test which was negative for IBD, but he started me on Humira anyway - felt I had all the signs/symptoms of it. I responded really well to Humira. I moved back to original state and first GI Dr. who reviewed previous tests, saw the Promethius test, ran a fecal calprotectin which was off the charts positive.

So my point is that not all tests are 100% accurate. There are false-positives and false-negatives, even the "gold standards" like colonoscopies. Doctors should weigh all the evidence and then treat accordingly based on their clinical experience and knowledge. Sometimes you have to just keep going back until your voice is heard.

Best wishes!

crisanderson
Joined Apr 5, 2019

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