Has anyone ever received a crohn’s diagnosis based on upper endoscopy and inflammation in the upper digestive areas?

[MsAmyM]

I strongly suspect I have crohns but my gastroenterologist does not listen to me and has insisted it’s just IBS for years.

I have many of the symptoms, and my fecal test and endoscopy showed inflammation. I also have 2 other autoimmune diseases. But he claims the inflammation is due to reflux and/or gastritis.

He also claims that an upper endoscopy is not used for diagnosing crohns, but I have read that crohns can affect any section of the digestive system.

Has anyone received a crohns diagnosis based on inflammation in the upper digestive areas?

[Viklou]

Did they take any biopsies? Inflammation can be caused by chronic reflux but an endoscopy can diagnose crohn's from the biopsies. Crohn's can be found anywhere from mouth to anus so possible

[MsAmyM in reply to Viklou]

They did do biopsies, but did not test for crohns

[Viklou in reply to MsAmyM]

They don't specifically test for disease as such they look at characteristics within the sample that suggest possible outcomes

[Steve2357]

I would not get to caught up with names. Crohn's Disease is normally diagnosed after a colonoscopy.

There can sometimes initially be difficult to tell the difference between Irritable Bowel Syndrome and Inflammatory Bowel Disease. Crohn's/Ulcerative Colitis.

They are both the same, it is just different parts of the bowel it starts, but can show up from mouth to anus.

[jackdup]

mine was with a barium follow through and later confirmed by a colonoscopy, but haven’t heard of anyone having one of these done in years now. They follow the barium as you swallow it and then take pictures every so often to follow it through the complete digestive tract. Have you had an endoscopy and if so did it confirm inflammation in the upper digestive tract? Why do you feel it is upper as opposed to in the intestinal tract where it generally is found? You are certainly correct that it can be found anywhere from the mouth to the anus but just wondered why you feel it is in the upper?

[MsAmyM in reply to jackdup]

They found inflammation in my upper digestive system using an upper endoscopy, but claim it can’t be crohns because of its location

[jackdup in reply to MsAmyM]

Well that is surprising and can understand your frustration. I’m not sure how they determine the inflammation is or isn’t Crohn’s.

[MsAmyM in reply to jackdup]

Good question to ask the doctor next time. Thanks for suggesting it!

[jackdup in reply to MsAmyM]

Good luck getting to the bottom of it and getting a definite diagnosis. Please let us know how you make out.

[4someone]

simple answer is ‘yes’. That’s how my crohns was discovered in the 80’s.

[MsAmyM]

thank you for responding!

[Mycatismyboss]

Could you request a PillCam Endoscopy? It produces a video of the inside of your entire small bowel. My Crohns was finally found with this method- as it’s the only way to properly see the small bowel (mine is in the terminal ileum). I had previously had gastroscopy with biopsies /colonoscopy/contrast MRI of small bowel - all came back unremarkable apart from diagnosis of gastritis. I had the PillCam 15 years ago and I think this procedure is far more common these days - good luck

[MsAmyM]

Thank you for the advice!

[kel89]

I am in the same predicament as you Amy. I’ve had several colonoscopies and a couple endoscopies. They say inflammation and that my pancreas is not producing enough enzymes. Gave me meds and let me go. But I’m not satisfied because I still have the foul smelling mucus and bloating sometimes. Without the Linzess, my bowels wont move as they should. I think it’s crohns also. What do we do?

[Rainbowtrio]

I am in the exact same boat as you and feeling very deflated and frustrated. Also same with other auto immune conditions which result in me being passed from pillar to post. The constant ill health is taking a massive toll on me.