Crohn's Disease Forum » Your Story » Not sure if it's Crohn's or not, but here I am :)

02-18-2014, 10:13 PM   #1
Join Date: Feb 2014
Not sure if it's Crohn's or not, but here I am :)

My name is Lindsey. I'm 32, and for the past year have had a lot of trouble with my gut. It started with constant nausea and bloating with occasional pain. My doctor did an endoscopy looking for H. Pylori and found inflammation in my stomach and duodenum. H. Pylori was negative, and the biopsy he took looking for evidence of Celiac Disease was negative. So, he sent me off for a gastric emptying study that was inconclusive. Since my symptoms fit gastroparesis, he gave me a tentative diagnosis of gastroparesis and put me on Domperidone and a low-residue diet.

The combination of diet changes and meds have helped with the nausea, but the pain started getting worse. I have had a few episodes now where I've gone to bed feeling fine, only to be woken up out of a sound sleep by pain. I've also added alternating constipation and diarrhea to the mix.

So, my GI sent me to have a CT scan, which showed inflammation in different patches of my colon. The CT results made my GI order a Colonoscopy. The Colonoscopy showed...... nothing. The biopsy from the colonoscopy showed nothing. I was told that my doctor still can't rule out Crohn's, however.

I am left wondering what the heck is going on with me, and suspicious that I might have Crohn's after all. Have any of you gone through anything similar?
02-18-2014, 11:55 PM   #2
Forum Monitor
Join Date: Apr 2009
In case no one responds tonight, you should know misdiagnosis is quite common with CD/UC. I'm sure many people here will be helpful.

In the meantime have you searched the forums for questions about uncertain diagnosis?
02-19-2014, 07:31 AM   #3
Join Date: Feb 2014
Thanks, Kel. I just noticed the "Undiagnosed" board (whoops!), so I am going to post this over there right now.
02-19-2014, 11:16 AM   #4
SarahBear's Avatar
Join Date: May 2012
Location: Charleston, West Virginia

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Welcome to the forum, Lindsey!

Has your doctor suggested any other possibilities? Are you having any further testing done?

As kel said, it's not uncommon to have trouble securing a diagnosis. A lot of conditions have overlapping symptoms, and the conclusive evidence we need can come and go (such as inflammation). Is your doctor determined to keep trying until they find answers for you?

So the inflammation on the CT scan was definitely in your colon and not your small intestine? I can't imagine they would mix it up, but it's possible. Has a capsule endoscopy been discussed?

I hope you find answers soon, Lindsey!

Diagnosed with Crohn's disease 12/6/08.
Have taken: Prednisone, 6mp, methotrexate, Pentasa.
Currently waiting for a new medication!

Check out the Crohn's forum chat!

02-19-2014, 11:56 AM   #5
Senior Member
durwardian's Avatar
I was just talking to another person on the forum with the same issues, also waiting for results and continuing testing. I also went for years without any diagnosis, and my colonoscopies, biopsies, and blood work were always fine.
My immunologist finally figured it out, immune deficiency was the cause for me. I just got approved for continuing treatment (hurray!). So I should be snapping out of my current flare up as soon as the treatment gets underway. I hope you feel better soon. Many people find relief in diets and taking all the medications.
02-22-2014, 08:03 PM   #6
Join Date: Feb 2014
Thanks for the responses.

I realized that I forgot to list all of the things that my doctor found on the initial endoscopy last year. I have esophagitis, gastritis, and duodenitis in addition to the "now you see it, now you don't" colitis. I have a history of severe acid reflux, but I had a Nissen Fundoplication for that in 2010 so I'm not on any PPI's (they didn't work for me anyway).

I guess I'm wondering what my next step is. I can't keep having bouts of pain that either wake me out of a sound sleep or stop me in my tracks at work; I need to get to the bottom of what's causing all of this. Any and all input would be welcomed.

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