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Doctor tells me clinically Crohn's but...

W

Wallace7777

About 4 years ago, on my wedding night, me and my bride had just made it to the reception and was having a wonderful time drinking and celebrating when all of a sudden I get nauseated, weak and started sweating. I make it to the bathroom and have this violent reaction from every orifice and stayed in the bathroom the rest of the night... I felt like I let my new bride down. Went the Aruba for the honeymoon and felt nauseated the entire time. Fast forward a couple of years and still having on and off battles(mostly on) with nausea, sweats, heart racing and diarrhea as well as occasional vomiting. The last couple of years I have had two endoscopes, MRI's, three colonoscopies, fluoroscope etc but no biopsies have come back telling us anything. I have ulcerations of the intestinal tract in many places as well as swelling of the terminal ileum on all sides(whatever that means) shown during colonoscopy and confirmed by MRI. I just had another Endo and colonoscopy and the results came back without confirming Crohn's, the doctor says clinically I have crohn's just not confirmed by biopsies. I have tried Pentasa that gave me terrible stomach and intestinal pain as well as bleeding and even worse diarrhea. He is going to put me on Entocort now... any one have any input what I should be feeling, doing, or thinking. I am tired of feeling miserable but not sure what to do or think any more?

Thanks for any and all input... or just reading.

Eric
 
my little penguin

my little penguin

Moderator
Staff member
The only way to get pathology to check the crohn's box sometimes is if the find noncasesting eptheloid granulomas which only 30% of people with crohn's have.
Pentasa typically is not enough as a monotherapy for crohn's.
What other therapy is your doc putting you on for maintence since entocort is a rescue med which gets rid of inflammation quickly but is a steriod so it can be taken long term.
Did they do a pill cam to visualize the small bowel ?
 
W

Wallace7777

I am taking Dexilant for GERD... when I control acid output, things are, not great, but better. Entocort is the only thing he has prescribed for me, I have to go by the pharmacy to pick it up tomorrow. That is all he has me on right now. I only recently did the fluoroscope which he said was to check for obstructions etc to see if I can do the pill cam but haven't heard any more about the pill cam. When I did the fluoroscope, I got really nauseated and it only took 15 minutes and the barium had already made it to the end of my large intestines. The radiologist said that was unusual how fast it went through me but then said... I guess that is why you are here, I said yes! He just wants me to take Entocort for 3-4 weeks and then I see him again on the 16th of next month. I am sick of feeling sick and not sure what to think any more.
 
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