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Isolated Jejunal Crohns as adult?

Hello, I’m 35 years old. I have been very ill since March 14th. I have lost 30 pounds and have intense abdominal pain that ranges from contractions, a deep burning ache, and stabbing pain. I run fever nearly every day, 99.6-100 degrees. My body aches and I am very fatigued. I have cycles of nausea and vomiting and have to go on liquid diets bc of possible small bowel obstructions. CTE finally revealed a 10cm segment of inflammation and thickening of my proximal Jejunum. I am being referred for a double balloon enteroscopy for biopsy. I’m looking for others who have Jejunal Crohns, bc this seems to be quite rare? Any help or input would be great. I feel very alone. They aren’t sure if it’s Crohns or not. I don’t know what to think, I just want to feel better. Thank you.
 
Location
San Diego
Hi Brandi,
I'm sorry you are feeling so poorly. You are correct that the jejunum is an unusual site for Crohn's but it is not unheard of. About 70% of all cases of Crohn's involve the ileum, or ileum + colon, or ileum +jejunum. Jejunal Crohn's alone is not common, but in Crohn's anything can happen and no two cases of Crohn's are exactly alike.

The biopsy should be telling, but even if they don't find any distinctive granuloma lesions in the pathology specimens it is still possible that it will turn out to be Crohn's. I suggest that you ask your GI about doing a capsule camera endoscopy ("pill cam") to visualize the interior of the jejunum. My Crohn's is higher up in the ileum - beyond the reach of the colonoscope. And they could never definitely diagnose it until they did a capsule camera endoscopy and the doc finally caught sight of the ulcers.

The first key thing of course is for you to get a firm diagnosis. Then they can begun more specific therapy and get you into remission. Many of us on this forum have suffered symptoms similar to yours. And many, including me, have found relief and stable remission thanks to modern therapies.

There is currently no cure for Crohn's disease. The disease will require constant management but with proper therapy there is every hope and expectation living a more or less normal lifestyle free from most and perhaps all of your symptoms.
 
Hi Brandi,
I'm sorry you are feeling so poorly. You are correct that the jejunum is an unusual site for Crohn's but it is not unheard of. About 70% of all cases of Crohn's involve the ileum, or ileum + colon, or ileum +jejunum. Jejunal Crohn's alone is not common, but in Crohn's anything can happen and no two cases of Crohn's are exactly alike.

The biopsy should be telling, but even if they don't find any distinctive granuloma lesions in the pathology specimens it is still possible that it will turn out to be Crohn's. I suggest that you ask your GI about doing a capsule camera endoscopy ("pill cam") to visualize the interior of the jejunum. My Crohn's is higher up in the ileum - beyond the reach of the colonoscope. And they could never definitely diagnose it until they did a capsule camera endoscopy and the doc finally caught sight of the ulcers.

The first key thing of course is for you to get a firm diagnosis. Then they can begun more specific therapy and get you into remission. Many of us on this forum have suffered symptoms similar to yours. And many, including me, have found relief and stable remission thanks to modern therapies.

There is currently no cure for Crohn's disease. The disease will require constant management but with proper therapy there is every hope and expectation living a more or less normal lifestyle free from most and perhaps all of your symptoms.
Thank you so much! Your reply is very helpful. I am wondering if this is the only area I am affected. I have had so many tests and scopes! My doctor said I’m unfortunately not a candidate for PillCam. I do think after this Jejunal biopsy, he may re-attempt the colonoscopy to try and view the ileum. I’m on my 2nd GI and being referred to the 3rd, bc mine can’t do the balloon procedure. I am blessed to have found a very determined GI doc. The first one left me hanging out to dry- too difficult of a case I suppose. Thanks again.
 
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