Crohn's Disease Forum » Support Forum » Undiagnosed Club » Undiagnosed with thickening in loops of jejunum

05-11-2016, 03:39 PM   #1
Join Date: May 2016
Location: Anchorage, Alaska
Undiagnosed with thickening in loops of jejunum

Hi all,

I'm a 27 year old female. I first went in to the doctor with pain a little to the left and below my belly button, that started as a light burning sensation but which has gotten worse over the last month and a half. A CT scan showed thickening of the loops of the jejunum, consistent with enteritis. The doctor thinks maybe crohns, and i'm scheduled for a pill cam but insurance is giving me a hard time about approving it. Aside from pain after eating and loose stool I have no other symptoms.

Anyone else with crohn's that is showing up mainly in the jejunum? Or that had a ct that showed just the jejunum but found later it was in other parts of the body? I'm nervous that it isn't crohn's because the doctor said it's unusual for it to just show up there, and offhandedly mentioned lymphoma as another possibility in a way that freaked me out (although my blood work is normal). It feels weird to wish for crohns but I really don't want cancer. Any feedback or experience you could share would be appreciated!
05-11-2016, 10:29 PM   #2
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ronroush7's Avatar
Join Date: Oct 2013
Location: vienna, Virginia

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Everyone is different so I think it could be possible to have it in the jejenum. In fact, I think this type of Crohns is called jejeunitis or something similar. Hoping the best for you. Let us know how you are doing.
12-05-2016, 10:08 PM   #3
Senior Member
Join Date: Jul 2007
Location: Garnet Valley, Pennsylvania
I am having issues too I had a camera a few months ago and nothing was found. I also did a cologuard test last year and that did find signs of cancer - however my Doctor could not find any symptoms - I am scheduled for a CAT scan soon to see the results

May be you could ask the insurance company for a Cologuard test and hopefully yours comes out negative

Good luck
12-06-2016, 12:33 PM   #4
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Jabee's Avatar
Join Date: Oct 2016
Location: Massachusetts

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Hi Iveknownrivers:

My crohn's was first found in my duodenum, then my jejunum and ileum, then my mouth, duodenum and jejunum again, and now further down in my terminal ileum. Crohn's of the jejunum is called jejunoileitis. While it's true that crohn's often shows up in the terminal ileum, it can and does affect any portion of the GI tract. A CT scan is a pretty reliable indicator of crohn's and can be very helpful in visualizing the jejunum and top part of the ileum which are unreachable by traditional scopes, so that may be why your insurance is refusing to pay for a pill cam. I hope your GI is helping get the insurance company to change its mind.

Did you have an endoscopy or colonoscopy? Or did you go straight to a CT scan? And are you on any medications? Try not to worry about the possibility of lymphoma; there are many other symptoms of lymphoma and I'm surprised your doctor brought it up without further testing. Another imaging test which your insurance might cover is an upper GI with small bowel follow through.

Hope you feel better.

Crohn's Disease Forum » Support Forum » Undiagnosed Club » Undiagnosed with thickening in loops of jejunum
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