PLEASE HELP......I am fusterated and confused (Strange situation) Wheres' My Illeum?

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New Member

Date Joined Nov 2008
Total Posts : 6
   Posted 11/27/2008 6:37 PM (GMT -7)   
For the past 4 years or so i have always been having trouble with digestion = acid reflux, indigestion, burping....i also get a few flair ups with my bowels - sort of IBS type symptoms
But > problems with acid indigestion then bowel discomfort
122 pounds was at 138 (3 months ago) 6 feet tall...never been able to gain weight/ trouble with all sorts of foods.......very active love sports/ outgoing etc.
(i dont drink, i dont smoke, i try to eat a good diet)
So I am in graduate school, and totally hit a wall - end up in the ER (throwing up acid -dry heaving), (different colour stool/ random stool - soft, watery etc).
They say i may have anxiety and give me some SSRI's, and a ton of acid reducers (Nexium etc.) and a medication called librax, doperidome - all kinds of meds - all mixed over the next month
Of course seeing diffferent doctors and being on soo many different meds trying to bandaid the problem makes things worse and I end up back in ER and say there is something phsyically affecting my body. (look at my history this has been here for years) - so we gather my past results and realize all i have ever had done is an endoscopy/ US and I get into see a GI in less than 3 days!
I get a CT scan done and 15 vilas of blood - they appear nomal with some slight distention
I get an endoscopy/colonscopy done - they appear fairly normal - but a biopsy from my small intestine (illeum shows inflammation - when looked under a microscope).
Here's where things get WEIRD!...they order up a small bowel folllow through (barium/xray) to see what is going on in the illeum (they suspect chrons) - but they cant find the seems although everyones anatomy is different which is ok) but in my case its not b/c one part of my small intestine is blocking the illeum making it very difficult for the Radiologist to get a picture/visually see the illeum...he digs around for a few hours....and tries o locate it by moving my intestines around but not much luck.....its there he can see it barely but cant gain access to it!
I dont get sharp pains (sometimes higher up near my stomach) but not much lower, more cramping then pain.....I do get a lot of other symptoms could this be chrons? The Radiologist said based on my anatomy it may be difficult to tell forsure if my illeum does in fact have chrons? 
He Recommended i do another CT when im irratted...but ive been sick for 3 months now...hes gonna consult with the GI specialist that did my other tests....does anyone else have an "invisible" ILLEUM? he said if we do the Small bowel follow through again were likely not to see anythign again based on the anatomy...........
What should i do?
Thanks for anyone who can help/ give me insight on this!

Veteran Member

Date Joined Feb 2007
Total Posts : 1010
   Posted 11/27/2008 7:50 PM (GMT -7)   
Hi Mark:

This is not unheard-of. SBFT are not the gold-standard anymore for imaging the small intestine for that very reason. There is another procedure a CT enteroclysis examination that is sort of a combination of a CT scan and a small bowel followthrough.

After a dozen unconclusive SBFTs over 12 years, radiologists finally visualized the distal portion of what's left of my small bowel (where it has been stitched to what's left of my colon.

Loops of bowel can remain obscured for several reasons -- sometimes loops are adhered to other loops by scar tissue and they just won't separate. Sometimes the barium contrast medium transits through the small bowel too fast. After it dumps into the large intestine, the large segments of the small intestine become obscured by he opaque large bowel segments.

Hope you are able to get a definitive diagnosis soon.

30+ years living with Crohn's.

New Member

Date Joined Nov 2008
Total Posts : 6
   Posted 11/27/2008 9:17 PM (GMT -7)   
Thanks for the would of been nice to hear this from the radiologist rather than him saying well what meds are you only on 2 meds currently.....nexium and librax.....but its kind of a band aid right now til they actually find what is up.....i dont know if i have chrons it would just be nnice to rule it out then i can focus on foods/ allergies perhaps?
Thanks for your reply again, it is really appreciative....

Veteran Member

Date Joined Jan 2003
Total Posts : 6131
   Posted 11/28/2008 3:42 AM (GMT -7)   
what Bsteen said, good luck though.

Veteran Member

Date Joined May 2003
Total Posts : 9448
   Posted 11/28/2008 8:34 AM (GMT -7)   
1] I would request the Agile Patency Capsule to ensure that the pill camera will travel thru w/o getting "caught" somewhere. If I passed the APC I would then request the pill camera endoscopy.
2] Barriing that, CT Enteroclysis would be my next request.
3] And barring that, CT Enterography.
4] In desperation, the Ceretec White Blood Cell scan.
Another consideration is the double balloon endoscopy but there are limited locations doing them.
I would want copies of the results of all my tests, including ,my blood tests especially, to see what blood tests were run and the results for myself.

Some people are like Slinkies... Not really good for anything, but they still bring a smile to your face when you push them down a flight of stairs.

Post Edited (CrohnieToo) : 11/28/2008 8:37:12 AM (GMT-7)

New Member

Date Joined Nov 2008
Total Posts : 6
   Posted 11/28/2008 8:53 AM (GMT -7)   
Thanks soo much to all of you....this has been a lot of help......sometimes with doctors you have to really push them for an answer otherwise they just turn you aside...i had a heart problem for 3-4 years of well and years of tests and stuff an finally after the they got a decent diagnosis and 2 surgies i got it cured...i giess if i got through that i can get through this but....the anxiety/ stresss is buiding and ive had a lot of these tests done in just few weeks body is just done

Veteran Member

Date Joined Mar 2006
Total Posts : 2739
   Posted 11/28/2008 1:14 PM (GMT -7)   
Same here, that test is useless for me, if that's what they want to look at, since they can't see the TI with it. They told me that when I had the test, only to have my GI call me a few days later to tell me it all looked good. Uh no, they couldn't see anything! LOL
Diagnosed with Crohn's Disease 2/06 after sever GI bleed. Has been suffering since 1998. History of rectal fistula and gallbladder removal. Taking Asacol, Questran, Toprol XL (for high blood pressure). Tapered off prednisone a month ago!

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