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Undiagnosed, living abroad, worried!!

Hi all. Ive been lurking for a few weeks and this seem like a really friendly and helpful place so I thought I'd post!

Im currently undaignosed and living in Japan, here is what's happened so far:

Symptoms: started about a month ago. Discomfort in my lower right abdomen (not really pain but rather a feeling of fullness). This discomfort is worse when I am lying down. I am also constipated and have mucous in my stool.

Tests: so far I have had a CT scan, colonsocopy and small bowel follow through (i think? they pumped barium into my small intestine and took photos). All the tests were fine.

I know it might seem like im worrying about nothing but here's why I'm so scared: about two months ago I started taking ACCUTANE again and i'm aware of the possible links with crohns! Also about a month and a half ago I was in Cambodia and got quite ill for a few days. Those are the obly two things in my recent life that I can attribute to possibly starting some stomach issues.


Sooooo... my many question for all you is:
1.) What further tests should I request to definitively rule out crohns??
2.) What else might I have??

Many thanks!!
 
Hi Shepz

Be assertive with your doctors don't let it slide push until you get the answers, which i hope will be something much simpler than crohn's.
 
Shepz do you have a family history of crohn's?
Hi, thanks for replying so quickly. No family history.

I should add that my symptoms have stayed pretty much the same for a month and a half. Not any worse, nor any better. Very strange!
 
Hi Shepz

Be assertive with your doctors don't let it slide push until you get the answers, which i hope will be something much simpler than crohn's.
Yeah so far the Japanese doctors have been very unsupportive. A lot of 'it's all in your heard/ you're just homesick.'

I'm scheduled to return home to the UK in mid August but I'm tempted to leave now just so I can see a specialist and find out what's wrong with me!
 
You may need to prepare yourself for the same attitude from UK doctors unfortunately.

I understand you're worried, but given the normal test results you've had so far Crohn's doesn't sound all that likely. A capsule endoscopy and an upper endoscopy could rule it out more definitively. Have you had any blood tests done? Or an abdominal examination?

I know that heartburn and reflux often worsen when lying down, though it doesn't sound like your discomfort is in the right location for it to be that. Some types of hernia can cause pressure or pain that's worse when lying down and/or when you bend over.

What do you know about the cause of your illness when in Cambodia?

Sometimes reaching a diagnosis can take a while but keep going with the doctors, you need to know what's going on. I hope you get some answers soon.
 
You may need to prepare yourself for the same attitude from UK doctors unfortunately.

I understand you're worried, but given the normal test results you've had so far Crohn's doesn't sound all that likely. A capsule endoscopy and an upper endoscopy could rule it out more definitively. Have you had any blood tests done? Or an abdominal examination?

I know that heartburn and reflux often worsen when lying down, though it doesn't sound like your discomfort is in the right location for it to be that. Some types of hernia can cause pressure or pain that's worse when lying down and/or when you bend over.

What do you know about the cause of your illness when in Cambodia?

Sometimes reaching a diagnosis can take a while but keep going with the doctors, you need to know what's going on. I hope you get some answers soon.
Hi UnXmas,

Thanks for the reassuring words.

I do find it strange that my feeling of RLQ discomfort is worse when I'm lying down.

I never sought treatment for the illness in Cambodia. Had flu like symptoms for two days and then felt better.

The only reason I remain skeptical even with all my negative test results is that I've read that a SBFT isn't great about detecting early Crohns?
 
The forum Wiki has some figures comparing SBFT with other tests:

For detecting Crohn's Disease, one study found the following:

The Sensitivity and Specificity was as follows, respectively: CTE = 82%/89%; ileocolonoscopy = 83%/100%; capsule endoscopy = 74%/53%; and small bowel follow-through = 65%/94%[1]
http://www.crohnsforum.com/wiki/Small-Bowel-Follow-Through-SBFT

So yes, it can miss Crohn's, but with the colonoscopy as well that helps rule out a Crohn's diagnosis. As I said, an upper endoscopy and capsule endoscopy could also help, and a small bowel MRI is another test I've had. And of course these tests are not just ruling out Crohn's, they're ruling out other digestive problems too. I wonder if the discomfort could be coming from something outside the digestive tract? The lying down part - the only things I've heard of worsening when lying down are indigestion/reflux and some types of hernias (though hernia symptoms can also improve with lying down).
 
Location
SoCal
I think you have to screen for parasites or other bacteria or pathogens you could've picked up in Cambodia since it seems linked to the onset of symptom.
Stool tests for parasites, and might as well do the fecal cal protectin to screen for Crohn's
 
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