For those with severe D-predominant IBS

Diseases & Conditions Irritable Bowel Syndrome
1
I learned something new at my GI appointment yesterday and wanted to share the info...
 
If any of you have experienced severe, watery, chronic D, abdominal cramping, and weight loss; have had bacterial and/or viral infections and IBD ruled out; and have been told you have IBS, you may want to consider asking your doctor about getting a 5-HIAA test.  This is especially necessary if you have "flushing" symptoms, such as severe reddening of the face for minutes or hours at a time or facial swelling.  The 5-HIAA test is very simple - you collect all of your urine for 24 hours in one container - and can tell you if you may have a carcinoid tumor.  Carcinoid tumors are relatively rare, slow-growing neuroendocrine tumors that cause symptoms such as those I listed above. 
 
I am doing the 24-hour urine test tomorrow.  I'm kind of freaked out, of course - but I'd rather know than not know!
 
 
2

Hi Sarita,

I am interested to know how your test went?  I have the flushing symptoms and would like to know more about the 5-HIAA Test.

 

Thanks

 

Anns

3
Anns, my test was negative, as I was expecting.  If you have a lot of flushing episodes plus severe diarrhea, you might want to consider that test...also tests for other neuroendocrine hormones like metanephrine, calcitonin, etc.  They are all very easy blood or urine tests.  How long have you had symptoms?
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Hi Anns,
Welcome back to the forum!
I hope you can find the help you need here.
Take care and keep posting!

Co-Moderator for the IBS Forum
 
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5
In total Ive been suffering for 5 years but it only got really bad about a year ago.  Since then Ive been on different pills and meds but to no avail.  Ive had a flexible sigmoidoscopy so far but nothing else, my doctor had refferred me back for further tests though and Im waiting for an appointment.
The biggest problem for me is the 'D'!.  Every morning it comes like clockwork and Im really fed up with it.
 
How long have you been suffering?
 
Anns
6
Ann, I just started having major diarrheal problems a year ago.  It got so bad that I lost 30 pounds over the course of three months; up to 25 bathroom visits per day; I thought I was going to go out of my mind.  My GI tried to be as thorough as possible because it was so severe and after a negative colonoscopy did these neuroendocrine tests.  You should definitely ask your doc about them if you have diarrhea, weight loss, and flushing.