Discovering The Cause of My IBS-D

Hi, I am a male in his late 20s. Five years ago I started having terrible abdominal pain, so severe I was unable to sleep on my side at night with out experiencing significant pain. I saw five different GI doctors, across four different states, each diagnosing me with IBS-D. I tried Amitriptyline, Librax, Xifaxan, and Viberzi but found little relief from these medications.

Last year, I saw two GI doctors at the Mayo Clinic in Rochester, MN (I traveled 1000 miles to see them). Both doctors recommended I get tested for Primary Bile Acid Malabsorption (pBAM), also referred to as Primary Bile Acid Diarrhea (pBAD). The test was a 48hr stool test, that examined the aggregate amount of bile acids in my stool and the percentage of Chenodeoxycholic Acid (CDCA) and Cholic Acid (CA) in my stool, relative to the total amount of bile acids. When I got my results back both levels were abnormal, indicating I had excessive amounts of bile acids in my stool and an above average percentage of CDCA and CA in my stool. According to my doctors, CDCA and CA are very aggressive bile acids, and the above average percentage of these types of bile acids passing through my colon is most likely the cause of my pain.

I have since tried two different bile acid sequestrants, Welchol and Cholestyramine. Unfortunately, neither medication improved my pain. However, both medications improved the consistency of my stool. More recently, I tried Intercept Pharmaceutical’s FXR Agonist, Obeticholic Acid, and Novartis’ FXR Agonist, LJN452. Both medications provided relief from my pain, although Obeticholic Acid is incredibly expensive and LJN452 is not commercially available (the price of Obeticholic Acid will likely drop dramatically if FDA grants it Accelerated Approval for NASH in late 2018 / early 2019). I could talk for days about these medications but I won’t. If you’re curious you can do your own research.

Three interesting points to note:

  1. According to Michael Camilleri, a research doctor at the Mayo Clinic, 25% to 50% of patients with functional diarrhea or diarrhea-predominant irritable bowel syndrome (IBS-D) also have evidence of pBAD.1
  2. The Mayo Clinic Laboratory is the only lab in the U.S. to offer the 48hr bile acids stool test. Although, any doctor can order the test through the Mayo Clinic Lab.
  3. I generally pass a yellow fluid (bile acid) in my stool and rarely have watery diarrhea. Although, I’m sure symptoms can vary significantly.
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