Skip to Accessibility Tools Skip to Content Skip to Footer

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.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The IrritableBowelSyndrome.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Camilleri, M. "Bile Acid Diarrhea: Prevalence, Pathogenesis, and Therapy." NCBI website. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4413966/. Published May 2015.

Comments

  • dkcrs3
    2 years ago

    Hello Mark,
    Our stories are nearly identical. I also am a male in his late 20s suffering from the exact same symptoms, and also went to Mayo clinic last June. I had the same result on my bile acid stool test. I also tried welchol and cholestyramine with no success. I have been desperately trying to get access to Obeticholic Acid, but have been told, both by Mayo Clinic and by other doctors, that Obeticholic Acid is not obtainable through insurance (it is roughly $7000/month without insurance), and was not told anything about this FXR agonist. How did you get access to Obeticholic Acid and the FXR agonist?? I am suffering severely, as I’m sure you know well. Please, please, please contact me back with any information you have.

  • markph author
    2 years ago

    Hi
    Regarding Obeticholic Acid, I paid $3,268.93 to try 14 10mg pills. I tried taking just 10mg the first 4 days but didn’t notice much relief. Granted obeticholic acid takes time to work.

    The last 4 days, I took 2 and half pills and noticed relief. If you annualize the price to take 25mg of Obeticholic acid it’s over $200,000.

    However, over the past several months my doctor has been trying to get me 25mg of Obeticholic Acid through FDA’s Expanded Access (Compassion Use) program.

  • markph author
    2 years ago

    LJN452 is an investigation drug being tested in PBC, NASH and BAD/BAM. https://clinicaltrials.gov/ct2/results?cond=&term=Ljn452+&cntry=&state=&city=&dist=

    Even though the website on the above link says the phase II Clinical trial is open for BAD/BAM. Enrollment is closed and they’re about to wrap the study up. Now we’ll have to wait (my guess) a year to see if they move forward with a phase III trial. Hopefully they do move forward with it in BAD/BAM. Although, I’m sure Novartis’ main focus is to get it approved for NASH. Larger market, more severe condition. LJN452 is a non-bile acid FXR Agonist. According to Novartis, it’s 200-300 times more potent and should have a better safety profile relative to Obeticholic Acid. Obeticholic Acid is a semi-synthetic bile acid FXR Agonist. Although, as long as you don’t have severe hepatic impairment ( which we don’t) Obeticholic Acid shouldnt cause any serious side effects. Since Obeticholic Acid gets reabsorbed it can cause your skin to itch. I never noticed itching.

  • Chris Hall moderator
    2 years ago

    Hi markph,

    Thanks so much for submitting your story. You’ve been on quite the journey between the medications and doctors! I’m so glad you finally got some answers – you certainly did your research. I’m unfamiliar with the Obeticholic Acid and LJN452 drugs, but will definitely be researching them. Due to the restrictive nature of both medications, how is your symptom management going currently? Thanks again for sharing!

    Thanks,
    Chris, IrritableBowelSyndrome.net Team Member

  • Poll