Creon not working, doctors out of ideas — Life with chronic pancreatitis & EPI at 21

Hey everyone, i am 21 type shit

I want to share my experience with chronic pancreatitis and exocrine pancreatic insufficiency (EPI) and see if anyone else is going through something similar.

I’ve been taking Creon at the highest dose possible (8 pills per meal) and using acid blockers, but it still doesn’t seem to work for me. I’ve done tons of tests — SIBO, gut exams, liver function, blood tests — and everything looks normal. Still, I have daily greasy, fatty stools and feel increasingly exhausted. It’s frustrating because this situation is rare, and many doctors don’t know how to help.

One theory is that I might have a bile salt deficiency. Without enough healthy bile, the enzymes in Creon can’t activate properly. I haven’t tried bile salt supplements yet, but I’m gonna try it.

Also, how fast you poop really matters. If you’re going 3 to 4 times a day, Creon never gets enough time to do its job. I’ve been trying a low-FODMAP diet to slow down digestion and reduce symptoms.

Giving my gut rest is another key part. Using predigested nutrition like Elemental 028 helps calm and rebuild my digestive system without enzymes needed, so hopefully Creon can work better over time.

I’ve also added easily digestible fibers like soluble acacia fiber to support gut health, and L-glutamine to help repair and strengthen the gut lining. This has been helpful so far almost no pain anymore and i started my first week

I’m sharing this to connect with others who might be facing the same challenges. If you have any advice or similar experiences, I’d really appreciate hearing from you.

Thanks for reading!

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