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Pancreatic insufficiency ..No cause?

Pancreatic Disorders | Last Active: 5 days ago | Replies (57)

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This is all fascinating. I began having episodes of explosive diarrhea, as many as 20 times per day, in 2017. I was 57 at the time. Finally, in 2024, I was diagnosed with EPI. Absolutely no underlying cause identified. My doctor prescribed Creon, but it was $2000 per month with my insurance. I take Zen Pep, which my insurance pays for 100%. I was taking 8 25,000 pills per day and doing okay, until it just stopped working. Starting about 2 months ago, every single thing I eat would go right through me. My doctor thought I might have cyclaspora. I did a stool test. No parasite but, my elastane is 24. Frankly, that’s the lowest number I’ve seen on here. My doctor tells me my pancreas is essentially not functioning. I keep upping my meds on my own, as my doctor is out of town for a month. I am up to taking 16 25,000 pills per day. The diarrhea has slowed, but not stopped. My husband is convinced I have been misdiagnosed. The one thing I can tell from reading this, is that every single person has a different reaction, different symptoms, etc. As you all know, it is incredibly frustrating. There is some comfort in knowing I am not alone. If anyone knows a medical group on top of this, I missed it. Please repost. Thank you!

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Replies to "This is all fascinating. I began having episodes of explosive diarrhea, as many as 20 times..."

@sunterrace Welcome to Mayo Clinic Connect! You are increasing your meds on your own which is not really safe but I can understand since your doctor is out of town for a month. Does he have another doctor in his office that you can call and get an appointment? Or have you thought about going to a comprehensive medical center? They are usually located near large cities. Or a university medical center. The doctors are frequently involved in some research so know more about these “new-ish” diseases. Just call one and ask to be connected with the gastroenterology department. Explain your problem and ask if you could get an appointment. Even if it is a drive your health is worth it. My husband did just that. He called the university medical center about 1 hour away and explained that I was in the ER and that no one had a clue. We were able to get an appointment and the university hospital was able to tell the ER docs in the local hospital how to treat me until i could get to the university.