Living with Exocrine Pancreatic Insufficiency: Share Your Experience

I got diagnosed with EPI in Nov 2021. I had a lot of trouble getting regulated on the CREON 36,000. I went to a gastro specific nutritionist who helped me better understand what the PERT is really helping and how to manage # of pills per grams of fat. I still have a lot of nausea and every once in a while a really bad stomach day, but since learning more about the meds. for every 7g of fat your body needs 16,000 units of lipase. my pills have 36,000 of lipase so i do grams of fat/7x16000/36000 to determine the number of pills. after a little while it gets much easier to estimate without all the math. it’s been very hard post diagnosis and am hoping to share any helpful info and hear any interesting things you guys learn!

I continually am fighting my weight. Up and down. I go about 4 to 5 days , no major issues, as long as I’m taking my enzymes, especially with higher fats. Then, I’m down for 2 to 3 days, cause something I ate, bile reflux is kicking my butt. I’m new to this Epi. Doing lots of research.

Malabsorption and weight loss has been pretty significant. I tried the enzymes but had a lot of trouble getting the right dose and had all sorts of side effects....now I do a natural version of them. I've had trouble staying nourished so all the problems related to that...brain fog, low blood sugar symptoms, dysautonomia, electrolyte imbalances etc...