New to exocrine pancreatic insufficiency (EPI): What helps?

@jewill Hi, I just signed up for this community to see if I can get practical info from people who have EPI and are "boots on the ground". Some of the most useful info I've gotten concerning the myriad of health problems I have has been from patients, not doctors. I'm 74, I've eaten organically since 1955. Look younger than my years, I go to the gym to workout for 3 hours every day. A large part of my life has been devoted to eating healthy food; I've never had takeout, I cook all of my food-even though I live in a large city where take-out reigns supreme. Years of digestive problems; years of doctors shrugging. Finally hooked up with really smart doctors who tested me for pancreatic enzymes. To my surprise, the test said I was severely malnourished! Me? How is that possible? I spend over $100 per week on healthy fresh organic groceries just feeding me! I was relieved to finally have a reason for the digestive problems that got better with time when my Dr. started me on Creon -it's a tricky drug to use. I try my hardest to be smart about what I eat and dosing, but some days are still more successful than others. Now I'm unduly focused on my bowels--a tradeoff but better than the constant loud stomach grumbling and diarrhea. I'm hoping that my digestion will continue to get better and better with time as I feel that even with Creon, my digestive tract has to normalize and that will take time. I make jook fairly often with instantly calms my stomach, and it's so easy to eat, no chewing. I make a lot of homemade soups with vegetables and bones because I think it's healthy and easy to make. One side effect of taking Creon is that I"m gaining weight like mad now that I'm absorbing my digested food.

Creon (or like substitute) is absolutely essential for getting bowel movements back to normal.
It seems many of us still have issues off and on or in some cases continuously, but the fatty stool, weird colors, diarrhea has subsided or been eliminated. It is still recommended to consume a low fat and highly nutritious diet with supplements.
Unfortunately, many with EPI also suffer from other digestive ailments like SIBO due to decreased digestion, and IBS, leaky gut and anything else that may have even contributed to the EPI diagnosis.

So did you have any side effects from the creon? Did you have typical fatty stools prior to starting it??

I have EPI also and my GI dr prescribed Pertze high strength Digestive Enzymes for me to take with each meal. They are as close to human digestive enzymes as can get. Ask your GI dr to do this for you. I also take 1 Hydrochloric Acid tablet in the middle of each meal. We must have it to digest protein but also to kill any germs that get into the stomach when we swallow or eat a food that has bad organisms. Hope this guides you.

I take one tablet 30 minutes before a meal. The CVS version was the cheapest and worked just as good as IB Guard. I did try an "off-brand" on sale, and had horrible issues with extreme flatulence and diarrhea until I went back to the CVS version. They can have different ingredients, so go figure.

A bariatric dietition is who prescribed the Creon. But I may need a different dose. I have been thinking about a low Fodmap diet, maybe I will try it. I do drink peppermint tea but have not tried peppermint oil—how much do you take? I rely a lot on immodium.

Perhaps you need a different dosage? A consultation with a dietitian? I take peppermint oil (sold at CVS as Intestinal Defense...the CVS brand). A low FODMAP diet also did wonders for that for me. There are still issues with IBS-D symptoms but it is better. Good luck.

I just wanted to add that despite taking Creon for several months I still have IBS-D with no discernible change. I have not been retested for the pancreatic insufficiency since starting the Creon.

Also my Medicare Part D plan is Wellcare Value Script, which I chose after listing all of my meds and comparing plans.

Your input is very interesting to me. I have been diagnosed with EPI, previously SIBO, Ileocecal valve issues and IBS after Hiatal Hernia surgery.
I have been the thinking of going to Mayo Clinic as well, and wonder if these are all "live with it" issues. I have been on Creon, now on Zenpep, still having diarrhea issues, for over 2 years. Suggestions , anyone? Thank you.