Does anyone have EPI (Exocrine Pancreatic Insufficiency)?

I also had and have such a positive experience with Pure Pancreatin Enzymes. I take them religiously when I eat. I also brought them to my Gastro Doc. and she said they were fine to replace the Creon. They actually seem to work better for my body. My EPI has given me no problems. Occasionally I overdue, but it clears up when I go back to bland foods for a day and keep taking my enzymes. I also thought i had IBS...nope! These enzymes seemed to clear up any stomach, digestive issues.

I have had EPI for 1 1/2 years and it has taken this long for me to figure this condition out with pretty much no help from my 2 Gastroenterologists
other than getting a prescription for Creon. Googling was my main source of information. A couple months ago I came up with the idea to search for an
EPI diet Cookbook. Since my insurance only covers a dietician if you have Diabetes I was in the dark trying to figure out nutritional foods to eat to maintain my weight and also may cause fewer bouts of diarrhea etc..
I found 3 small books on Amazon all written by doctors. They had such an abundance of information about EPI and I feel they should be recommended when a patient is diagnosed just to get them started.

EPI Diet Cookbook: for Beginners, Dr. Ramous Beaver
A Beginners Guide to Exocrine Pancreatic Insufficiency Cooking, Dr. Sarah James
The Essential EPI Cookbook for Newly Diagnosed 2024, Dr. Sarah Matthews

I hoped this information is helpful to someone.

THANK YOU SO MUCH! These are exactly what I've been looking for. When I complained to my gastro about not having been provided any info about EPI, he looked at me like I was a Martian. Never could guide me to anything. Is the condition just that new, that not much has been provided, or is it just that rare, that there aren't enough people interested?

Creon 36000 units. I take 3 or 4 with each meal. I have been diagnosed with EPI. Enzymes don’t seem to help me at all. Food usually goes straight through me within 30 -40 minutes. The worst part is Bloating and Gas at night because I can’t go to sleep. Not getting much help from Gastro Doc. except take the enzymes. Frustrating!

I had to go on a low Fodmap diet to get relief from bloating and gas. It helps a great deal, or so it seems to help for now.

The other thing that helped was taking "CVS Intestinal Defense" Peppermint oil 30 minutes before each meal. There are more expensive brands but I just got the generic one; it works fine.

I have been diagnosed with EPI. I have had ongoing problems for 2-3 years now. Creon is only a hit and miss thing to keep it under control. My life is no longer my own because I can't plan anything. Could getting all the Covid vaccines and boosters, as recommended have caused this? I have been through tons of tests and other than being diagnosed with EPI, via stool samples (twice now). I have had to quit working, missed funerals, graduations, outings with friends...you name it.

I am sorry your EPI has had such a negative impact on your life! I am not aware of any link to Covid vaccines, but there’s so much we don’t know yet about the effects of both Coving infections and vaccination.
I am wondering if your lack of response to Creon is inadequate dosing. My understanding is that some people can require up to 15 caps a day: 3 with each meal and rwo with each snack. I am lucky in that 1 cap for lunch and dinner each controls my symptoms fairly well. Have you been checked for bile acid malabsorption? It’s possible that anoproblem coexists causing the diarrhea. It often occurs in people who have had gallbladder removed. The National pancreas foundation has good information on EPI and the dietary restrictions that help. I hope you get better control so your quality of life improves! It’s a learning process, sometimes lengthy, to manage this condition. A good dietitian might help as well. Hang in there and keep reading posts on EPI on this site. Experienced people with valuable information!

I had my gallbladder removed a long time ago. Bile acid malabsorption, seems to describe a lot of what I am going through. I have doubled my dose of Creon as of yesterday. This morning has been awful. Watery diarrhea, green and metallic in smell. Continued discomfort on right side below rib cage. I am beyond frustrated. This is so not living. Does anyone know if Cleveland Clinic has a digestive department?

I’m sure they do. You definitely need a good GI consult at a specialty level clinic or university hospital clinic.

How much Creon do you take, per meal? My prescription is two capsules, 36,000, per meal and one, per snack.
You definitely need to visit another gastro.