Exocrine Pancreatic Insufficiency

Any one here had a bile duct issue that causes their EPI?

First you need to see a nutritionist who specializes/has experience with this issue. There is a lot of information on the internet. Your pancreas is not producing sufficient enzymes to digest the food in your stomach when eat, thus the Zen pep/Creon/Panarese, etc. In addition to the compromised digestion, which causes malabsorption issues, you possibly face nutrient deficiencies. My personal instructions were: include, daily, vitamins K/A/D/Coq10/E/B complex/Good multi. Most of these are absorbed better with some kind of oil in your meal. Even taking all these, I still had a ferritin (part of your iron) and B2 deficiency, which manifested in my tongue and it has taken three months of supplements for those to clear, not to mention the medical tests to rule out oral disease of some kind. The iron deficiency developed due to not eating beef or pork. You are advised not to eat pork or beef, as they are harder to digest than chicken and fish and can cause extra stress. I eat a lot of vegetables, dried beans, grains, avocado. Have found that raw vegetables. slaw, salad do not digest well for me, so I only eat cooked foods, or experience pancreas discomfort while the raw items digest. Eliminate processed foods - fast food, chips, candy cakes, canned soups, frozen foods, sugar, as little processed as possible. These have little nutritional value and are harder to digest. No fried foods. I use Daves Killer and Ezekial breads, as they (especially Ezekial) have more nutritional value (for store bought bread) than most of the others. If you aren't familiar with Ezekial it is found in the frozen section, due to lack of preservatives and I thaw, and keep, it in the refrigerator. I use Vegenaise instead of mayo, Violife plant butter and cook with only olive oil. Eat a lot of tune and salmon salad and have a vegetable soup I make and freeze, so I always have something on hand. Have a crustless quiche each day for breakfast, with broccoli, peppers and onions

All of this information is trial and error for ME and working with a nutritionist. I am also pre-diabetic, so my diet is a little more restricted on the carb side. This diagnosis can be overwhelming at first, as they all can, but when you start working with it, you will figure out what works best for you. Good luck and find a good nutritionist and read medical articles about this disorder.

Has anyone heard of ampullary stenosis? I had an MRCP looking for strictures in my biliary system that might be causing my EPI. They are calling it possible ampullary stenosis. Seems like the same thing as a stricture. Haven’t seen my GI Doc yet, but there seems to be a non-invasive surgical procedure that can possibly fix it.

Thank you for the information regarding information on FB!

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.

Hi I just joined I was diagnosed with EPI 10 years ago I took the Zenpep but it was super expensive.I found it did not really help me and stopped.
Now I am 65 and start to have heat indigestion really severe and pale loose stool.
Trying to stay healthy with green red and orange veggies and fruit .No bread or grain.
Cheese dairy chicken fish eggs mostly.
2 good days a week 2 bad ones and 3 in between .
Wonder if I should give the enzymes another go