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

@venture
I appreciate all the feedback. I recently adjusted my dose to 2 36000 pills with each meal and 1 with snack. Looks like I should probably up it even more. I plan on doing that gradually. Not sure what happens if it turns out to be too much—but starting to feel confident that I can get my weight issue in order with increasing my dosage.

When a prescriber writes the Rx for a pancrealipase, the number of capsules for meals and snack s is an estimate. It is the responsibility of the patient to optimize dosage for each meal based on the quantities of carbohydrates, protein and fat in each meal. To make optimization easier, use the on-line dosing calculator at pertcalculator.org. The calculator takes into account your pancrealipase concentration, weight and as the menu is being built, it keeps track of the amount of carbohydrates, protein and fat for that specific meal in its calculation.

For better performance in digesting food, take the first capsule with the meal. When more capsules are required, stagger the taking of capsules. The one exception is if consuming a meal within 15 minutes, you can “front load” the dosage of consuming the capsules at the start of the meal. Most patients eat slower and stagger the taking of capsules.

Take the capsule with enough water to swallow. Enzymes work best at 98.6°F (37°C) under alkaline pH. Limit iced or very hot drinks and acidic drinks, and limit liquids during the meal to prevent dilution of the enzymes. Drink the larger quantities of beverages between meals. By following these suggestions which come from representatives of Abbvie and Nestlé that make Creon and Zenpep respectively as well as Registered Dietitians, it will provide the best performance.

@stageivsurvivor … do not let the medicine get over 80F in storage… the bottle says 77F. But 80 is a round number to remember. I had to throw away many bottles delivered mail order in the summer time. The shipping pharmacy said it would just happen again and basically I had to live on juice and fresh fruit for weeks. Always get it delivered “next day”. And be home when it arrives. Big problem is the in Transit time sitting in a hot vehicle which kills the enzymes. I monitor my glucose. If my glucose doesn’t increase with food and meds… the meds are dead! AND they recommend NOT to refrigerate the meds.

<p>I was diagnosed with endocrine pancreatic insufficiency EPI after having a reaction to estrogen cream and 2weeks later a reaction to reclast infusion a BISPHOSPHONATE.dr didn't check my chart for allergy to phosphates nor tell me to have any invasive dental work done first .i had diarrhea for over 200 days lost from 130 to 103 lbs .my teeth have started to break off i have a lot of muscle loss i went from dr to dr none knew what i had finally a dr ran fecal test and started me on creon and told to go on a low fat diet.i did research diet ,timing for creon and food ,supplements,exercise.i put my food in blender to get more food in me it is hard to chew.i have done organic for 40 years .I would like to find a Dr in austin tx that knows more about EPI .supplements ,creon and organic food and keeping stress down works I still work but i am 78 so i wont be able to do that much longer. I would love to hear from any one with any informed on EPI or malabsorption.</p>

Welcome to Connect @jewill, and thank you for sharing your history,

EPI can go undetected and be so frustrating, especially since it can occur due to both pancreatic and non pancreatic causes, and the symptoms are very similar to that of other GI disease.
After doing some research, I found a detailed journal article on EPI, here: http://bit.ly/2hgkNAo; and I'm tagging older members @rickzaner, @codelue, @inhiscare2, with the hope that they will join in the conversation, as they have some experience with the drug Creon.

Also, @mkenn, @saucy, @concernedmtnmom, since you have all discussed malabsorption, do you have any suggestions for jewill?

@jewill, do you take any vitamin supplements in addition to the Creon? Have you been diagnosed with any other conditions that could be linked to EPI?

Gman007 Thank you for your reply and the information on supplements.I take all of these and a lot of antioxIdants alphs lipoic acid, N A C,acetyl.-l-cartinine ,vit a ,e selenium . A lot of the ones i take help with brain function.I like to be able to think clearly,and at almost 80 that takes more working at.I agree with bobinthevillages about the lack of experience any GI Dr has.here is a web sight on dosing of creon wwwcfhcp/dosingguide. I think that is the one that says Too high dose of creon is associated with FIBROSING COLONOPATHY. i have less pain if i have smaller meals and control my stress.I am going to try to contact the collage here in Austin to try to find a Dr with more experience treating EPI any information on that would be good