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

Posted by jewill @jewill, Dec 6, 2016

I was dignosed with e p i. Exocrine pancreatic insuffency in 2015 after having a severe reaction to premarin estergen cream then 2 weeks later i had an even more sever reaction to an infusion of reclast it is a biphosphonates l am severly allergic to phosphates, dr did not check for that. i had diarrhea lost 20 lbs destroyed 90 % of my pancreas dr gave me creon 3600 2 with each meal low fat diet that is all the information i got from him did research on web for diet and supplments .need a dr in austin tx that knows more about e p i would apprecate any info on this thank you jewill

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howboy | @howboy | 4 days ago
In reply to @lisalucier "@howboy - Hi, and welcome to Mayo Clinic Connect. This is a great place to get..." + (show)
Profile picture for Lisa Lucier, Moderator @lisalucier

@howboy - Hi, and welcome to Mayo Clinic Connect. This is a great place to get practical information from people who are "boots on the ground." Glad to hear you've gotten useful information before from fellow patients.

The way you eat and how much time you spend in the gym is impressive. I usually get in about 50 minutes at the gym and then need to return to work.

I had to look up jook, as I'd not heard of it before. Will you share a bit about what it is and why it seems to instantly calm your stomach?

Here is some Mayo Clinic information about amylase/lipase/pancrelipase/protease - oral route (brand name - Creon) https://www.mayoclinic.org/drugs-supplements/amylase-lipase-pancrelipase-protease-oral-route/description/drg-20065293

You will note that rapid weight gain is listed as a less common side effect.

Will you share more about why you feel that amylase/lipase/pancrelipase/protease - oral route (brand name - Creon) is tricky to use?

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@lisalucier Thank you for the warm welcome. I've found- I still feel like I'm in a Creon learning curve-that regulating the Creon dose is an art, one that I haven't mastered. I occasionally still have digestive episodes (euphemistically speaking) that fall outside my understanding of what I may have eaten that may have caused the problem, or if it's a dosing issue. Was it hidden fat that tipped the scales, or too much protein at one sitting. Did I take too much Creon or not enough? I'm coming to the conclusion that it may never be 100%, and that I should keep aiming for 100% but be content with something lower.

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howboy | @howboy | 4 days ago
In reply to @dianehrdr "@howboy Hi! I am particularly interested in the fact that you (like me) have been eating..." + (show)
Profile picture for dianehrdr @dianehrdr

@howboy
Hi! I am particularly interested in the fact that you (like me) have been eating well, organic, etc for a long time. This usually indicates other wholesome lifestyle traits. I too, have had digestive issues for a long time leading to a period of malnutrition prior to the diagnosis of EPI.
I have been on Creon for over 2 years and continue to have digestive issues, although it has helped me tremendously.
I just wanted to mention my added diagnoses of leaky gut, food/additives/pesticide sensitivities (administered by wellness practitioner/nutritionist) and IBS in the hopes you may want to pursue further causes of your discomfort.
It is still difficult to manage and may further complicate your diet, supplementation and treatments, but may be worth it in the long run.
These diagnoses seem to go " hand in hand". Which came first is a mystery, but I think they are still missed by mainstream practitioners.

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@dianehrdr Hi Diane. You may want to read the reply I just made to Lisa Lucier about my Creon experience so far--it's been a few months. My doctor said that the fact that I eat healthfully is probably what kept me going, since only a small portion of the nutritional value of the food was digested by my stomach. I always looked great and had lots of energy but I was running on empty.

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howboy | @howboy | 4 days ago
In reply to @dianehrdr "@howboy Hi! I am particularly interested in the fact that you (like me) have been eating..." + (show)
Profile picture for dianehrdr @dianehrdr

@howboy
Hi! I am particularly interested in the fact that you (like me) have been eating well, organic, etc for a long time. This usually indicates other wholesome lifestyle traits. I too, have had digestive issues for a long time leading to a period of malnutrition prior to the diagnosis of EPI.
I have been on Creon for over 2 years and continue to have digestive issues, although it has helped me tremendously.
I just wanted to mention my added diagnoses of leaky gut, food/additives/pesticide sensitivities (administered by wellness practitioner/nutritionist) and IBS in the hopes you may want to pursue further causes of your discomfort.
It is still difficult to manage and may further complicate your diet, supplementation and treatments, but may be worth it in the long run.
These diagnoses seem to go " hand in hand". Which came first is a mystery, but I think they are still missed by mainstream practitioners.

Jump to this post

@dianehrdr Part 2, I realized that I didn't address the book question.
simply put it's a rice porridge similar to congee. There are a lot of recipes on line for it. I make it in my Insstantpot. The ratio is a little rice to a lot of water, and it cooks for a long time until the rice "explodes". The jook is starchy and smooth and miraculous for settling my stomach. I sometimes add chopped tomatoes to it at the start, or some chicken powder for added flavor. Sometimes some mushrooms. Sometimes I add some white meat chicken (at the start or finish). I think it's delicious and I eat an entire pot over the course of a day and it always works for settling my stomach.

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