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

I have been diagnosed with exocrine pancreatic insufficiency, leaky gut, IBS, SIBO and although I have been to multiple doctors, wellness practitioners, follow the fodmap diet and have eliminated many foods after food sensitivity testing, have ongoing abdominal pain, diarrhea, constipation and overall poor health. I also take many supplements and have always enjoyed a healthy diet.
I guess I'm looking for a new direction, or perhaps the results of more recent research...or maybe, a miracle!

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

<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?

@kanaazpereira
My name is Mercedes Wise.
I have been diagnose with pancreatic atrophy with cysts (12). That is the cause of my low pancreatic elastace.

I have tried Creon and I can not tolerate it. So I found SpectraZyme from Metagenics and it works for me. It has been hard to calculate how much to take, I use different doses for each meal, depending on what I eat.
I will like to know more about this subject

Regards

Mercedes

@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.

@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.

@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?