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

Interested in more discussions like this? Go to the Digestive Health Support Group.

I take one tablet 30 minutes before a meal. The CVS version was the cheapest and worked just as good as IB Guard. I did try an "off-brand" on sale, and had horrible issues with extreme flatulence and diarrhea until I went back to the CVS version. They can have different ingredients, so go figure.

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Profile picture for dianehrdr @dianehrdr

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!

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I have EPI also and my GI dr prescribed Pertze high strength Digestive Enzymes for me to take with each meal. They are as close to human digestive enzymes as can get. Ask your GI dr to do this for you. I also take 1 Hydrochloric Acid tablet in the middle of each meal. We must have it to digest protein but also to kill any germs that get into the stomach when we swallow or eat a food that has bad organisms. Hope this guides you.

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

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Profile picture for cjval52 @cjval52

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

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Creon (or like substitute) is absolutely essential for getting bowel movements back to normal.
It seems many of us still have issues off and on or in some cases continuously, but the fatty stool, weird colors, diarrhea has subsided or been eliminated. It is still recommended to consume a low fat and highly nutritious diet with supplements.
Unfortunately, many with EPI also suffer from other digestive ailments like SIBO due to decreased digestion, and IBS, leaky gut and anything else that may have even contributed to the EPI diagnosis.

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Profile picture for jewill @jewill

<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>

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@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.

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Profile picture for Kanaaz Pereira, Connect Moderator @kanaazpereira

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?

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@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

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Profile picture for mercellort @mercellort

@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

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Welcome Mercedes @mercellort, I don't have any experience but from what I've read because SpectraZyme is a nutritional supplement you need to work with a doctor or registered dietician to determine the correct dosage. If you haven't already seen it, you might find this information helpful - https://www.identifyepi.com/epi-treatment.

You might also want to scan through the other discussions on EPI to learn what others have shared. Here's a list of the different discussions on EPI - https://connect.mayoclinic.org/search/discussions/?search=EPI

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Profile picture for howboy @howboy

@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.

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@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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Profile picture for howboy @howboy

@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.

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@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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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?

Jump to this post

@lisalucier

The first time I tried Creon, after a diagnose of atrophic pancrea and many years of having GI problems, my doctor prescribe a high dosage of Creon. I felt great for a few days, then I got a terrible pain underneath my left rib, I couln't walk strigh, and I had blood in my stool. I quit taking it and the symptoms went away.

Besides the spectraZyme I take PURE ENCAPSULATIONS Pancreatic Enzyme Formula, so far very good. Dosage: lipase 17,500 USP units, protease 110,000 USP units, amylase 120,000 USP units.
I take the SpectraZime with breakfast, I feel I need less support, the Pure Enc. for lunch, which is a big meal for me, and SpectraZime for dinner again.

Creon is more than tricky for me, I am afraid of it

Thank you for your interest

Mercedes

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