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New to exocrine pancreatic insufficiency (EPI): What helps?
Digestive Health | Last Active: 5 days ago | Replies (173)Comment receiving replies
@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.
Replies to "@jewill Hi, I just signed up for this community to see if I can get practical..."
@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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@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?