1. < Digestive Health

Does anyone have EPI (Exocrine Pancreatic Insufficiency)?

Posted by slkanowitz @slkanowitz, Oct 15, 2023

The prescription enzyme I take is 368.00 a month copay. Without insurance it is over 2000.00 a month! I’m looking for an affordable over the counter pancreatic enzyme with comparable lipase dosage of 40,000 units. I would appreciate any suggestions, as the diarrhea caused by this condition is intolerable.

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darb | @darb | Nov 5 7:58am
In reply to @slkanowitz "I am sorry your EPI has had such a negative impact on your life! I am..." + (show)
@slkanowitz

I am sorry your EPI has had such a negative impact on your life! I am not aware of any link to Covid vaccines, but there’s so much we don’t know yet about the effects of both Coving infections and vaccination.
I am wondering if your lack of response to Creon is inadequate dosing. My understanding is that some people can require up to 15 caps a day: 3 with each meal and rwo with each snack. I am lucky in that 1 cap for lunch and dinner each controls my symptoms fairly well. Have you been checked for bile acid malabsorption? It’s possible that anoproblem coexists causing the diarrhea. It often occurs in people who have had gallbladder removed. The National pancreas foundation has good information on EPI and the dietary restrictions that help. I hope you get better control so your quality of life improves! It’s a learning process, sometimes lengthy, to manage this condition. A good dietitian might help as well. Hang in there and keep reading posts on EPI on this site. Experienced people with valuable information!

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Along with an increase in Creon, I have been put on Colestipol 1M/ 2 tablets twice daily. THIS seems to be helping immensely. It's been suggested that I have EPI with BAM. I have had 12 days straight with no diarrhea. However it is still too early to determine if this is the magic combination. Fingers crossed. I am still having significant discomfort in the right upper quadrant (under rib cage) that radiates into back. Will keep everyone in this forum posted.

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1 reply
rka19 | @rka19 | Nov 5 8:27am
In reply to @slkanowitz "The Vital nutrient pancreatic enzymes do work.! Both my sister and I have EPI and take..." + (show)
@slkanowitz

The Vital nutrient pancreatic enzymes do work.! Both my sister and I have EPI and take these successfully. Just be sure to check the back label for lipase dose of around 36500 units. Amazon has these. I take 2-3 a day with meals but you can take more if needed. Staying away from fried and fatty foods helps. It took me a long time to get this figured out. You will feel better! Hang in there. 😀

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Yes we will. Canada only has 25000units. Still waiting on ABBVIE to make a decision.
Much success
Becky

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volleyballfan | @volleyballfan | Nov 5 10:33am

Ihave been diagnosed with both colitis and pancreatic insufficiency. Cannot figure out what I should snd should not eat. Any help would be appreciated

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1 reply
myrrh739 | @myrrh739 | Nov 5 4:06pm

I have EPI and I was prescribed Creon an enzyme to digest the food and it’s good, I’m feeling much better, my digestive system is working much faster than before.

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rka19 | @rka19 | 6 days ago
In reply to @slkanowitz "The Vital nutrient pancreatic enzymes do work.! Both my sister and I have EPI and take..." + (show)
@slkanowitz

The Vital nutrient pancreatic enzymes do work.! Both my sister and I have EPI and take these successfully. Just be sure to check the back label for lipase dose of around 36500 units. Amazon has these. I take 2-3 a day with meals but you can take more if needed. Staying away from fried and fatty foods helps. It took me a long time to get this figured out. You will feel better! Hang in there. 😀

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Appreciate your shared info. I continue to have diarrhea, with very few solid stool movements. I’m still afraid to leave the house
Rebecca

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2 replies
merveaksoy | @merveaksoy | 6 days ago
In reply to @volleyballfan "Ihave been diagnosed with both colitis and pancreatic insufficiency. Cannot figure out what I should snd..." + (show)
@volleyballfan

Ihave been diagnosed with both colitis and pancreatic insufficiency. Cannot figure out what I should snd should not eat. Any help would be appreciated

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My understanding is that everyone differs when it comes to food they can tolerate or not tolerate but my doctor has suggested me to avoid anything which could exhaust my pancreas such as alcohol, smoking, all fried food, added sugars and non-complex carbs. I was also told that red meat is a possible carcinogen, especially toxic to pancreas so I try to build my diet around lean protein, veggies, legumes and low sugar fruits. Hope that helps.

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1 reply
volleyballfan | @volleyballfan | 5 days ago
In reply to @merveaksoy "My understanding is that everyone differs when it comes to food they can tolerate or not..." + (show)
@merveaksoy

My understanding is that everyone differs when it comes to food they can tolerate or not tolerate but my doctor has suggested me to avoid anything which could exhaust my pancreas such as alcohol, smoking, all fried food, added sugars and non-complex carbs. I was also told that red meat is a possible carcinogen, especially toxic to pancreas so I try to build my diet around lean protein, veggies, legumes and low sugar fruits. Hope that helps.

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Thank you, the info is helpful
. My problem is that I have been diagnosed with colitis and pancreatic insufficiency. Have been put on 1,400 calorie diet, fat under 30 grams, fiber under 24 grams, protein under 68 grams. Weight is 121 and falling. Way too thin. Can’t figure out how to calculate what I am eating for dinner.

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2 replies
merveaksoy | @merveaksoy | 5 days ago
In reply to @volleyballfan "Thank you, the info is helpful . My problem is that I have been diagnosed with..." + (show)
@volleyballfan

Thank you, the info is helpful
. My problem is that I have been diagnosed with colitis and pancreatic insufficiency. Have been put on 1,400 calorie diet, fat under 30 grams, fiber under 24 grams, protein under 68 grams. Weight is 121 and falling. Way too thin. Can’t figure out how to calculate what I am eating for dinner.

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EPİ causes weight loss because the body cannot absorb all the nutrients in food. When we start taking enzymes it becomes easier body to digest fats and carbs. I gained most of the weight I ve lost but it took time. Have seen a dietician?

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karmacoolee | @karmacoolee | 5 days ago
In reply to @rka19 "Appreciate your shared info. I continue to have diarrhea, with very few solid stool movements. I’m..." + (show)
@rka19

Appreciate your shared info. I continue to have diarrhea, with very few solid stool movements. I’m still afraid to leave the house
Rebecca

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I made rice pudding for several days and take it with enzymes coconut sugar and little acacia honey.
It bulks up the loose stool and make me feel way better as I lost 8 pounds in 3 weeks
Keep your head up

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cheryl46 | @cheryl46 | 5 days ago
In reply to @volleyballfan "Thank you, the info is helpful . My problem is that I have been diagnosed with..." + (show)
@volleyballfan

Thank you, the info is helpful
. My problem is that I have been diagnosed with colitis and pancreatic insufficiency. Have been put on 1,400 calorie diet, fat under 30 grams, fiber under 24 grams, protein under 68 grams. Weight is 121 and falling. Way too thin. Can’t figure out how to calculate what I am eating for dinner.

Jump to this post

Have you tried Colestid or any bile salt medicine? These are much cheaper and they help with absorption.
I was diagnosed with pancreatic insufficiency post Covid and lost 60lb's in 2 1/2 weeks. Was taking pancreatic enzymes 4 pills 4 times a day with not a lot of results. Started Colestid and it has helped quite a bit.
I was going 10-15 times a day to now 3-5 times.
Ask your doctor if they think it might help.

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