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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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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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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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