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.

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

mari | @mari | Nov 6, 2024
In reply to @karmacoolee "Hi I just joined I was diagnosed with EPI 10 years ago I took the Zenpep..." + (show)
@karmacoolee

Hi I just joined I was diagnosed with EPI 10 years ago I took the Zenpep but it was super expensive.I found it did not really help me and stopped.
Now I am 65 and start to have heat indigestion really severe and pale loose stool.
Trying to stay healthy with green red and orange veggies and fruit .No bread or grain.
Cheese dairy chicken fish eggs mostly.
2 good days a week 2 bad ones and 3 in between .
Wonder if I should give the enzymes another go

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Vital
3. Take bite of food. Then Viral
Then eat meal
It saved me. Three a day

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geegeebabe | @geegeebabe | Nov 9, 2024
In reply to @jlmp "Following. After googling (my only source of information) I think Creon and Zenpep are pretty much..." + (show)
@jlmp

Following. After googling (my only source of information) I think Creon and Zenpep are pretty much the same thing. The capsules are so expensive I find myself not eating when I’m hungry in order to save the capsules. Not sure if I need to take one or two with every single thing that goes in my mouth. Fruit? Liquids or juices? Starches?

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First, did your doctor tell you how much to take? You should be taking enzymes with every meal and snack. Take one pill after your first bite of food, then space them out with the rest of your meal. Most doctors say to take one with snacks. It takes time to get the dosage right, so if you are still have no relief after a few weeks, let your doctor know. There is a great support group on Facebook, they have files that give more accurate info compared to anything you can search for online. Most Gi doctors don’t give patients much information, and we struggle with what we should be doing. Remember, the enzymes are a replacement for what your body no longer makes, not a medicine that will cure this illness.

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geegeebabe | @geegeebabe | Nov 9, 2024
In reply to @merveaksoy "Same here. Even my husband tells me to have some wine because he wants to drink..." + (show)
@merveaksoy

Same here. Even my husband tells me to have some wine because he wants to drink with me. Friends arent much different either. They insist occassional cheats wont hurt.

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Alcohol is the last thing you should be drinking. One of the groups of people that end up with EPI, are alcoholics. Maybe a glass of wine one a year may be ok, but be aware of the consequences. Keep in mind, that this illness is different for everyone, what food I have trouble with, you may not. However, excess fat in our food is a trigger for everyone. Other things can upset your gut randomly. What is okay one time may not be ok the next. It’s trial and error. For those of you afraid to eat, don’t be. The enzymes will help. Yes they are expensive, but you can see what offers the manufacturer gives you to help override the costs.

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mari | @mari | Nov 10, 2024
In reply to @jlmp "Diagnosed one week ago and SO many questions. Prescribed very expensive Zenpep. Can I eat as..." + (show)
@jlmp

Diagnosed one week ago and SO many questions. Prescribed very expensive Zenpep. Can I eat as normal while taking these capsules? Need info on dosing, foods I can eat without dosing, etc. Doctor no help with this. He just says take one capsule before a snack and two before a meal.

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Is there Any research going on about Pancreatic Inefficiency?

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creondave | @creondave | Nov 10, 2024
In reply to @jlmp "Diagnosed one week ago and SO many questions. Prescribed very expensive Zenpep. Can I eat as..." + (show)
@jlmp

Diagnosed one week ago and SO many questions. Prescribed very expensive Zenpep. Can I eat as normal while taking these capsules? Need info on dosing, foods I can eat without dosing, etc. Doctor no help with this. He just says take one capsule before a snack and two before a meal.

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I have EPI, I am not sure I would call going on a FODMAP diet a mistake; within a week I was significantly better. I randomly get better, and worse with all symptoms that range from severe constipation and suddenly having sudden uncontrollable diarrhea. It is a pretty extreme thing to deal with and disrupts sleep, work, rest, you name it. But the FODMAP, rosemary oil, and Creon helped.

On Creon, and it seems to work, taking Rosemary oil before each meal (CVS in America seems to have the cheapest, I have found). Also, on D3 and a B multiple vitamin. Taking Miralax every other day helps reduce issues of constipation, which in turn leads to less severe issues of bowel leakage.

EPI seems to be very different for each person. I have found it to be hellish but there are also periods of time where life is almost normal.

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dkochenour | @dkochenour | Nov 17, 2024
In reply to @robincat99 "This is an excellent post. I was recently diagnosed with EPI and meeting with a nutritionist..." + (show)
@robincat99

This is an excellent post. I was recently diagnosed with EPI and meeting with a nutritionist who understands this condition was essential. Most nutritionists deal with diabetes and weight problems. I also have Celiac Disease - CD has a much higher rate of EPI than the general population.

Most of the information I have gained about this condition has been from reading medical journals (my background is in traumatic brain injury and vestibular dysfunction - so I am fortunate and have access to medical journals). One thing I found out - which none of my doctors told me is that the medication for Hasimoto's thyroid condition interferes with L-Thyroxine. I changed the timing of my L-thyroxine to late at night - 4 hours after eating.

It is interesting to see how many people on this thread note that their physicians were not much help at all. I found the same thing - and it has been extremely frustrating.

For many people, reading medical articles - if you are not accustomed to these types of articles - can be intimidating. But it really is essential to understanding EPI - because we cannot rely on the medical community for our own health needs.

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I use Armour Thyroid for Hasimoto's I wonder if it will affect will be affected.

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rka19 | @rka19 | Nov 20, 2024
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 | Nov 21, 2024
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 | Nov 21, 2024
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 | Nov 21, 2024
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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