Exocrine Pancreatic Insufficiency

Posted by jlmp @jlmp, Dec 24, 2023

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.

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

You may find the YouTube Video by Dr Steven Freedman, Professor of Medicine, at the Harvard Medical School helpful concerning how to determine the dosage rate for the EPI enzymes. The title of the tutorial is "Dosing Pancreatic Enzymes for Adults".

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EPI takes a while to get used to and doses etc figured out. I suggest you keep a journal of diet and dose of enzymes initially. A low fat diet helps a lot. Amazon has pancreatic enzymes that are almost exactly the same as the Rx but much cheaper. The lipase dose is what counts. Rx = 40000 units
Vital Care OTC=36500 units
A negligible difference. Be sure to read the fine print on label as there are different doses. I take one capsule with lunch and dinner but know others take more. It’s trial and error at first. Good luck getting your symptoms under control!

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@slkanowitz

EPI takes a while to get used to and doses etc figured out. I suggest you keep a journal of diet and dose of enzymes initially. A low fat diet helps a lot. Amazon has pancreatic enzymes that are almost exactly the same as the Rx but much cheaper. The lipase dose is what counts. Rx = 40000 units
Vital Care OTC=36500 units
A negligible difference. Be sure to read the fine print on label as there are different doses. I take one capsule with lunch and dinner but know others take more. It’s trial and error at first. Good luck getting your symptoms under control!

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Did you take the poop test that gives current enzyme levels? Mine was 129 and I take 36,000 with each meal. Thanks for the info; I'm going to ask my gastro about this, as prescription replacements are very expensive.

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@penelope52

Did you take the poop test that gives current enzyme levels? Mine was 129 and I take 36,000 with each meal. Thanks for the info; I'm going to ask my gastro about this, as prescription replacements are very expensive.

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I did have the poop test.Mine was 31.5. I fried a bigger dose but ended up with a bowel obstruction. I have gastroparesis so I take miralax ( 2 scoops 2x/day which worked until I started with Creon ).I have liquid diarrhea every day sometimes 10 times but I’ve gained about 20 lbs. since I began Creon. Anyone have that problem?

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@shaylyn4

I did have the poop test.Mine was 31.5. I fried a bigger dose but ended up with a bowel obstruction. I have gastroparesis so I take miralax ( 2 scoops 2x/day which worked until I started with Creon ).I have liquid diarrhea every day sometimes 10 times but I’ve gained about 20 lbs. since I began Creon. Anyone have that problem?

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I did gain weight on Creon, but had lost so much weight prior that it was normal to get it back, and it did cut down on gas, flatulence, and diarrhea. What then happened was extreme constipation that could occasionally result in minor aches in the groin, so it was pretty bad. Sometimes I can go two weeks without diarrhea, then may have it 12 times in 12 hours, and is impossible to control, as it is like pure water. Then gradually I go back to normal again after a day or two. The back and forth seems impossible to predict, as it could happen ay anytime, and go away as quickly as it arrived. One doctor said this sort of extreme is common. Has this been the case for others with Pancreatic Enzyme Insuffcanly? I am about at my wits end, and having to worry about leakage, especially when traveling.

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@jlmp

Severe uncontrolled diarrhea for two weeks before finally going to GI doctor. All I could put in my stomach without problems was chicken broth. Doctor ran many, many blood tests and stool tests and EPI was diagnosed two weeks ago. I’ve repeatedly asked what caused my pancreas to stop producing these enzymes but have gotten no answers. Problem literally began overnight. One day I was fine and the next I couldn’t eat anything without severe problems.

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I had horrible gas for about 6 months, then it took a horrible turn with uncontrollable diarrhea, then a diagnosis. Creon has helped. Have you had an update as to the cause of your EPI issues? They have found nothing so far..

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@penelope52

Did you take the poop test that gives current enzyme levels? Mine was 129 and I take 36,000 with each meal. Thanks for the info; I'm going to ask my gastro about this, as prescription replacements are very expensive.

Jump to this post

Hi,
I did take the test in May—number was 24.
Reading these post has increased my concern for EPI diagnosis.
I have chosen not to do the therapy, due to Pork enzymes source.
I am pursuing a natural source approach—-any suggestions? Hope everyone suffering from deseases find relief and total restoration.

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I want to alert people that a EPI diagnosis may not be EPI, but a SIBO instead. I have been taking CREON for 6 years. I went through a 3 day poop test. It was a test that told me not to take CREON for a few days before, so when the results came back, I still had a low enzymes, but I also had a SIBO. Next was a breath test. I had ( IMO) methane gas in my small intestines. That was the reason for my low enzymes. 2 weeks of antibiotics and 2 months of probiotics. My latest poop test (1 day) came back NORMAL. I have enzymes now and am no longer in need of CREON !!!

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Has anyone here had a stricture in their bile duct that has caused their EPI? I will have an MRCP soon to see if it is a stricture. Then, I’m assuming, if there is they will try to stint it with an ERCP. I am assuming that it was caused when I have my gallbladder removed. Wondering is this is a fix for the EPI and I can go off CREON.

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I’m not sure but theoretically it makes sense that a stricture could block the pancreatic digestive juices from entering the small bowel, and opening it up with a stint could restore the flow and resolve the problem. I hope that works for you if there’s a stricture in the duct!

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