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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geegeebabe | @geegeebabe | Mar 24 12:30am
In reply to @taftst1 "Zenpep? Had that years ago. It’s to bulk up stools. You must have gastro problems. Had..." + (show)
@taftst1

Zenpep? Had that years ago. It’s to bulk up stools. You must have gastro problems. Had Creon too I think, years ago. Zenpep helps you digest and get nutrients out of food.

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ZENPEP is not to bulk up stools, it adds the missing enzymes back into your system so your body can break the food down so it can be absorbed. The by-product is that your stools are bulked up because the food has been broken down and is being used properly.

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1 reply
jlmp | @jlmp | Mar 24 9:46am
In reply to @geegeebabe "I’m on ZENPEP. Medicare doesn’t cover Creon. Worked great for the first 3-4 months, now I’m..." + (show)
@geegeebabe

I’m on ZENPEP. Medicare doesn’t cover Creon. Worked great for the first 3-4 months, now I’m back where I started. Hard to get hold of my doc and he seems indifferent to helping me. From what I have seen, most Gastroenterologists seem to lack any empathy for their patients. I had a great one years ago, he was the top world wide doc in the field. He treated my sister for severe Crohns issues. He called her his miracle child. I also saw him for GI issues. He had a great bedside manner, was patient, informative, and gentle. Unfortunately, he’s retired now. I wish I could find someone like him. The guy my sister goes to now is different than my doc, but she says the same thing I do, he’s not very good. I have seen so many complaints about doctors not being empathetic at all. I don’t know if it’s because they have too many patients with issues, or if they just don’t give a damn. I wish you the b3st of luck.

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I was diagnosed 6 months ago and have the same kind of gastroenterologist. I am now driving three hours to a new doctor and clinic. I’m low in all three major enzymes, with lipase being extremely low. Zenpep works great but it is terribly expensive. I found a pancreatic enzyme medication that works exactly the same for me. It is Vital Nutrients Pancreatic Enzymes. It costs $38.

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1 reply
mrmarilyn | @mrmarilyn | Mar 24 10:21am
In reply to @geegeebabe "ZENPEP is not to bulk up stools, it adds the missing enzymes back into your system..." + (show)
@geegeebabe

ZENPEP is not to bulk up stools, it adds the missing enzymes back into your system so your body can break the food down so it can be absorbed. The by-product is that your stools are bulked up because the food has been broken down and is being used properly.

Jump to this post

yes, true, zenpep replaces the missing enzymes. it should be taken only with food.

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susanh824 | @susanh824 | Mar 24 10:22am
In reply to @geegeebabe "I’m on ZENPEP. Medicare doesn’t cover Creon. Worked great for the first 3-4 months, now I’m..." + (show)
@geegeebabe

I’m on ZENPEP. Medicare doesn’t cover Creon. Worked great for the first 3-4 months, now I’m back where I started. Hard to get hold of my doc and he seems indifferent to helping me. From what I have seen, most Gastroenterologists seem to lack any empathy for their patients. I had a great one years ago, he was the top world wide doc in the field. He treated my sister for severe Crohns issues. He called her his miracle child. I also saw him for GI issues. He had a great bedside manner, was patient, informative, and gentle. Unfortunately, he’s retired now. I wish I could find someone like him. The guy my sister goes to now is different than my doc, but she says the same thing I do, he’s not very good. I have seen so many complaints about doctors not being empathetic at all. I don’t know if it’s because they have too many patients with issues, or if they just don’t give a damn. I wish you the b3st of luck.

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I would look for someone affiliated with a large university. I’m in Columbus OH, and have an excellent GI through Ohio State.

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mrmarilyn | @mrmarilyn | Mar 24 10:23am
In reply to @taftst1 "Zenpep? Had that years ago. It’s to bulk up stools. You must have gastro problems. Had..." + (show)
@taftst1

Zenpep? Had that years ago. It’s to bulk up stools. You must have gastro problems. Had Creon too I think, years ago. Zenpep helps you digest and get nutrients out of food.

Jump to this post

no, given to replace enzymes that our bodies are missing with epi. works great. no more diarreah.

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slkanowitz | @slkanowitz | Mar 24 12:19pm

Amazon and other stores have Vital Nutrients Pancreatic Enzymes with 36500 units lipase. Much more affordable. I take it and it works well, just have to figure out how many a day keeps the diarrhea in check. Be sure to scroll down and enlarge the fine print on the ingredient list to make sure you’re getting the right dose. It’s about 80.00$ for 180 capsules. I’m getting by with one at lunch and dinner each, but it’s very individual what each of us needs.

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mitchdavis | @mitchdavis | Mar 24 6:44pm
In reply to @jlmp "I was diagnosed 6 months ago and have the same kind of gastroenterologist. I am now..." + (show)
@jlmp

I was diagnosed 6 months ago and have the same kind of gastroenterologist. I am now driving three hours to a new doctor and clinic. I’m low in all three major enzymes, with lipase being extremely low. Zenpep works great but it is terribly expensive. I found a pancreatic enzyme medication that works exactly the same for me. It is Vital Nutrients Pancreatic Enzymes. It costs $38.

Jump to this post

I took creon for several years under Medicare but it was still very expensive with the donut hole, etc. someone on this site told me to go to PatientAssist on AbbVie site and apply for help with cost. I got approved asap and am now in second year, getting 500 24000 mg creon per month.
Best thing ever!

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sb4ca | @sb4ca | Mar 26 8:15pm
In reply to @geegeebabe "I’m on ZENPEP. Medicare doesn’t cover Creon. Worked great for the first 3-4 months, now I’m..." + (show)
@geegeebabe

I’m on ZENPEP. Medicare doesn’t cover Creon. Worked great for the first 3-4 months, now I’m back where I started. Hard to get hold of my doc and he seems indifferent to helping me. From what I have seen, most Gastroenterologists seem to lack any empathy for their patients. I had a great one years ago, he was the top world wide doc in the field. He treated my sister for severe Crohns issues. He called her his miracle child. I also saw him for GI issues. He had a great bedside manner, was patient, informative, and gentle. Unfortunately, he’s retired now. I wish I could find someone like him. The guy my sister goes to now is different than my doc, but she says the same thing I do, he’s not very good. I have seen so many complaints about doctors not being empathetic at all. I don’t know if it’s because they have too many patients with issues, or if they just don’t give a damn. I wish you the b3st of luck.

Jump to this post

Have you had a scan called an MRCP that is a special MRI just for imaging the entire biliary tree (liver, gallbladder & pancreas). Or other imaging tests that have identified a pancreatic issue? Often I hear people getting diagnosed with EPI but are unaware of the reason why their pancreas is not releasing adequate enzymes. To me, the deficiency isn't the biggest problem, it is why you have the deficiency to begin with. If you haven't been given an explanation, there might be an underlying condition that has not yet been diagnosed and causes continued symptoms such as mild but chronic pancreatitis.

REPLY
2 replies
geegeebabe | @geegeebabe | Mar 29 5:54pm
In reply to @sb4ca "Have you had a scan called an MRCP that is a special MRI just for imaging..." + (show)
@sb4ca

Have you had a scan called an MRCP that is a special MRI just for imaging the entire biliary tree (liver, gallbladder & pancreas). Or other imaging tests that have identified a pancreatic issue? Often I hear people getting diagnosed with EPI but are unaware of the reason why their pancreas is not releasing adequate enzymes. To me, the deficiency isn't the biggest problem, it is why you have the deficiency to begin with. If you haven't been given an explanation, there might be an underlying condition that has not yet been diagnosed and causes continued symptoms such as mild but chronic pancreatitis.

Jump to this post

I insisted the Dr check for pancreatitis and cancer, so I had full work up done. Have 2 spots on my pancreas but they are not cancerous, also a non invasive gallstone. I was diabetic, but my A1c has dropped to pre-diabetic levels. Have a telemed appointment for next week, so we’ll see what he says. I have started spacing the ZENPEP out to one when I start 5he meal and one at the end, but things are still upsetting my stomach. Plus, I get chills after an episode. On top of all of this, I just found out I have a second meningioma (benign brain tumor), which means I’ll be dealing with that over the next few years. Specifically, either surgery or radiation to eradicate in, probably within the next month. So it will be a lot of issues with that, plus my EPI acting up. Sometimes it’s no fun getting older, but it sure beats the alternative. I keep telling people that God has me here for a reason- I has a stroke at 35, two brain tumors, spent a summer in a nursing home/ rehab for surgery on my ankle, almost fell off a mountain while skiing, now EPI, but I’m still going! Just happy he has seen fit to let me stay- I’m enjoying the ride!

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hammock117 | @hammock117 | Aug 15 9:16am
In reply to @sb4ca "Have you had a scan called an MRCP that is a special MRI just for imaging..." + (show)
@sb4ca

Have you had a scan called an MRCP that is a special MRI just for imaging the entire biliary tree (liver, gallbladder & pancreas). Or other imaging tests that have identified a pancreatic issue? Often I hear people getting diagnosed with EPI but are unaware of the reason why their pancreas is not releasing adequate enzymes. To me, the deficiency isn't the biggest problem, it is why you have the deficiency to begin with. If you haven't been given an explanation, there might be an underlying condition that has not yet been diagnosed and causes continued symptoms such as mild but chronic pancreatitis.

Jump to this post

MRCP was ordered yesterday by a Hematologist. A test I never heard of along with a special MRI that requires a certain MRI machine.
My gastroenterologist referred me to Hepatologist.
It matters which gastroenterologist you see.
I tried a local Dr he did not want a face to face only colonoscopy and endoscope. His report sd no Barretts, no sign of Chron's. I asked him on portal if I had a magical healing. He did not like being questioned. He only took 3 pictures and 2 biopsies. Sd for me to return to Tampa Gastroenterologist.
I did stages of Barrett's, fistula in esophagus, small bowel Chron's, gastroparesis.
Follow your instincts, change Dr if no answers.

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