1. < Digestive Health

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.

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trowell94 | @trowell94 | Jul 22 10:42am

My son, age 29, was diagnosed with chronic pancreatitis with necrosis. He has been taking zenpep for quite a while. He takes 3 before each meal and 2 before snacks. They do seem to help but we had to play around with them to find the best time to take them. Whether it was 30 minutes before his meals, as soon as he started to eat or right after. The creon or zenpep are pancreas enzyme replacements. If any of you are on Facebook, join as many groups on Pancreas disease you can join. They have been a life saver to us. Good luck to you all.

REPLY
moodysgoose | @moodysgoose | Jul 27 7:38am
In reply to @mizzousc88 "I was told.. No need to take one with small snack. Def not with just eating..." + (show)
@mizzousc88

I was told.. No need to take one with small snack. Def not with just eating veggies or fruit.
Big thing is to take with fat- whether good or bad fats. Best to avoid made fats but need fats to absorb some nutrients. Nuts, olive oil, grilled meats..,
Avoid processed foods.

Jump to this post

Thank you. I am wondering how you got so much information from your GI. It seems there is little information from them, including mine.

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2 replies
mizzousc88 | @mizzousc88 | Jul 27 11:14am
In reply to @moodysgoose "Thank you. I am wondering how you got so much information from your GI. It seems..." + (show)
@moodysgoose

Thank you. I am wondering how you got so much information from your GI. It seems there is little information from them, including mine.

Jump to this post

I have gathered I formation from NP at GI office as well as dietitian. Plus I follow a EPI dietitian on FB who is very knowledgeable in this area. I also follow a EPI support group on FB. Many folks in this group have had EPI for years and share their experiences. Read various articles from reputable sources. The more you educate yourself the better you are at advocating and helping manage the condition.

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1 reply
rashida | @rashida | Jul 28 7:00am
In reply to @pennie225 "The symptoms also came on for me pretty quickly, one week I was eating a cheeseburger..." + (show)
@pennie225

The symptoms also came on for me pretty quickly, one week I was eating a cheeseburger and ice cream and the next week it made me sick. I found it helpful to keep a food diary because everyone is different. For me, I am now lactose intolerant. My doctor also had no explanation for why EPI happened, his guess was old age, I was 65(is that old?) when diagnosed. Try switching to some plant based diet options, think fruit smoothie with a scoop of protein powder and oat milk and you only need 1 Creon or ZenPep. I live in Florida so I use frozen fruit and chocolate protein powder and pretend it’s a milkshake.

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@pennie225 at 65 you definitely are not old!! I think doctors use age as an excuse to explain away any symptoms they cannot diagnose! Another explanation starts with “at your age …” 🙄

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rdschicago | @rdschicago | Jul 28 7:44am

Does anyone have PEI as a result of Crohn’s? That’s my case. I have good days and bad days. Creon has definitely helped the gas and fatty, odorous stools and diarrhea but since losing 25 pounds since having a third a small bowel resection a year ago, which is, around 15% of my body weight, I am having trouble putting any of that weight back on. Any suggestions? And once we have PEI, will we always have it and have to stay on Creon forever, or is this something that can be cured, for want of a better term?

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penelope52 | @penelope52 | Jul 28 9:20am

Thanks mizz, I joined FB group, waiting on acceptance now.

I was diagnosed over a year ago and it is my understanding from the gastroenterologist my EPI is not curable (section of pancreas is atrophied), so CREON forever. My big hope is a generic form of this medication, as it takes up a large part of my income. Does anyone know if there is a generic coming on the market soon ,or has one recently hit the market? I am talking about the prescription form, not over the counter.

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1 reply
kamommy | @kamommy | Jul 28 5:17pm
In reply to @moodysgoose "Thank you. I am wondering how you got so much information from your GI. It seems..." + (show)
@moodysgoose

Thank you. I am wondering how you got so much information from your GI. It seems there is little information from them, including mine.

Jump to this post

GI dr. Not helpful at all.

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jkarmazin | @jkarmazin | Jul 29 5:32am
In reply to @penelope52 "Thanks mizz, I joined FB group, waiting on acceptance now. I was diagnosed over a year..." + (show)
@penelope52

Thanks mizz, I joined FB group, waiting on acceptance now.

I was diagnosed over a year ago and it is my understanding from the gastroenterologist my EPI is not curable (section of pancreas is atrophied), so CREON forever. My big hope is a generic form of this medication, as it takes up a large part of my income. Does anyone know if there is a generic coming on the market soon ,or has one recently hit the market? I am talking about the prescription form, not over the counter.

Jump to this post

Have you tried to get assistance from AbbVie? Go to Creon.com and fill out there financial assistance and send one to your Dr. They will contact you!

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1 reply
penelope52 | @penelope52 | Jul 30 4:03pm

For those receiving assistance from Abbvie, go to their website and read new financial requirements. They have lowered the income amounts and some may no longer qualify for assistance.

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