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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That is my problem too! I was diagnosed 2 months ago. Prescribed CREON (very expensive). I take 1 w/snack, 2w/meals. I haven’t been told anything more. I am googling EPI and have joined this discussion in order to find out what I’m to do. Can any of you offer some suggestions?

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@frannee

That is my problem too! I was diagnosed 2 months ago. Prescribed CREON (very expensive). I take 1 w/snack, 2w/meals. I haven’t been told anything more. I am googling EPI and have joined this discussion in order to find out what I’m to do. Can any of you offer some suggestions?

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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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@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?

Jump to this post

I try to save my capsules also. The problem I have is that I am on the thin side and don’t want to lose weight. I’m not sure what is considered a snack? For breakfast this morning, I took two capsules with coffee w/a bit of milk, some blueberries & very small slice of gluten free gingerbread. That, I doubt, is not going to add weight! And I’m still hungry 😡

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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.

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My doctor also gave little info on my Creon posting other than take two with each meal and one with each snack. No definition of what constitutes a "snack." I read somewhere (can't remember what website) that a very small snack won't require a dose. You should be able to eat your normal diet. You might want to Google the medication and look for the manufacturer's website - often they will post patient information that "should" come with your prescription but often doesn't. Some websites, like the one for Creon, has a lot of helpful info and some even offer financial assistance programs. The other thing I have been doing is if I eat a mini snack (maybe a handful of popcorn for example) I take an over-the-counter digestive enzyme. I use Pure Encapsulations Digestive Enzymes with HCL, which you can find on Amazon. It's not cheap but way less expensive than the Rx's. I had started taking this after my gall bladder surgery 10 years ago when I noticed I was having some issues digesting certain foods. I am not suggesting using this instead of the Rx's as it doesn't have nearly the amount of Lipase that the Rx's do - and when you eat fat you really need this one!

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Wonderful information. Thank you all. It is terrible how doctors don’t help with this lifestyle change. More questions: what about dairy? Fat-free milk? Are some cheeses better than others for EPI? I don’t normally take any over the counter vitamins. Due to malabsorption do I now need to?

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I have been on CREON since 2018. Yes to a low fat diet. I am also get a discount pricing thru the CREON maker ABBVIE . I also have insurance and not MEDICARE . But the discount is a $40.oo payment for 3 months. I think you can apply thru the ABBVIE website…hope that helps for you…

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Also take the pills as you eat , not all at once but space between foods and pills so the enzymes work on digestion.

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Can I ask you what were your symptoms prior to diagnosis ? and did the doctors tell you what was the cause of this condition? I am having some unexplained digestive symptoms that many doctors couldn't diagnose and I am suspecting EPI as a diagnosis.

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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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