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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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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@frannee

Thanks to all of you for offering info on EPI. I am beginning to get an understanding of what I am supposed to be eating. I ordered the Vital pancreatic enzymes from Amazon today, hoping that I can occasionally substitute for some of the CREON and make it last longer.
Question: Can I have a glass of wine occasionally? I had an MRI and no problem with pancreas. My EPI test was 115. I am worried that alcohol would put me in danger of pancreatitis. Any info on that?

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How can an MRI show "no problem" with pancreas?

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@vuk

I went thru the same confusion after my EPI was discovered. Dr said nothing re: how, what or when I should eat (after having lost 35 lbs in 15-18 months much of which I must assume was muscle.)
I began on no diet since I was not given a diet, but started by eating normally but more often and drinking 2-3 bottles Ensure daily and gained about 3-4 lbs in first 3 months so asked Dr if I could cut back from 4 to 3 12K Creon to 'test' myself to which he said yes. THat was around Oct 2022 and by Xmas I had lost the 3-3.5 pounds I had gained. Dr never had given advice on what to eat. His PA told me to take at least the first 3 of the recommended 4 CReons with 'a meal' and then I could take the last (4th) Creon in the evening with a few tbsps of apple sauce and a piece of toast.
When this did nothing for me, I tried to find an 'EPI Diet' on internet and found the usual Mediterranean type diets, etc in which there were very few calories and ultra-complicated (IMO) meal prep. As my weight hovered around 138-140 I asked the Dr JUST WTH SHOULD I EAT to gain weight! Surprisingly, after about 9 months of floundering around and looking for a system or protocol of gaining weight, Dr replied "Eat everything! Pig Out! I just want to see you get calories so you can put some pounds on." I asked him about calories and he said (for the first time in a year!) that I should eat 2,000 calories a day.
I started buying pre-cooked meals @ Costco. All kinds according to the caloric content for certain amounts in ounces or grams so I could eat a 'main' dish at at least 300 calories then take something else like Ensure (220 ca) potatoes etc to reach the 500 target.
I am hardly ever hungry enuff to eat 2,000 calories in 4 meals as I feel that it takes me at least 3 or more hours to simply DIGEST the 500 calories I ate before it's time to eat again.
I eat a lot of pasta, roastbeef, pancakes, 1 cup Old Fashioned oatmeal every morning (300 calories) and 8 oz Ensure with it. I eat 1/2 an avocado with some 'meals' since I found avocado has fat and 1/2 avocado is about 140 cal. My cholestrol has always been low and I am thinking to have my GP check it every so often to make sure trying to 'fatten up' is not affecting that.

Since starting the Ensure again about 6 weeks ago and trying to get close to 2,000 cal a day I've gained about 4.6 pounds. For some reason, I personally think the Ensure has as much if not more to do with my slight weight gain.
I don't know if this helped or not, but I do know that it took me some months before I finally near-challenged the Dr to TELL ME THE NUANCES OF HOW AND WHAT I SHOULD EAT!
Long story short, he must have thought that NOT telling me to go on a certain diet would cause me to eat no differently on Creon than I would eat before the EPI was discovered.

As I get older, encounter COPD and emphys, A Fib, Stage 3A kidney, etc., I truly find that too many doctors treat every patient as a lesser organism and for this reason the doctors themselves have learned to pay little or no attention to a patient who thinks and remembers and asks questions in DETAIL.
In that fashion, it's actually the PATIENTS WHO SPOIL the doctors b/c the patients look to the doctors as being minor gods who have no faults and the DRs are not moved or forced to be more specific with each patient..

I have been to Drs who should not have been allowed around a patient and also to some doctors who spoke and stood or sat in such blissful calmness that you could sense their concern and sincerity coming thru their faces eyes and skin.

Then again - things are different today: In the late 70's / early 80's A noted Diagnostician from a well known midwest university hospital told a relative of mine in Chicago that hospitals were 'becoming corporations.' A GP has very little time with a patient save to refer him/her to another physician in the same hospital system; Doctors also are too busy to spend the time it takes to gain an instinct for the several problems individual patients bring to their offices. Etc..etc..

Just recently here in Michigan, Beaumont Hospital system joined with a system called Corell or some similar name. In the first week of their 'joint venture,' my wife and I both received a letter stating that much if not all of Beaumont's health records were "accidentally" compromised! I had to wonder if it was truly an 'accident' or not!!

And I still do.

Good luck and Blessed wishes to all...

((Pig Out - Take the Creon and see what Happens!!))

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I can certainly empathize with your comments, as in a similar position.
So true, your statement: "... doctors themselves have learned to pay little or no attention to a patient who thinks and remembers and asks questions in DETAIL." Most doctors seem to resent self-advocating patients who try to learn about their condition(s) by visiting reputable medical websites.

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I couldn’t get in to see my GI doctor so I saw a NP in my GI group who ordered all the diagnostic tests. An office nurse called to give me the diagnosis. I’ve repeatedly asked for the NP to call me back to talk about diagnosis with no result. I’ve never seen or talked with an MD. I’m furious with them and have since learned that others have the same problem with this group. I’ve made an appt. with a GI doctor in a nearby city and plan to go just sit down and talk to him and ask questions.

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I was healthy overall and then last April/May started having digestive issues. Elastase tests in May & December confirm severe PI. Also did an MRI of the abdomen and got an all clear. So, at this point Doctor has no idea on the cause. I've always kept a food journal because I lived low carb for 20 years. What I did realize was I introduced Brazil nuts into my diet last April. After doing some research I realized that I caused selenium toxicity by eating so many in a month. Selenium is not listed on the nutrition label and there are no warnings. The kicker is there is no way to prove it impacted my pancreas. Now I live on Zenprep and an expanded vitamin regimen. Still doing low carb, high protein and health fats. Have to keep beer & bourbon to a minimum and cutback on cigars, which is a gut punch.

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@kt129

I can certainly empathize with your comments, as in a similar position.
So true, your statement: "... doctors themselves have learned to pay little or no attention to a patient who thinks and remembers and asks questions in DETAIL." Most doctors seem to resent self-advocating patients who try to learn about their condition(s) by visiting reputable medical websites.

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I also think that many (Dr's) allegiance to the general "Process" (of prescribing/medicating etc) has become more important to them than their allegiance to the individual "Patient."

I have learned by permanent future negative results of having taken a few prescriptions not to pick one up from the pharmacy until I have gone there, seen the exact name of the prescription, then gone home and researched it in detail by myself before deciding if I will take it or not.

It's often sadly amazing what Dr's AND PA's (tho I have found many PAs have more time for calm discussion than most Drs) have prescribed while either 1) not knowing the negative potential/aspects of what they are prescribing or 2) not asking me if I have any of the issues which their prescription might exacerbate.
And I suppose #2 is the same as #1 from the opposite direction 🙂 🙂 🙁

Nature to me has always been the Great Healer.

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I enjoy snacking on nuts throughout the day. Have any of you found any nuts that don’t require an enzyme capsule? I don’t want to waste a capsule several times a day for a handful of nuts.

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I snack on nuts too. Almonds and sometimes mixed nuts. I find that if you keep it to just a little handful you shouldn’t need an enzyme. Plus it’s a good source of protein.

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@debhammel

I was not aware of this OTC supplement - the contents are very close to Creon. I've ordered some to use for snacks instead of taking Creon to extend the Rx a bit further. The Creon is super expensive!

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My CREON prescription is about to run out. The pharmacy is out of stock. Can I substitute Vital enzymes until I pharmacy obtains more CREON? The VITAL ones are not enteric coated. Does that mean they will dissolve before reaching pancreas?

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@frannee

My CREON prescription is about to run out. The pharmacy is out of stock. Can I substitute Vital enzymes until I pharmacy obtains more CREON? The VITAL ones are not enteric coated. Does that mean they will dissolve before reaching pancreas?

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Your pharmacy should be able to order Creon and get it the next business day. I'd pursue that first. I'm not a medical practitioner or an expert by any means but if all else fails I'd take the Vital Nutrients supplement - but make sure you take enough capsules to match your Creon dose. I don't know if they will dissolve before reaching your small intestine, which is where you need the digestive enzymes. Ask your pharmacist if they know whether these will work as a replacement until you can get your Creon. And let the rest of us know what you find out 🙂

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