Does anyone have EPI (Exocrine Pancreatic Insufficiency)?

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.

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.

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.

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.

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.

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.

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!!))

I was diagnosed with EPI approximately 5-6 months ago after about a year and 1/2 of unexplained weight loss of over 30 pounds nausea, etc etc.
I was eating extra cheese on everything possible , eating unhealthy but thinking calories so I don’t lose more weight. My cholesterol was not affected but when I spoke with a nutritionist I was told I needed to completely stop eating in that manner - the extra cheese and fatty foods was extremely bad for my overall health, which I agreed. And this was all before my EPI diagnosis- I tried to eat better and drink ensures but still was loosing the weight
Now that I’ve been diagnosed, I’ve been taking Creon and started to gain weight (slowly) but better than losing it.
I’ve just had some biopsies taken from my stomach and this Friday will have EUS Procedure. Then should have all my results by the end of this month as to why my pancreas stopped working, etc
I’m very scared of the EUS procedure.

Reading your post, I personally don’t think eating everything and anything- the best thing is to do, Find a Nutritionist and explain your diagnosis.

Thanks for your post , so many similarities of what I’m going through-this is all new to me and learning from this site

I eat no cheese or anything that might be mucus-creating, binding or harder to digest. I eat pasta occasionally but usually I eat meats that contain 190 - 250 calories, even in microwavable dinners. I look for caloric content in foods that have good fats, i.e peanut butter smoothie w 1/2 avocado, coconut milk & banana for brkfst which often goes to 400 or 450+ calories to which I can add rest of needed calories from many available protein drinks but NOT ensure. (Gastro told me 2 months ago that I could take up to 4 bottles of Ensure daily but believe me when I say that much definitely works as an over the top laxative as proven to me one day when I was fortunate to be at home and not out somewhere! I looked at Enusre web site and it advised 1 or max of 2 bottles of Ensure daily for over 65 yo so I quit taking it at all.
I was down from 142 to 135 Jan 9 b/c I had had type A flu for a while but since late Jan I have gone up to 150 lb on the 2K calorie diet I now try to maintain.
I always try to keep something wholesome with fat (but NOT junk) that I can add to my main meal in order to get the 500 minimum calories 4 times a day; often I can even add enuff to go to 600 or 600+.
I might have half a blueberry muffin on occasion to supplement what it takes to meet or exceed the 500 per meal requirement, but that is just a minor 'additive' when needed.
As far as real 'junk food' I eat very little or none compared to my regular foods.
I also wonder if the Creon might be less conducive to weight gain in my case than another such medication. It's not unusual for many doctors to blame the patient and ignore the medication as I have found that to many doctors the 'process' takes precedence over the 'processor'/patient.)
I could go on and on with my experiences re: doctors and especially many of their PA's, too many of whom think they are doctors at the expense of patients by writing prescriptions which I myself have checked and discovered the prescriptions were dangerous for conditions I had next to the condition for which the PA was writing the prescription!
As many prescriptions in the past have given me permanent negative future results, I won't pick up a prescription until I go to CVS, look at the name, then go home and check it out to see how it might affect conditions I already have.
Then again - I have always been xtra sensitive to prescription drugs and have to be xtra careful as too many doctors and their PA's are often so busy they don't seem to have enuff time to know what they are prescribing.
EX - One shot of 'Qnasl' nasal spray in each nostril prescribed by an allergy doctor gave me glaucoma. My own GP said he asked some of his colleagues if that could happen and all said 'No,'
My ophthalmologist who was nationally known said that that one shot per nostril raised my IOP from 19-and-equivocal to 42 overnight! The chemical in the drops was Beclomethosone.)

Your body is often your best laboratory if you are attentive and have a good long memory