1. < Digestive Health

New to exocrine pancreatic insufficiency (EPI): What helps?

Posted by jewill @jewill, Dec 6, 2016

I was dignosed with e p i. Exocrine pancreatic insuffency in 2015 after having a severe reaction to premarin estergen cream then 2 weeks later i had an even more sever reaction to an infusion of reclast it is a biphosphonates l am severly allergic to phosphates, dr did not check for that. i had diarrhea lost 20 lbs destroyed 90 % of my pancreas dr gave me creon 3600 2 with each meal low fat diet that is all the information i got from him did research on web for diet and supplments .need a dr in austin tx that knows more about e p i would apprecate any info on this thank you jewill

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myrrh739 | @myrrh739 | Jun 20, 2023
In reply to @stageivsurvivor "After I was prescribed Creon at a starting dose of 24,000 lipase units, I optimized the..." + (show)
@stageivsurvivor

After I was prescribed Creon at a starting dose of 24,000 lipase units, I optimized the amount I needed for a specific meal by keeping a daily food journal. The starting dose was calculated using the formula provided by the manufacturer which is based on the patient following the recommended diet predominantly non-fat and low fat. Although the dosing calculator Abbvie has saying for my body mass (120-130 lbs), I should take one 36,000 capsule, the 24,000 capsule has been satisfactory for most meals as I stick to non-fat and low fat fairly consistently.

By keeping a daily food journal noting day/time, type of meal, quantity and fat content and then noting the GI symptoms and stool characteristics 24-40 hours later (the time it takes for food to be digested and excreted by an adult), I quickly identified what meals (fat content, portion size) required more pancrealipase. It did take long to optimize as I kept to a consistent diet the first month. Slowly I began increasing the quantity of type of foods which included some additional fat. Already having a good idea of what was working, it became easy to extrapolate when to add more pancrealipase capsules to keep the GI tract functioning normally.

An oily sheen and stickiness of the stool is likely caused by undigested fats indicating more enzyme is likely required. When taking capsules, I take my first capsule immediately Before or after the first bite and then stagger taking additional capsules throughout the meal. This keeps a consistent level of enzymes in the intestine available to digest the target substrate (carbohydrates, fats, proteins). By staggering, it more closely resembles how a fully-functioning pancreas works which produces and secretes enzymes in response to food entering the intestine and sending a signal to the pancreas by way of releasing a hormone that binds to receptors in the pancreas that more enzymes are needed.

If optimizing by increasing the number of capsules to the maximum suggested by the dietitian is not achieved, the manufacturers and dietitians suggest trying a different Rx brand. Although all the Rx brands are derived from porcine pancreas, they differ in performance within and between individuals as a result of how the enzymes are extracted, processed, purified, concentrated, the time-release coating used and binders and fillers added. For these reasons, one should evaluate different brands if the first one does not perform optimally. I also stick to recommendations of PanCan.org and dietitians of avoiding fats, red meat in moderation and the vegetables that are hard to digest.

https://letswinpc.org/managing-pancreatic-cancer/2019/10/09/pancreatic-enzymes-explained/https://flatulencecures.com/vegetables-that-cause-gas/http://media.pancan.org/pdf/patient-services/booklets/Diet-Nutrition-Booklet-Digital.pdf

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Thank you for sharing this information it's very helpful

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susanh824 | @susanh824 | Jun 20, 2023
In reply to @irr4et "I’m on Pertze and doing well except I have to wk g hard to keep on..." + (show)
@irr4et

I’m on Pertze and doing well except I have to wk g hard to keep on wt, partly bc my family are all sort of thin. Constipation is my big issue. Does that go along with EPi?

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While diarrhea is more common with EPI, there are people like me who experience constipation instead.

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1 reply
kathy4 | @kathy4 | Jun 21, 2023
In reply to @susanh824 "While diarrhea is more common with EPI, there are people like me who experience constipation instead." + (show)
@susanh824

While diarrhea is more common with EPI, there are people like me who experience constipation instead.

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I have to take medications to help with constipation like Amitiza and domperidone.

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sunlover | @sunlover | Jul 7, 2023

I'm an active grandma who was diagnosed with EPI in May 2023. GI doctor was vague about diet and I'm looking for any help. His advice was low fat (how low?), bland (how boring?), low fiber (what a change for me) and I'm trying but need something more specific. I've read and printed lists of food to avoid which MIGHT be helpful, pretty much everything! Nutritionist is not covered by insurance but I will pay the $50 a virtual session for a few visits if they can help - when I can get an appointment. So very thankful that Creon is covered! I think it is helping and now big problem is terrible gas. Diarrhea is much better but the gas! I understand keeping weight on is important and that seems difficult with low fat. I'd appreciate any suggestions and must say that life is still good, just frustrating.

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3 replies
grannydee | @grannydee | Jul 8, 2023
In reply to @sunlover "I'm an active grandma who was diagnosed with EPI in May 2023. GI doctor was vague..." + (show)
@sunlover

I'm an active grandma who was diagnosed with EPI in May 2023. GI doctor was vague about diet and I'm looking for any help. His advice was low fat (how low?), bland (how boring?), low fiber (what a change for me) and I'm trying but need something more specific. I've read and printed lists of food to avoid which MIGHT be helpful, pretty much everything! Nutritionist is not covered by insurance but I will pay the $50 a virtual session for a few visits if they can help - when I can get an appointment. So very thankful that Creon is covered! I think it is helping and now big problem is terrible gas. Diarrhea is much better but the gas! I understand keeping weight on is important and that seems difficult with low fat. I'd appreciate any suggestions and must say that life is still good, just frustrating.

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Hi, I’m a granny too🫶🏽
So happy you are on here!
First of all, have you joined (free) the National Pancreatic Foundation???
They have a lot of references and help!!!
Also, as a fellow Medicare
senior, most will cover several visits with a RD (registered dietitian)
They are well worth the cost!!! Each of us with EPI have different needs with a diet because it’s going to depend a lot on what you can consume with the least irritations and symptoms! Even though we take the enzymes we all react according to our specific bodies. I hope this helps you and please be encouraged! I enjoy my life SO very much! We can thrive, it just takes patience and understanding what to try to avoid and what works and keeps you happiest!
Best of hope and progress!

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sunlover | @sunlover | Jul 9, 2023

Grannydee, thanks so much for your encouragement. I had never heard of EPI before my diagnosis and have been frustrated by conflicting info on line. Will keep trying!

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laker67 | @laker67 | Jul 9, 2023
In reply to @sunlover "I'm an active grandma who was diagnosed with EPI in May 2023. GI doctor was vague..." + (show)
@sunlover

I'm an active grandma who was diagnosed with EPI in May 2023. GI doctor was vague about diet and I'm looking for any help. His advice was low fat (how low?), bland (how boring?), low fiber (what a change for me) and I'm trying but need something more specific. I've read and printed lists of food to avoid which MIGHT be helpful, pretty much everything! Nutritionist is not covered by insurance but I will pay the $50 a virtual session for a few visits if they can help - when I can get an appointment. So very thankful that Creon is covered! I think it is helping and now big problem is terrible gas. Diarrhea is much better but the gas! I understand keeping weight on is important and that seems difficult with low fat. I'd appreciate any suggestions and must say that life is still good, just frustrating.

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I'm an active grandpa diagnosted wiht EPI in 2016. I also was diagnosed with Type 2 Diabetes around the same time, so I had already modified my diet to watch carbohydrates and sugar. I lost 35 lbs before EPI was diagnosed. After about a year my GI doc said I probably don't need to worry about fat any more and haven't had any issues. My weight has been pretty stable since the dignosis.
I also wanted to speak with a nutritionist and asked my GP doc for a referral. The insurance co denied paying, and I called them to explain my situation and that it was after a doctor referral, not simply a request. It did get covered.

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1 reply
sunlover | @sunlover | Jul 9, 2023
In reply to @laker67 "I'm an active grandpa diagnosted wiht EPI in 2016. I also was diagnosed with Type 2..." + (show)
@laker67

I'm an active grandpa diagnosted wiht EPI in 2016. I also was diagnosed with Type 2 Diabetes around the same time, so I had already modified my diet to watch carbohydrates and sugar. I lost 35 lbs before EPI was diagnosed. After about a year my GI doc said I probably don't need to worry about fat any more and haven't had any issues. My weight has been pretty stable since the dignosis.
I also wanted to speak with a nutritionist and asked my GP doc for a referral. The insurance co denied paying, and I called them to explain my situation and that it was after a doctor referral, not simply a request. It did get covered.

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Thanks, laker 67. It sounds like you are doing well and that encourages me. I will definitely try to get insurance to reconsider. They do cover for diabetes so there's hope! I'm so thankful that they cover the Creon - what a shock to see the full price.

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ajh5285 | @ajh5285 | Jul 10, 2023
In reply to @sunlover "I'm an active grandma who was diagnosed with EPI in May 2023. GI doctor was vague..." + (show)
@sunlover

I'm an active grandma who was diagnosed with EPI in May 2023. GI doctor was vague about diet and I'm looking for any help. His advice was low fat (how low?), bland (how boring?), low fiber (what a change for me) and I'm trying but need something more specific. I've read and printed lists of food to avoid which MIGHT be helpful, pretty much everything! Nutritionist is not covered by insurance but I will pay the $50 a virtual session for a few visits if they can help - when I can get an appointment. So very thankful that Creon is covered! I think it is helping and now big problem is terrible gas. Diarrhea is much better but the gas! I understand keeping weight on is important and that seems difficult with low fat. I'd appreciate any suggestions and must say that life is still good, just frustrating.

Jump to this post

I too have a lot of bloating and gassiness, and have not found a reliable solution. I'm wondering what others have found that works.
I have discovered that a small amount of real sugar is much better than stevia which makes the gas and bloating ever so much worse.

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vuk | @vuk | Jul 10, 2023

I began Creon last Fall for EPI. I too lost 30# in a period of about 16-18 months thru which I stabilized @ 165 then started going down until I reached 145 @ which time Gastro's PA tested stool and found fatty stool indicating EPI
I THINK(?) I started on Ensure OTC drinke then went to 12000 Creon 4 x daily. I gained 2-3 pounds by Xmas but asked Dr if I could cut back Creon to see what happens and he said try 3 x day after which I seemed to lose the 3# that I gained plus went to 140#.
I found an EPI diet and tried it but I gained no weight so I went to Gastro and told him what was oging on as I had been eating EVEYRYTHING when I began the Ensure and Creon w/o a 'diet.'
He said he DID NOT WANT ME ON A DIET but to eat everything I felt like eating just to see if I could gain some weight and go back to the 4 Creon.
I went back to 'no diet' and have gained about 2# in last 4-6 wks tho I have little appetite as I did last Fall. I usually have oatmeal in AM w/ Banana, some kind of meat for lunch (even bologna sandwich on whole wheat once or twice!) and 4 oz burgers at times for lunch/supper or Aldi's braised pork pieces, etc. Pizza too if I want. IE I have no 'diet per se.'
I don't always eat a 4th 'meal' but was told by PA it was OK to take piece of toast w/ 3 table spoons room temperature apple sauce for last 'meal' of day.
I will eat green beans with 3-4 oz of meat at a 'meal' or sweet potatoes and am thinking fruit cocktail might be OK also. I do eat eggs and bacon or sausage patties at times for 'lunch' but basicall brkfst is Quajer Oatmeal usually w/banana. I also like Kashi cinammon wheat with coconut almond milk which I bought today.
I don't know if I'm helping anyone. I am thinking however, 'Did I gain the first few pounds on the Ensure????

Creon has 'seemed' to have increased my normal pulse rate (usually in mid 70's but for sometime now in mid 80's 90's and a few times 100) which I read Creon can do tho my BP is in safe range for 80 y.y. Also lately lots of gas. (Then again, I did eat 3-4 tsps Potato salad for 3-4 days w/some meals so that might have contributed!)

I know I have lost much muscle as well and can understand the concern others may have when they hear"Pancreas" but the fact that the Gastro wanted me to eat everything I wanted to see if I could absorb some calories seemed to alleviate the severity of the EPI at least at present.

Then again, there is always the thot of 'What if I quit Creon (which my BC pays all but $82 for) and try the Assure (which is actually MORE expensive per 'dose' than the Creon!) to see if I gained more weight from the Assure than the Creon in the first place????????

And what about my resting heart rate IF I wanted to go to health club and start walking in a pool lane and trying to swim a little in between lengths of walking?

Will kicking up that pulse rate be dangerous?

Seeing the Gastro day after tomoro and will report anything interesting. Also seeing heart Dr Aug 1 to ask question I posed above re: Creon and pulse rate. (Had 75% intense heart ischemia 5-6 yrs ago but it collateralized self and swimming 1/2 mile per day at that time induced no negative effects.

So many questions / concerns. Weeks to see one doctor and more weeks to see the next and few if any seem to have the time to listen to your recent histories and make any diagnosis before just sending you off to another type Dr in their system.

And that might be the most troubling part of seeing Drs at all. 🙁

Take care - Look for sunshine - I also believed that nature Herself is one of the greatest 'healers' since it goes IME right to one's soul/

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