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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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lon | @lon | Sep 22, 2022
In reply to @gman007 "I think the difference in diet recommendations are likely a result of the physician's experience with..." + (show)
@gman007

I think the difference in diet recommendations are likely a result of the physician's experience with the disease and what has and has not worked for their patients. A compromised pancreas makes it more difficult to digest all food and fat is the most difficult of the three types of food we consume to digest. If you have had no problems with consuming fat, I am envious. Even with digestive enzymes (I have also taken Zenpep at near the level you do as well as pancrealipase (sp?) and another generic enzyme before they were removed from the market), most of us with EPI are racked with pain after eating large amounts of fat. I don't try to get to zero grams, but something below 40 grams works best for me. I also try to avoid large meals instead opting for 4-6 of 300 calories or less. My total calorie goal is about 1600/day unless I have an unusually long exercise session or golf when I am losing lots of fluids.

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You have a good plan going. Have you lost any muscles in your arms? That is my biggest problem.

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jenatsky | @jenatsky | Sep 28, 2022
In reply to @kamama94 "As a type 2 diabetic with renal failure and gastroparesis, I'm wondering if I might also..." + (show)
@kamama94

As a type 2 diabetic with renal failure and gastroparesis, I'm wondering if I might also have pancreatic insufficiency as to exocrine function as well as the endocrine low insulin function so will be interested in finding out more about the enzymes.

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Consult with your endocrinologist first.

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1 reply
kamama94 | @kamama94 | Sep 28, 2022
In reply to @jenatsky "Consult with your endocrinologist first." + (show)
@jenatsky

Consult with your endocrinologist first.

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@jenatsky, thanks except I don't have one - can't meet the extra copay. Sad but it is what it is so have to let PCP, Neph, GI peeps handle it.

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dia2ne | @dia2ne | Sep 29, 2022

I'm on Creon also, 24000 UNT., Started 4 mo ago. Not a lot of info from my Dr but confident in his years of experience & so glad to have found some digestive relief. Will ask more questions after get results of gluten blood work I had to redo as his directions before last test weren't specific enough for me. Sorry I don't live near enough to give Dr recommendations.

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irr4et | @irr4et | Sep 29, 2022
In reply to @lon "Hello High fiber and diarrhea do not go together. Go low fiber. How much weigh have..." + (show)
@lon

Hello
High fiber and diarrhea do not go together. Go low fiber. How much weigh have you lost? Where are you losing weight, arms, stomach or elsewhere? Continue to eat low fat food but you must get enough calories or you will lose more weight.

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I have EPI also. Weight loss is what drove me to a gastroenterologist. She said supplement enzymes are not strong enough and prescribed Pertze. I think it’s pretty much the same as Creon. I’ve been on it plus HCL now for 6 Yrs and it works well. If I miss taking it for any reason, I will drop two pounds.

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1 reply
lon | @lon | Sep 29, 2022
In reply to @irr4et "I have EPI also. Weight loss is what drove me to a gastroenterologist. She said supplement..." + (show)
@irr4et

I have EPI also. Weight loss is what drove me to a gastroenterologist. She said supplement enzymes are not strong enough and prescribed Pertze. I think it’s pretty much the same as Creon. I’ve been on it plus HCL now for 6 Yrs and it works well. If I miss taking it for any reason, I will drop two pounds.

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Sounds like you have control of EPI. As I do not. Do you have daily headaches or have you lost muscles in your arms? (My symptoms)

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janf27 | @janf27 | Dec 10, 2022

I was just diagnosed with EPI & have been in limbo for days wondering why Medicare did not have my Rx listed Zenpep, insurance declined it & my inaccessible dr has not responded to me nor pharmacy. So I asked cost w/o insurance $4000+ with Good Rx $3000+ New to all this discussion? Or is this a blog? hoping post will get me back to EPI thread. I was trying to switch from oldest to newest when all I got was a list of other conditions but no EPI? Need help thx much Jan

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3 replies
Mentor
John, Volunteer Mentor | @johnbishop | Dec 10, 2022
In reply to @janf27 "I was just diagnosed with EPI & have been in limbo for days wondering why Medicare..." + (show)
@janf27

I was just diagnosed with EPI & have been in limbo for days wondering why Medicare did not have my Rx listed Zenpep, insurance declined it & my inaccessible dr has not responded to me nor pharmacy. So I asked cost w/o insurance $4000+ with Good Rx $3000+ New to all this discussion? Or is this a blog? hoping post will get me back to EPI thread. I was trying to switch from oldest to newest when all I got was a list of other conditions but no EPI? Need help thx much Jan

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Hello Jan @jan27, Welcome to Connect. Not sure which EPI discussion you were viewing. Here is a list of the EPI discussions:

-- New to exocrine pancreatic insufficiency (EPI): What helps?: (sorted to show newest posts at the top)
https://connect.mayoclinic.org/discussion/exocreine-pancreatic-insuffencyepi/?commentsorder=newest#chv4-comment-stream-header
-- EPI meds expense: https://connect.mayoclinic.org/discussion/epi-meds-expense/
-- EPI - Need Advice: https://connect.mayoclinic.org/discussion/epi-need-advice/
-- EPI abdominal cramping: https://connect.mayoclinic.org/discussion/epi-abdominal-cramping/

You can also click on the Help Center link on the menu near the top of any Connect page on the right side. It's a little harder if you are using a phone to view Connect because you have to slide the menu to the left to see the Help Center link. Here's the direct link - https://connect.mayoclinic.org/help-center/

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1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | Dec 10, 2022
In reply to @janf27 "I was just diagnosed with EPI & have been in limbo for days wondering why Medicare..." + (show)
@janf27

I was just diagnosed with EPI & have been in limbo for days wondering why Medicare did not have my Rx listed Zenpep, insurance declined it & my inaccessible dr has not responded to me nor pharmacy. So I asked cost w/o insurance $4000+ with Good Rx $3000+ New to all this discussion? Or is this a blog? hoping post will get me back to EPI thread. I was trying to switch from oldest to newest when all I got was a list of other conditions but no EPI? Need help thx much Jan

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Hi @janf27
I moved your message to this existing discussion that I think you were looking for:
— New to exocrine pancreatic insufficiency (EPI): What helps?
https://connect.mayoclinic.org/discussion/exocreine-pancreatic-insuffencyepi/

Here you can read through the comments and easily connect with other member living with exocrine pancreatic insufficiency (EPI) like @lon @irr4et @dia2ne @kamama94 @jenatsky @anniegk @ruble429 @mialeigh @carolannd and more.

I think @kamama94 @jenatsky may have some insight about drug coverage. I hope you hear from your doctor or pharmacist soon.

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1 reply
irr4et | @irr4et | Dec 10, 2022

I can really identify bc I have EPI too bc I ate gluten the first half of my life bc I didn’t know what gluten intolerance was and the damage it does to ppl who cannot digest it. My father was that way too but before he died, he never did learn about the damage gluten can do to our pancreas so he had EPI too but was never diagnosed. He died a sickly person sadly, bc his Primary Care Dr never mentioned this to dad or referred him to a gastroenterologist specialized in Celiac and Gluten Intolerance.
I have been on Pertze which is same as Creon, for 5 years. My insurance doesn’t cover it so it costs me $1200/yr or more.
And I take two Hydrocloric Acid capsules/meal also. It helps us break down (digest) proteins just like Protease in Creon and Pertze do. What it costs for us to just stay alive is unfortunate isn’t it?

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