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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Hello, I have just found out about my having EPI but no inflammation and my doctor said I could try a more natural enzyme regime as I am mostly vegetarian. Has anyone else had experience with enzymes other than the pharmaceutical ones?

Also, I am reading it is not good to have a high fiber diet? I eat mostly fruits and veggies and legumes with some sheep cheese and yogurt. I always thought my diet was high fiber. Not sure what to do now?

I take supplements and a good daily vitamin so I seem not to be malnourished, if my blood work is correct. I have lost weight and have been dealing with diarrhea for a couple of months. Lots of tests including cat scan and colonoscopy and nothing remarkable seen.

I am so happy to find this group.
Thank you,
Carol

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@carolannd

Hello, I have just found out about my having EPI but no inflammation and my doctor said I could try a more natural enzyme regime as I am mostly vegetarian. Has anyone else had experience with enzymes other than the pharmaceutical ones?

Also, I am reading it is not good to have a high fiber diet? I eat mostly fruits and veggies and legumes with some sheep cheese and yogurt. I always thought my diet was high fiber. Not sure what to do now?

I take supplements and a good daily vitamin so I seem not to be malnourished, if my blood work is correct. I have lost weight and have been dealing with diarrhea for a couple of months. Lots of tests including cat scan and colonoscopy and nothing remarkable seen.

I am so happy to find this group.
Thank you,
Carol

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Welcome @mialeigh and @carolannd. I'm tagging fellow members living with exocrine pancreatic insufficiency (EPI), like @jewill @nanny23 @fourof5zs @lon @anniegk @ruble429 who can share their experiences with diet and taking enzymes either Creon or natural enzymes.

@mialeigh, have you considered consulting with a dietician or nutritionist who specializes in pancreatic disorders?
@carolannd, did your doctor recommend getting the enzymes you need through diet or with supplements, or both?

REPLY
@colleenyoung

Welcome @mialeigh and @carolannd. I'm tagging fellow members living with exocrine pancreatic insufficiency (EPI), like @jewill @nanny23 @fourof5zs @lon @anniegk @ruble429 who can share their experiences with diet and taking enzymes either Creon or natural enzymes.

@mialeigh, have you considered consulting with a dietician or nutritionist who specializes in pancreatic disorders?
@carolannd, did your doctor recommend getting the enzymes you need through diet or with supplements, or both?

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I will be seeing the gastroenterologist this Tuesday. I asked him to refer me to a dietitian or nutritionist regarding a diet for EPI. I’m hoping he gives me this information then and a lot more information regarding the Creon enzymes and supplements that I should be taking. I’m wondering what you were referring to when you mentioned natural enzymes. Are there natural enzymes some people can take instead
of Creon?

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@mialeigh

I will be seeing the gastroenterologist this Tuesday. I asked him to refer me to a dietitian or nutritionist regarding a diet for EPI. I’m hoping he gives me this information then and a lot more information regarding the Creon enzymes and supplements that I should be taking. I’m wondering what you were referring to when you mentioned natural enzymes. Are there natural enzymes some people can take instead
of Creon?

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@carolannd actually mentioned natural enzymes in her post here: https://connect.mayoclinic.org/comment/749529/

I'm hoping she'll post more information about that option.

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@colleenyoung

@carolannd actually mentioned natural enzymes in her post here: https://connect.mayoclinic.org/comment/749529/

I'm hoping she'll post more information about that option.

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I’m hoping so, too. I will ask, also, at my appointment on Tuesday. Natural would be the way to go, if that’s a possibility.

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@colleenyoung

Welcome @mialeigh and @carolannd. I'm tagging fellow members living with exocrine pancreatic insufficiency (EPI), like @jewill @nanny23 @fourof5zs @lon @anniegk @ruble429 who can share their experiences with diet and taking enzymes either Creon or natural enzymes.

@mialeigh, have you considered consulting with a dietician or nutritionist who specializes in pancreatic disorders?
@carolannd, did your doctor recommend getting the enzymes you need through diet or with supplements, or both?

Jump to this post

Thank you, Colleen. Yes, he prescribed Creon but I asked if I could do vegetarian enzymes. He said yes that might work for me. Just started a week ago tomorrow. No change yet. I take ENZYMEDICA Digest Gold. Would love to know if others have had luck with an alternative to Creon? Any suggestions?

REPLY
@carolannd

Thank you, Colleen. Yes, he prescribed Creon but I asked if I could do vegetarian enzymes. He said yes that might work for me. Just started a week ago tomorrow. No change yet. I take ENZYMEDICA Digest Gold. Would love to know if others have had luck with an alternative to Creon? Any suggestions?

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Would love to know if the Enzymedica Digest Gold enzymes eventually work for you. You mentioned that you haven’t noticed a change yet, but, if you could give an update in 2 to 3 weeks or so and let us know if they started to work for you, I would greatly appreciate it. I think natural is always better, if possible. Thank you!

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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.

REPLY
@carolannd

Hello, I have just found out about my having EPI but no inflammation and my doctor said I could try a more natural enzyme regime as I am mostly vegetarian. Has anyone else had experience with enzymes other than the pharmaceutical ones?

Also, I am reading it is not good to have a high fiber diet? I eat mostly fruits and veggies and legumes with some sheep cheese and yogurt. I always thought my diet was high fiber. Not sure what to do now?

I take supplements and a good daily vitamin so I seem not to be malnourished, if my blood work is correct. I have lost weight and have been dealing with diarrhea for a couple of months. Lots of tests including cat scan and colonoscopy and nothing remarkable seen.

I am so happy to find this group.
Thank you,
Carol

Jump to this post

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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@christina315

Im just looking for those in similar situations, what were the outcomes what were the diagnoses. In 2014 I started to have gallbladder attacks that would last for 2-3 weeks. It took until 2017 to have gallbladder removed there was no sludge, no stones it was functioning at 2%. I had the gallbladder surgery woke up in excruciating pain not like surgical pain continued to have more intense "attacks". A month later they found 2 tears one at the pancreatic duct and one at the liver duct. I had an ercp where stents were placed for 12 weeks. And dealt with pancreatitis and elevated liver enzymes during that hospital stay. Doctors said I shouldnt be having pain but I was. Pain continued, and could feel the placement of stents. I then had pocketing of bile where my gallbladder fossa was. An interventionist radiologist then drained the sac. The sac filled again and because it was too smalk it wasnt drained. I have been in and out of the hospital for years over 12 hospital stays averaging 7-10 day stays. All tests have come back normal (CT,MRI,Bloodwork) other than a little gastritis during an endoscopy and a cyst on liver thats been there for years. Ive had a small bowel study which showed that everything goes through my small intestine within 14 minutes. Ive been dealing with chronic fatty stools diarrhea up to 10 times a day-which lead doctors with a dx of exocrine pancreatic insufficiency (EPI). I was placed on a high dose of creon which helped with diarrhea but pain has remained. Pain is becoming so severe that I cannot leave my home, it wakes me up from sleep, Im having excruciating 8-10 out of 10 pain at the tip of sternum, into epigastric region under right breast and directly behind epigastric region in my back. Heartburn is getting worse. Ive lost 30 pounds since the end of January, and my GI isnt concerned because Im overweight. I just truly need insight or point me in the direction of things that can be looked into. Im at my last straw, my life, family, and career have been impacted for years.

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Just a suggestion. Do not lay on your right side. Sleep with a pillow between your knees and ankles. Do not take pain meds within six hours if possible. Never mix extra strength tylenol, diazepam or percocet within six hours. Maybe where your pain is coming from. I will pray for you.

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