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

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

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

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?

Jump to this post

@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.

Jump to this post

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?

Jump to this post

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

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.

Jump to this post