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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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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@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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@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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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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@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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@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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@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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@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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@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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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.

REPLY

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
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