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New to exocrine pancreatic insufficiency (EPI): What helps?
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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Please HELP! I was just diagnosed with EPI and the score for my confirming test was 145 and my GP wrote my Rx as 2 pills with each meal & 1 with snack up to 10 pills a day. I am taking Creon 36,000 and I see many people need to adjust the pill count depending on the type of meal. I am so confused about treatment and I am recovering from a fragility fracture in my femur which required surgery in May of this year. I was 51 years old when I fell onto a 1” thick cushioned mat and it was a true “Help! I’ve fallen and I can’t get up” moment. Any advice on how to try to figure out what dosage I right for me would be appreciated.
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1 Reaction@luckylissa
From what I have read here on this forum, I don't think there is a set way to figure out the dosage. I would try to find a doctor who deals with EPI. I see a gastroenterologist, and he has changed my dosage three times since he put me on Creon 36,000 capsules. I still have episodes of diarrhea. I hope that after I see a nutritionist, I can get my diet to help with the diarrhea. I hope you find a plan that helps you.
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3 Reactions@luckylissa Welcome to Mayo Clinic Connect! You signed onto this support group at just the time as 1/2 of us are confused (including me) and wondering how much creon we should take. I also take 36,000 of Creon and, yes, I don’t know how much to take at every meal and if fresh fruit are Creon-free. I just don’t have the time or energy to figure out the amounts of creon i should take with every meal. I’m doing OK, just not stupendous, and that is OK, too.
Check the EPI internet posts and /or the Creon pages and talk with your GP and then, make up your mind to do your best.
To all the members of this discussion, I’m just giving luckylissa some friendly advice on how to deal with a confusing situation. That’s all!
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1 Reaction@becsbuddy Thank you for letting me know it’s not just a one size fits all situation. I downloaded the PERT Pilot app on my phone and it seems like it could be helpful for tracking pill count and results for each time I eat. I feel like I will get to become a dietitian by default to master this condition. One of the hardest thing to learn is to never leave home with some pills with you. I’ve only been on them for a few days and realized how you don’t realize of often you encounter surprise food opportunities until you are watching everyone else eating and you can’t because you didn’t think you would need to have pills.
@fred41 Thank you for the information. I am hoping I can get to see a GI because currently my GP thinks it is just a simple as take 2 pills with each meal and it will work just fine. She is so confident that she doesn’t need to send me to a GI and that 2 pills no matter what will work that she sent in the Rx with 3 refills snd said come back in three months. I have CT scan on Thursday and I am hoping that something shows up that makes her think maybe a specialist should handle this.