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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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@lisalucier
The first time I tried Creon, after a diagnose of atrophic pancrea and many years of having GI problems, my doctor prescribe a high dosage of Creon. I felt great for a few days, then I got a terrible pain underneath my left rib, I couln't walk strigh, and I had blood in my stool. I quit taking it and the symptoms went away.
Besides the spectraZyme I take PURE ENCAPSULATIONS Pancreatic Enzyme Formula, so far very good. Dosage: lipase 17,500 USP units, protease 110,000 USP units, amylase 120,000 USP units.
I take the SpectraZime with breakfast, I feel I need less support, the Pure Enc. for lunch, which is a big meal for me, and SpectraZime for dinner again.
Creon is more than tricky for me, I am afraid of it
Thank you for your interest
Mercedes
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1 Reaction@lisalucier Thank you for the warm welcome. I've found- I still feel like I'm in a Creon learning curve-that regulating the Creon dose is an art, one that I haven't mastered. I occasionally still have digestive episodes (euphemistically speaking) that fall outside my understanding of what I may have eaten that may have caused the problem, or if it's a dosing issue. Was it hidden fat that tipped the scales, or too much protein at one sitting. Did I take too much Creon or not enough? I'm coming to the conclusion that it may never be 100%, and that I should keep aiming for 100% but be content with something lower.
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1 Reaction@dianehrdr Hi Diane. You may want to read the reply I just made to Lisa Lucier about my Creon experience so far--it's been a few months. My doctor said that the fact that I eat healthfully is probably what kept me going, since only a small portion of the nutritional value of the food was digested by my stomach. I always looked great and had lots of energy but I was running on empty.
@dianehrdr Part 2, I realized that I didn't address the book question.
simply put it's a rice porridge similar to congee. There are a lot of recipes on line for it. I make it in my Insstantpot. The ratio is a little rice to a lot of water, and it cooks for a long time until the rice "explodes". The jook is starchy and smooth and miraculous for settling my stomach. I sometimes add chopped tomatoes to it at the start, or some chicken powder for added flavor. Sometimes some mushrooms. Sometimes I add some white meat chicken (at the start or finish). I think it's delicious and I eat an entire pot over the course of a day and it always works for settling my stomach.
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1 Reaction@tslayden - did you end up talking to your health care professional about a different dosage of the pancrelipase (Creon)? Have you decided whether to try to peppermint oil or the low Fodmap diet?
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1 ReactionMy NP has just recently decreased my dosage of Creon because I have lost some weight. I have considered the low FODMAP diet but right now I am concentrating on getting my A1c down because it is in the pre-diabetes range. I am trying to eat very little carbs. I haven’t considered peppermint oil although I drink peppermint tea.
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2 Reactions@jewill
I'm new to this site and have just recently been diagnosed with EPI after several years of intermittent chronic diarrhea, etc. I'm on Creon and it seems to help but I have been totally exhausted all the time and don't know if it's the Creon , diet, or WHAT? I'm 78 and have been healthy up to now. I've stopped alcohol ( wine) completely and I really miss my evening 2 glasses of white wine but no it is a huge contributing factor. I'm wondering if this disease is hereditary because my father had Pancreatitis at 50.
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2 ReactionsI too, have an overall feeling of fatigue, long term, since before and now after 2 years of treatment (creon, supplementation, healthy diet, food sensitivity testing and elimination, minimal alcohol). I still experience regular diarrhea and am always at least 20 lbs underweight. I have found more frequent, smaller snacks/meals are best, but can't seem to address the weakness, loss of muscle, weight loss, fatique...
I have stopped seeking professional advice due to lack of information on subject and in the case of wellness practitioners, lack of sustainable finances. I do, however, learn from sharing information on this chat site.
I have no family history, have not been diagnosed with Pancreatitis (MRI), although my symptoms began about a year after a serious bout of Covid.
I feel like I am not providing enough advice, but also am willing to share some nutritional advice from my nutritionist if anyone is interested.
I too, would like to know what you have been prescribed.
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1 ReactionHi @dianehrdr - sorry that you have to deal with overall fatigue on a long-term basis. That, and the treatment you've been through, sound tough to deal with. And it sounds like some of your symptoms continue. Ugh.
I'm sorry to hear that you've found professional advice lacking. I am, however, encouraged that you've learned from members here on Mayo Clinic Connect.
Are you saying you are finding that practitioners outside of traditional medicine are quite expensive?
If you do have some nutritional advice you think would help other members here with EPI, will you share some of that?