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New to exocrine pancreatic insufficiency (EPI): What helps?
Pancreatic Disorders | Last Active: 3 hours ago | Replies (206)Comment receiving replies
Welcome to Connect @jewill, and thank you for sharing your history,
EPI can go undetected and be so frustrating, especially since it can occur due to both pancreatic and non pancreatic causes, and the symptoms are very similar to that of other GI disease.
After doing some research, I found a detailed journal article on EPI, here: http://bit.ly/2hgkNAo; and I'm tagging older members @rickzaner, @codelue, @inhiscare2, with the hope that they will join in the conversation, as they have some experience with the drug Creon.
Also, @mkenn, @saucy, @concernedmtnmom, since you have all discussed malabsorption, do you have any suggestions for jewill?
@jewill, do you take any vitamin supplements in addition to the Creon? Have you been diagnosed with any other conditions that could be linked to EPI?
Replies to "Welcome to Connect @jewill, and thank you for sharing your history, EPI can go undetected and..."
@kanaazpereira I was diagnosed with EPI in March of this year and started Creon therapy after about a three-week delay in a pharmacy being able to find a supply. I had a kind of sudden onset of symptoms of diarrhea/loose stool and then constipation, seesawing back and forth starting in mid-January 2026. The Creon's ability to help with the loose stool/diarrhea (very urgent, I might add) has yet to be seen. I switched medical providers after having a colonoscopy and being told that I hadn't prepared adequately. This was in addition to not having met the GI physician responsible for my care but working through his nurse practitioner. She ultimately told me to eat whatever I wanted since the creon didn't seem to be helping. I have a new care team who seem to be more involved, and they reduced my Creon dose to one 36,000 IU capsule with meals and none with snacks if they are low-fat. Additionally, they are having me take Miralax every day. I have pretty much relied on AI to come up with a diet for me, and I am so frustrated with it, because it's so repetitive and bland. Eating at nice restaurants and ordering anything I wanted was one of my life's pleasures, and now that's gone. I also used to enjoy a glass of wine when dining out, and that is also forbidden. I am to have another colonoscopy and endoscopy with ultrasound to see if there is damage to the pancreas or to what extent there is. I had a consultation with a dietician, but she wasn't very helpful, as she hadn't heard of PEI and gave me some suggestions about a pancreatitis diet, which might be similar. I also have requested a consultation with Barnes/Jewish Hospital in St. Louis, as it's a major medical center within a day's drive. They might provide a second opinion or verification of my Springfield, IL physicians' diagnosis. I feel like I'm a prisoner of my symptoms and hope I can gradually become accustomed to such a bland diet or be able to isolate foods that cause gut irritation. I have lost almost 30 lbs. since this started.
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@kanaazpereira
My name is Mercedes Wise.
I have been diagnose with pancreatic atrophy with cysts (12). That is the cause of my low pancreatic elastace.
I have tried Creon and I can not tolerate it. So I found SpectraZyme from Metagenics and it works for me. It has been hard to calculate how much to take, I use different doses for each meal, depending on what I eat.
I will like to know more about this subject
Regards
Mercedes
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