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@jlmp

Diagnosed one week ago and SO many questions. Prescribed very expensive Zenpep. Can I eat as normal while taking these capsules? Need info on dosing, foods I can eat without dosing, etc. Doctor no help with this. He just says take one capsule before a snack and two before a meal.

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Replies to "Diagnosed one week ago and SO many questions. Prescribed very expensive Zenpep. Can I eat as..."

Wonderful! Thank you so much. I have ordered from Amazon. After I’ve substituted the pricey Zenpep with the Vital enzymes, I will update.

You may find the YouTube Video by Dr Steven Freedman, Professor of Medicine, at the Harvard Medical School helpful concerning how to determine the dosage rate for the EPI enzymes. The title of the tutorial is "Dosing Pancreatic Enzymes for Adults".

EPI takes a while to get used to and doses etc figured out. I suggest you keep a journal of diet and dose of enzymes initially. A low fat diet helps a lot. Amazon has pancreatic enzymes that are almost exactly the same as the Rx but much cheaper. The lipase dose is what counts. Rx = 40000 units
Vital Care OTC=36500 units
A negligible difference. Be sure to read the fine print on label as there are different doses. I take one capsule with lunch and dinner but know others take more. It’s trial and error at first. Good luck getting your symptoms under control!

I want to alert people that a EPI diagnosis may not be EPI, but a SIBO instead. I have been taking CREON for 6 years. I went through a 3 day poop test. It was a test that told me not to take CREON for a few days before, so when the results came back, I still had a low enzymes, but I also had a SIBO. Next was a breath test. I had ( IMO) methane gas in my small intestines. That was the reason for my low enzymes. 2 weeks of antibiotics and 2 months of probiotics. My latest poop test (1 day) came back NORMAL. I have enzymes now and am no longer in need of CREON !!!

Has anyone here had a stricture in their bile duct that has caused their EPI? I will have an MRCP soon to see if it is a stricture. Then, I’m assuming, if there is they will try to stint it with an ERCP. I am assuming that it was caused when I have my gallbladder removed. Wondering is this is a fix for the EPI and I can go off CREON.

I’m not sure but theoretically it makes sense that a stricture could block the pancreatic digestive juices from entering the small bowel, and opening it up with a stint could restore the flow and resolve the problem. I hope that works for you if there’s a stricture in the duct!

My son, age 29, was diagnosed with chronic pancreatitis with necrosis. He has been taking zenpep for quite a while. He takes 3 before each meal and 2 before snacks. They do seem to help but we had to play around with them to find the best time to take them. Whether it was 30 minutes before his meals, as soon as he started to eat or right after. The creon or zenpep are pancreas enzyme replacements. If any of you are on Facebook, join as many groups on Pancreas disease you can join. They have been a life saver to us. Good luck to you all.

Thank you.

Does anyone have PEI as a result of Crohn’s? That’s my case. I have good days and bad days. Creon has definitely helped the gas and fatty, odorous stools and diarrhea but since losing 25 pounds since having a third a small bowel resection a year ago, which is, around 15% of my body weight, I am having trouble putting any of that weight back on. Any suggestions? And once we have PEI, will we always have it and have to stay on Creon forever, or is this something that can be cured, for want of a better term?

Thanks mizz, I joined FB group, waiting on acceptance now.

I was diagnosed over a year ago and it is my understanding from the gastroenterologist my EPI is not curable (section of pancreas is atrophied), so CREON forever. My big hope is a generic form of this medication, as it takes up a large part of my income. Does anyone know if there is a generic coming on the market soon ,or has one recently hit the market? I am talking about the prescription form, not over the counter.