Does anyone have EPI (Exocrine Pancreatic Insufficiency)?

Any one here had a bile duct issue that causes their EPI?

First you need to see a nutritionist who specializes/has experience with this issue. There is a lot of information on the internet. Your pancreas is not producing sufficient enzymes to digest the food in your stomach when eat, thus the Zen pep/Creon/Panarese, etc. In addition to the compromised digestion, which causes malabsorption issues, you possibly face nutrient deficiencies. My personal instructions were: include, daily, vitamins K/A/D/Coq10/E/B complex/Good multi. Most of these are absorbed better with some kind of oil in your meal. Even taking all these, I still had a ferritin (part of your iron) and B2 deficiency, which manifested in my tongue and it has taken three months of supplements for those to clear, not to mention the medical tests to rule out oral disease of some kind. The iron deficiency developed due to not eating beef or pork. You are advised not to eat pork or beef, as they are harder to digest than chicken and fish and can cause extra stress. I eat a lot of vegetables, dried beans, grains, avocado. Have found that raw vegetables. slaw, salad do not digest well for me, so I only eat cooked foods, or experience pancreas discomfort while the raw items digest. Eliminate processed foods - fast food, chips, candy cakes, canned soups, frozen foods, sugar, as little processed as possible. These have little nutritional value and are harder to digest. No fried foods. I use Daves Killer and Ezekial breads, as they (especially Ezekial) have more nutritional value (for store bought bread) than most of the others. If you aren't familiar with Ezekial it is found in the frozen section, due to lack of preservatives and I thaw, and keep, it in the refrigerator. I use Vegenaise instead of mayo, Violife plant butter and cook with only olive oil. Eat a lot of tune and salmon salad and have a vegetable soup I make and freeze, so I always have something on hand. Have a crustless quiche each day for breakfast, with broccoli, peppers and onions

All of this information is trial and error for ME and working with a nutritionist. I am also pre-diabetic, so my diet is a little more restricted on the carb side. This diagnosis can be overwhelming at first, as they all can, but when you start working with it, you will figure out what works best for you. Good luck and find a good nutritionist and read medical articles about this disorder.

Has anyone heard of ampullary stenosis? I had an MRCP looking for strictures in my biliary system that might be causing my EPI. They are calling it possible ampullary stenosis. Seems like the same thing as a stricture. Haven’t seen my GI Doc yet, but there seems to be a non-invasive surgical procedure that can possibly fix it.

MRCP was ordered yesterday by a Hematologist. A test I never heard of along with a special MRI that requires a certain MRI machine.
My gastroenterologist referred me to Hepatologist.
It matters which gastroenterologist you see.
I tried a local Dr he did not want a face to face only colonoscopy and endoscope. His report sd no Barretts, no sign of Chron's. I asked him on portal if I had a magical healing. He did not like being questioned. He only took 3 pictures and 2 biopsies. Sd for me to return to Tampa Gastroenterologist.
I did stages of Barrett's, fistula in esophagus, small bowel Chron's, gastroparesis.
Follow your instincts, change Dr if no answers.

Anthem charges me $649 for 36000units. 8 per day.

If you are on Medicare (supplement), do you mind if I ask which insurance carrier you have? The drug insurer I use charges me $663.00 per month and that's after I pay an initial $1,500.00 for first prescription. I would love $368. Thanks

I was miss diagnosed by a doctor for EPI . I was recently treated for a SIBO and this was the reason why my gut was low enzymes. Apparently my pancreas is working fine. Now I no longer need to take CREON. So what do I do with this medication ?? I have almost 500 pills of 36000 unit capsules. Can I donate them to a charity/hospital ?? I would hate to dispose of something that is so valuable to others?

I had the MRCP MRI and it has been read by 2 Radiologists and a GI Endoscopic Specialists and they all of different opinions. One says I have a cyst on my pancreas. One says I have Chronic pancreatitis, which I don’t have any of the symptoms. They all don’t think I need EUS, but requested it as I am so afraid of Pancreatic Cancer. I also have dilated bile ducts and one person said ampullary Stenosis. Wanted a stint so that I don’t have to take
Enzymes, but then heard you have to have new stints every 3-4 months. Is there no good solution? Can’t afford the Creon. AbbVie is so slow to get back to me about help with the cost.

I take Thorne Pancreatic Enzymes dietary supplement which was recommended by my Nutritionist. She also recommended Visbiome GI Care high potency probiotic which I also take. I don't have a diagnosis yet, still working on it. I had a colonoscopy last week and everything was normal. I wish they had taken a tissue sample. Now I am trying to get in for an office visit with the GI. My symptoms are frequently runny stools and bowel urgency. I have adopted the low FODMAP diet and that seems to be helping.

Hello. I understand what you are going through as I am in a similar situation with an elevated bile duct. I can relate to feeling nervous about it. I recently had an EUS that didn't show anything, so now I am scheduled for a second EUS at Virginia Mason. My stomach issues led me to visit my doctor, which then resulted in a CT scan and an MRI. There is a lot more to my story that I could share with you, but I mainly wanted to reach out to let you know that you are not alone. I am keeping you in my thoughts and prayers during this time.