I was diagnosed with EPI: Need advice on diet, other management

@becsbuddy It took 4months before I was diagnosed with EBI. The first 3 months I didn’t eat and I ended up in the hospital due to my potassium level was a 2.7 and then when they took a huge amount of blood and tests they couldn’t figure out why I had non stop diarrhea. I then had a colonoscopy but not before my potassium had dropped to 2.3 and they gave me liquid potassium to bring it up enough to sedate me. Then they told me I had colitis and inflammation. When the tests came back I didn’t have colitis. That’s when I had to call every few days to get to see her. I am on Creon but she didn’t explain anything just put the prescription in the portal. I still have diarrhea but it has slowed down.

@diggy1302 I sincerely owe you an apology for my thoughtlessness in my previous response to you. I hope you’ll forgive me! It sounds like no one paid any attention to you and had no idea what EPI was. My doctor was not much better. He said hello while I was still goofy from the sedation I was given and that was the extent of his “professionalism.” I never saw him again and the physician assistant was supposed to take care of everything. Well, she didn’t so I found a new doctor.
As for Creon, I learned everything from this discussion. Everyone talks about changing your diet, but I haven’t done so. I try to take my creon when I should and eat a healthy diet, but that is all I’ve done and I’m doing very well.
Please try to get a new GI doctor! The Medical Society in your town, city or area can give you some names. Call their office and find out if they treat EPI. If so, make an appointment.
Ask it there is a dietician they recommend, so you can make an appointment. Make sure you explain what has happened to you and that you really need some help. Start a journal in which you’re going to write everything!
If you have more questions, I’ll try to answer.
The Cleveland Clinic has some good information on EPI. The Mayo Clinic has not posted yet.

You must take creon/zenpep at the proper dosage for your weight or ideal weight. Sounds like you are not. The specs are on the creon site. EX: 180# person max recommended dose is 36000 x 5 depending on severity. Drs often under prescribe. Clearly you are severe aka max dose needed. These pills are way less enzyme count than a healthy person and require enough pills to help digest food. Always take the all the med immediately after your 1st bite, which prevents it from being washed out too soon. You cannot live healthy without a diversified good diet. With EPI Vitamins help too. And don’t drink non-dairy milks because they contain calcium carbonate which damages creon/zenpep. FYI, my diet is I can eat anything w/o high sugar content…T1D

I was diagnosed with EPI about 8 months ago. I had my gallbladder removed in September of 2025 and that didn’t solve any stomach issues. Then I found my current GI doctor and after listening to me and hearing my history he had me take a stool test. Elastase result was 29 1/2%. I was prescribed Creon but I’m still having some issues. I also take Cholerstyramine for oral suspension. I don’t take it as directed (two times a day) but I do take it after a diarrhea episode. I’m still trying to find a frequency that works for me. I’ve been having severe diarrhea issues since I was I. Middle school (I’m currently 75) so my life had basically been a love/hate relationship with Pepto.
I’m feeling some better and the weight loss has slowed (it was kind of nice while it lasted, I could lose 30 more lbs) but I’m still having occasional diarrhea episodes. Bottom line is I always need to be “prepared”. Here’s my question if anyone is having or has had the same issues, will I ever be able to wear normal underwear again? I’m really wanting to talk to someone with similar issues. ????

@joandelray Hi and I’m sorry you got this awful disease! When i first got it I had no clue of what on earth it could be. I was still trying to do things with friends and trying to figure out what foods were causing trouble. Couldn’t figure out any cause! My neurologist thought it was an allergy to the main drug for my autoimmune disease so she ordered a colonoscopy. That showed EPI. The GI doc never said anything, but finally a PA did. I figured that since the doc never said anything that it wasn’t serious so I waited several months to take the creon. Mistake! I still haven’t gotten up the nerve to wear regular undies, but hope to soon, it does take awhile for your intestines to catch up, but they will. It’s not fun and you never feel like you can confide in anyone. I’m doing OK now and you will, too.

I was diagnosed with EPI in early March. Pretty shocking since I always considered myself healthy. I am taking Creon. 1 36000 pill with meals and 1 or 2 12000 pills with snacks. My biggest challenge is that I have been losing weight even though I am eating 150 grams of protein per day. I had a CT scan and endoscopy along with blood work and so far no cancer that they can see. Just wondering where I can communicate with people with the same condition—as I never heard of EPI before I got it

Hi @skip522 - you are in exactly the right place. Welcome to Mayo Clinic Connect. You are participating in a discussion in the Pancreatic Conditions group called "I was diagnosed with EPI: Need advice on diet, other management."

If you want to look for other EPI discussions, do a search on the group home page https://connect.mayoclinic.org/group/pancreatic-conditions/, or start a discussion you would like to have on that same page.

Here is some Mayo Clinic information on autoimmune pancreatitis, including pancreatic exocrine insufficiency (EPI) https://www.mayoclinic.org/diseases-conditions/autoimmune-pancreatitis/symptoms-causes/syc-20369800.

Details on testing related to EPI are found on the Mayo Clinic Laboratories site https://news.mayocliniclabs.com/gastroenterology/malabsorption/exocrine-pancreatic-insufficiency/.

I'm hoping that other members in this discussion will chime in with thoughts on your losing weight despite eating 150 grams of protein daily, as well as how they manage the diet choices that work with EPI. Please meet @becsbuddy @joandelray @venture @pennie225 and many others here.

What has your doctor said about your weight loss? If they have given feedback and advice on that, what did they say?

@lisalucier

Hi Lisa: Thank you for your response. The doctors quite frankly have not been very helpful other than that they did a CT Scan and an endoscopy. They are the ones who said to eat more protein. They were not helpful with the dosing of the Creon, but fortunately Creon has a lot of good information online and they even sent me vitamins and a copay card for the medication. I have gotten most of my information from ChatGPT. I just saw a naturopath doctor who is going to try to start helping and he suggested that I take a higher dose of the enzymes. My condition seems to be more of an exception to what I have read in that my problems are more constipation than the other. More enzymes see to exacerbate that condition. Hoping to hear from people or even a person who has been on my journey and has done well.

@skip522 Hi. I am very recently diagnosed with EPI from a Fecal Elastase test. Since I’m also dealing with lung cancer and see a cancer dietician, he was the one who suggested the test due to my gastric struggles and he also asked my oncologist to prescribe Creon since my GI doctor wasn’t helping me. I want to suggest to you to see if your primary doctor can refer you to a dietician as my dietician is very knowledgeable about EPI and enzyme dosages. Also, Facebook has several private groups on EPI and you can find others there dealing with this condition and their experience has been helpful to me. I’ve only been on Creon a week but it’s going well but I continue to have guidance on Creon and food from my dietician. I hope this information helps you. - Rose