Does anyone have EPI (Exocrine Pancreatic Insufficiency)?

Thanks for that link. I try to keep my fat intake low and somewhat consistent but I will check this out!

I love this site. Nothing like the actual lived experiencce of patients to provide helpful information. I was not aware Creon did not treat all foods equally, as far as digestion. Thanks for this info. I see my dietitian in a few weeks and will discuss this with her. Going to the online calculator, thanks for posting that.

I could use them
$1100 For me!
Do you have leftovers?

Thank you for your suggestions. Trying to figure out all of these foods. Creon has not helped so far. Doesent seem to matter what I eat. Lost about 25 pounds but it has leveled off.

I tried to get in Mayo Jacksonville. I have been there for Prostate issues. They said they could not accept any new patients in Gastro dept. I contacted Mayo in Rochester because they have pancreatic department. I am going in November. It is going to be an expensive trip from where I am. I hope they can help me. Got to try something.

I have been diagnosed with EPI. I have had ongoing problems for 2-3 years now. Creon is only a hit and miss thing to keep it under control. My life is no longer my own because I can't plan anything. Could getting all the Covid vaccines and boosters, as recommended have caused this? I have been through tons of tests and other than being diagnosed with EPI, via stool samples (twice now). I have had to quit working, missed funerals, graduations, outings with friends...you name it.

I am sorry your EPI has had such a negative impact on your life! I am not aware of any link to Covid vaccines, but there’s so much we don’t know yet about the effects of both Coving infections and vaccination.
I am wondering if your lack of response to Creon is inadequate dosing. My understanding is that some people can require up to 15 caps a day: 3 with each meal and rwo with each snack. I am lucky in that 1 cap for lunch and dinner each controls my symptoms fairly well. Have you been checked for bile acid malabsorption? It’s possible that anoproblem coexists causing the diarrhea. It often occurs in people who have had gallbladder removed. The National pancreas foundation has good information on EPI and the dietary restrictions that help. I hope you get better control so your quality of life improves! It’s a learning process, sometimes lengthy, to manage this condition. A good dietitian might help as well. Hang in there and keep reading posts on EPI on this site. Experienced people with valuable information!

I had my gallbladder removed a long time ago. Bile acid malabsorption, seems to describe a lot of what I am going through. I have doubled my dose of Creon as of yesterday. This morning has been awful. Watery diarrhea, green and metallic in smell. Continued discomfort on right side below rib cage. I am beyond frustrated. This is so not living. Does anyone know if Cleveland Clinic has a digestive department?

I’m sure they do. You definitely need a good GI consult at a specialty level clinic or university hospital clinic.

How much Creon do you take, per meal? My prescription is two capsules, 36,000, per meal and one, per snack.
You definitely need to visit another gastro.