Diagnosed with EPI. Taking Creon 36000. 3 every meal for about 2 months. Have not seen any improvement. I see a Gastro doctor. Any advice on a second opinion to see a Pancreatic specialist at the Mayo in Rochester Mn. I live in the South. A long way away.

I’ve been taking Creon for a few months, as a result of Crohn’s. My elastase test showed a level of 129. It has helped tremendously. Prior to taking, I had terrible odorous gas most of the day and oily diarrhea. I also lost 25 pounds since my third small bowel resection in April 2023. My symptoms have abated substantially. Creon is a miracle drug for me! I’m still having trouble gaining weight back, but at least I’m feeling good most days.

RJ Coach, Do you know what your elastase level was? The lower it is, it would make sense the higher the dose of Creon you need. There’s also a possibility that you might have another digestive problem like Bile Acid or a coexisting food intolerance like gluten or lactose contributing to the problem. I would ask your GI dr to consider and test for any other issues that could cause your symptoms if that hasn’t already been done. Good luck and let us know what you find out please. We are all learning from one another here. Since you live in the south have you considered Mayo in FL or AZ?

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 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’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.

Mayo clinic in Rochester, Cleveland Clinic? I would check your local university hospital clinic first. Most require a referral from your pcp or specialist.