New to exocrine pancreatic insufficiency (EPI): What helps?

I got diagnosed with moderate EPI in May 2026. I guess I’m lucky I have lung cancer as I see a cancer dietician and he is very knowledgeable about EPI. Based on my symptoms he asked my oncologist to order fecal elastase test and that provided the dx. He also asked my oncologist to prescribe PERT (Creon), which she did. None of this has anything to do with my lung cancer but my GI doctor wasn’t doing anything for me. I now have an appt with a new GI doctor in July. I’m not super hopeful about the GI doc but at least I have the support of my oncologist and dietician. The dietician told me EPI patients are often not prescribed the right amount of PERT. It seems critical to have a professional who has knowledge of this condition. I also joined a Facebook EPI group as I learn from other patients who have this. I’m definitely better on Creon but pretty much stick with my low-fat diet that I started Fall of 2025 after 2 pancreatic attacks. What you eat does make a difference.

You take Creon WITH the meal, NOT 30 minutes before! Also, your weight loss is due to insufficient prescribed amount of Creon. Get a better GI doc. Your doc is a “putz” I have stated facts based on the Creon web site. And have followed their recommendations. I doubt your doc has ever truly completely viewed this site. I am T1D … I must have a proper dosage of enzymes, otherwise I would have dangerous hypoglycemia daily. It took me 3 months to get the proper dosage. My previous GI doc was clueless. But at least I was only on a child’s dose for a month but had multiple times almost passing out from low blood sugars. If you are taking ONE 36000, that’s for someone severe EPI weighing 40 pounds! Get a different Doc.

@skip522 I've been on Creon for about 5 months now and have found the recommended dose to small especially if the meals is going to have some high fat foods or meat. ( I cannot tolerate processed food at all. It makes me feel sick and I have terrible smelling flatulence, zero processed meat, turkey,chicken, pastrami, and so called roast beef. But I have found doubling the recommended dose very helpful.And if s large meal, I'll even take a couple during the meal. I hope you find a comfortable path forward.

Thank you for your response. I looked on the Creon website and went to the provider section and found that my dosage should be higher—as you said. I am hoping that will help me to stabilize my weight without me having to eat like a 300 lb. Football player. I too have noticed that my body doesn’t like processed meat or high fat foods like French fries. Definitely learning as I go but hopeful as there seems to be a lot of people out there dealing with EPI and not very good doctors

It’s a process.. Been doing this for 2 years and still ups and downs. Dosing can be done by what you are eating as well. Be strong and patient!

At 180lb. severe EPI You should be taking 5 x 36000 per meal. You should be gaining weight if your dosage is optimal unless you are an “exercise animal”.
Sounds like you are doing well.
FYI, I found I don’t need to take creon if I drink ONLY A GLASS of fat free lactaid type milk which is common for me vs. water.
The milk having been lactose treated has simple sugars vs. untreated.
FYI: I can eat anything because I am taking the proper amount of enzymes for my weight and calorie intake. People who have issues with certain foods may not be taking an ideal dose.

@venture My fecal elastase test result was 79, and I weigh now about 173, down from a pre-EPI weight of 195 in January. My height is about 5'8/" I think the medical team I'm seeing now wants to try to flush me out in advance of a colonoscopy and endoscope with ultrasound, and they seemed like they were familiar with the disease. I'm running out of local options for GI docs, and will have to travel to St. Louis to find a new batch of good physicians if this one doesn't work out. Thanks for the referral to the Creon site.

FYI- you have the same , height, weight and almost same elastase test as me. I get colonoscopy every 3 years… due to UC. The prep always flushes you out. Thats the norm. If you are taking five creon 36000 with meals, good. Creon 36000 is very good for carb intake. Carbs help you keep your weight and energy levels up.

What is the recommended dose for 135 pounds.

@venture
I appreciate all the feedback. I recently adjusted my dose to 2 36000 pills with each meal and 1 with snack. Looks like I should probably up it even more. I plan on doing that gradually. Not sure what happens if it turns out to be too much—but starting to feel confident that I can get my weight issue in order with increasing my dosage.