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

I'm an active grandma who was diagnosed with EPI in May 2023. GI doctor was vague about diet and I'm looking for any help. His advice was low fat (how low?), bland (how boring?), low fiber (what a change for me) and I'm trying but need something more specific. I've read and printed lists of food to avoid which MIGHT be helpful, pretty much everything! Nutritionist is not covered by insurance but I will pay the $50 a virtual session for a few visits if they can help - when I can get an appointment. So very thankful that Creon is covered! I think it is helping and now big problem is terrible gas. Diarrhea is much better but the gas! I understand keeping weight on is important and that seems difficult with low fat. I'd appreciate any suggestions and must say that life is still good, just frustrating.

While diarrhea is more common with EPI, there are people like me who experience constipation instead.

I’m on Pertze and doing well except I have to wk g hard to keep on wt, partly bc my family are all sort of thin. Constipation is my big issue. Does that go along with EPi?

After I was prescribed Creon at a starting dose of 24,000 lipase units, I optimized the amount I needed for a specific meal by keeping a daily food journal. The starting dose was calculated using the formula provided by the manufacturer which is based on the patient following the recommended diet predominantly non-fat and low fat. Although the dosing calculator Abbvie has saying for my body mass (120-130 lbs), I should take one 36,000 capsule, the 24,000 capsule has been satisfactory for most meals as I stick to non-fat and low fat fairly consistently.

By keeping a daily food journal noting day/time, type of meal, quantity and fat content and then noting the GI symptoms and stool characteristics 24-40 hours later (the time it takes for food to be digested and excreted by an adult), I quickly identified what meals (fat content, portion size) required more pancrealipase. It did take long to optimize as I kept to a consistent diet the first month. Slowly I began increasing the quantity of type of foods which included some additional fat. Already having a good idea of what was working, it became easy to extrapolate when to add more pancrealipase capsules to keep the GI tract functioning normally.

An oily sheen and stickiness of the stool is likely caused by undigested fats indicating more enzyme is likely required. When taking capsules, I take my first capsule immediately Before or after the first bite and then stagger taking additional capsules throughout the meal. This keeps a consistent level of enzymes in the intestine available to digest the target substrate (carbohydrates, fats, proteins). By staggering, it more closely resembles how a fully-functioning pancreas works which produces and secretes enzymes in response to food entering the intestine and sending a signal to the pancreas by way of releasing a hormone that binds to receptors in the pancreas that more enzymes are needed.

If optimizing by increasing the number of capsules to the maximum suggested by the dietitian is not achieved, the manufacturers and dietitians suggest trying a different Rx brand. Although all the Rx brands are derived from porcine pancreas, they differ in performance within and between individuals as a result of how the enzymes are extracted, processed, purified, concentrated, the time-release coating used and binders and fillers added. For these reasons, one should evaluate different brands if the first one does not perform optimally. I also stick to recommendations of PanCan.org and dietitians of avoiding fats, red meat in moderation and the vegetables that are hard to digest.
https://letswinpc.org/managing-pancreatic-cancer/2019/10/09/pancreatic-enzymes-explained/
https://flatulencecures.com/vegetables-that-cause-gas/
http://media.pancan.org/pdf/patient-services/booklets/Diet-Nutrition-Booklet-Digital.pdf

I’m on Pertze and doing well except I have to wk g hard to keep on wt, partly bc my family are all sort of thin. Constipation is my big issue. Does that go along with EPi?

Thank you for posting this information. I will try especially staggering during a meal.

As @johnbishop mentions in his reply of a detailed response I made recently, I had the experience of EPI and approached my situation in a methodical manner. It was basically keeping a daily journal and fine-tuning my diet at first. The game changer was when I realized I was experiencing EPI and was prescribed a pancrealipase. I was able to optimize the dosage fairly quickly from having recorded observations on what worked for me before medication. I do know of patients having both EPI and another co-morbidity...lactose intolerance, celiac disease or IBS. Through a combination of maintaining a diet of food item that worked and using a pancrealipase in a dosage appropriate for the meal type, they got their GI system back to an acceptable level. When I got my EPI addressed, my quality of live improved significantly. I went from nearly daily bowel issues to normalcy in a very short period of time.

A "go to" person for me was the Registered Dietitian. look for one having the designation CSO (Certification Specialist Oncology). Whether you had a GI cancer or not, the R.D.-CSO has advanced academic training and practical experience in working with GI patients having complex issues. Another good source of information was in calling the Patient Assistance department of the manufacturers of the different pancrealipase products. They are staffed by RN's and RD's and have a lot of knowledge.

The Pancreatic Cancer Action Network has a very informative booklet titled Diet and Nutrition at this link
http://media.pancan.org/pdf/patient-services/booklets/Diet-Nutrition-Booklet-Digital.pdf
Their contact info is 877.272.6226, M-F, 7;000am-5:00pm PT and e-mail: info@pancan.org

The National Pancreas Foundation has a cookbook for free download. It may have suggestions that will work for both EPI and IBS. Their website has contact info and there might be someone to give suggestions on diet and nutrition with the co-morbidities you have. Call 1-866-726-2737 or e-mail
info@pancreasfoundation.org