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

I was diagnosed with EPI 3 yrs ago with a fecal elastase test of 72. This is considered severe. I also had a 24hour test which was severe as well. I have used Creon and now ZenPep with very little results. If I don’t take it, my gums bleed. My dentist confirms that I have excellent gums. I always have streatorrhea. The enzymes don’t help. My CT scans with iodine drink and contrast shows a great pancreas. So my question is do I really have EPI, or is it something else. Through the years I have increased up to 9 pills per meal nothings seems to help and no doctor understands what this is all about.
In 2015 I was on a cruise ship on the Atlantic Ocean when my appendix ruptured. It took about 8 hours or so to get help my an airlift to the Azores for 5 hours of surgery. I also got sepsis. I have since had 5 surgeries to correct damage and trauma to my abdominal area. I have an appt next week at the University of Utah for more info on this and other issues. I am on ZenPep now but am not refilling due to pricing and not enough help from it. I have tried OTA enzymes from Amazon which didn’t help either.

What State do you live in?

New York. There is a Medicare coverage limit, I am not sure what will happen when I exceed the limit and fall into the Medicare Part D "donut hole"

Please help me to understand this EPI journey that I am now on. I’m feeling overwhelmed, but eager to know more. I’m loosing weight and am very insecure about what to eat, etc. Already having IBS, I’m not new to dietary restrictions, but, I’m feeling isolated and sad. Would you share some of your tips with me?

Hello @jackie951, Welcome to Connect. It's understandable to be overwhelmed when getting a new diagnosis when you have a lot of other things going on. I think you might find this post in another discussion by @stageivsurvivor helpful - New to exocrine pancreatic insufficiency (EPI): What helps?: https://connect.mayoclinic.org/comment/788458/.

Have you talked with a dietician or your healthcare team about your concerns with losing weight and what to eat?

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

This is excellent information! I have some some homework in a positive direction now. Thanks so very much in taking the time to respond. I too am a cancer survivor and like you, I helped start a church/community outreach for cancer patients and their caretakers. Who better than us, should encourage and support others?
Grateful, Jackie

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?

I have IBS C and now ÉPI which has led to lose of weight. Can’t keep weight on - any suggestions? Low fat just leads to more weight lose.

Is the C for constipation? If yes my gi said that goes along with EPI. I have awful problem with C but it may be due to some food poisoning I had in mid 90’s - damage to wall of colon which could’ve caused scarring. All these Yrs I’ve not know why I have this stubborn C until my gi told me it is prob related to the food poisoning. The chronic C has caused SIBO which is addl set of problems. And I have had Fibromyalgia 23 Yrs. Pretty miserable life.
Can u eat Walnut Butter and rotate it with Pecan Butter? They are high in calories. You will need to take two or three Pertze’s plus one or two HCL capsules for sure so u can absorb the carbs, fats and protein in those butters.