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

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

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?

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?

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"

What State do you live in?

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.

I wish I could get my gastro to diagnose ANYTHING.
Be grateful you know what you are battling and you can create a Plan with the help of a caring new provider.
God Bless you

Yall are so fortunate to have a provider who will recommend a Non-Pharmaceutical. I have completed everything I was advised to do. Still no diagnosis or relief. I'm tired of practitioner Monopoly. Each one sends you to someone else ... another and another ... nothing determined. I asked a question of my GI following an Endoscopic US. He made remarks in the notes about seeing issues other than what he was looking for. I questioned as to how I should follow up.
WELLLLLLLL ... he hid those notes in some file that appears, name only, that I cannot access. I'm 70 ... getting pushed over the cliff. I have found a couple of independent practitioners that I am going to try to see.
God Bless you and your wife.

I too have recently been diagnosed with severe EPI and got samples of Creon and Trulance. There is no way I can afford the cost of these drugs, do not know what I am going to do. I have a CT scheduled w/contrast. I've had pretty bad symptoms of EPI 2 -3 years ago but no one listened, but now confirmed WOW!!!!

Hi, to make a long story short, my wife had a Pancreatectomy, and was left with 25% of her pancreas, back in 2011. We could not afford the Creon, she got some samples but not enough.
For a period of time we toughed it out. A few years later, her gastro dr told her about an alternative. It has been on the market for a few years and still not very many people know about it. It's a practitioners exclusive made by Metagenics, called SpectraZyme PAN 9x.

There is also a second with 2x the lipase, call Pan 9x ES
Since this is my first posting, I am not allowed to put their site up, so just do a search for Spectrazme with either the Pan 9x or Pan 9x ES and that will get you there.
As subscribers' through her dr, we received a discount. Way more inexpensive than Creon and has the same functional ingredients. To any and all who read this, go to the site, check it out. If anyone here is currently taking it, let me know. We finally were approved for Croen this year, through MyAbbvie (the direct manufacturer), so we have 2 bottles sealed of the ES (90 count each) we do not want to toss or give away to a corporation. Pix of our bottles is attached. I have had them posted online for less than half of the discounted price. So I found this site. In hopes of finding others who need it.

Questions, just inquire.