I read Liz’s blog and her journey with exocrine pancreatic insufficiency (EPI) resonated with my own experience. The one difference – since the diagnosis, seven years and counting – I continue to calibrate my enzyme dosage. Here is my experience with pancreatic enzymes.
My first (diagnosed) acute pancreatitis attack happened in 1998 and I was diagnosed with chronic pancreatitis in 2013 following severe weight loss and multiple years living with digestive issues (such as dispersed and oily stools). When I began taking pancreatic enzymes in 2013 (without a formal diagnosis of EPI), I had no understanding of lipase, amylase or protease and their role in digesting food. I was prescribed 5000 lipase units per meal but was provided no education on how and when to take enzymes as it related to the duration of the meal.
My digestive symptoms began to improve within two months but I was not gaining much weight. Around this time, I moved to a new city for work and my new gastroenterologist (GI) increased my dosage to 10,000 units per snack and 24,000 units per meal. My endocrinologist also calibrated my insulin dosage based on carbohydrates and correction ratios. Together, these regimens helped me gain weight and my digestive health was steady for a while.
My current state is confusion. I don’t know which doctor to listen [to] and the right dosage for the meal I am eating.
Then I started facing constipation which caused so much epigastric discomfort that I thought I was having a pancreatitis flare-up. The discomfort sent me to the ER. My GI then asked me to reduce my enzyme dosage to help ease constipation. He explained that my pancreas was likely producing some enzymes and given my low fat diet, I could reduce the dosage of enzyme supplements.
Over the last two years, I have consulted with two different GIs who suggest different PERT dosing based on FDA guidelines (meal size and body weight). It is clear that there is not a one-size-fits-most approach to PERT dosage; below are some reflections based on my experience with EPI and PERT dosage.
My Reflections
What is important to you? What are you hoping to achieve with PERT?
In my case, my first experience with pancreatic enzymes helped me stabilize my digestive symptoms. However, it was also important for me to gain weight so I worked with my doctor to pursue that goal. In someone else’s case, primary goals for enzyme therapy might be managing fatigue and/or holding food or controlling nausea or something specific to their lifestyle.
Be Prepared for Changes in How Your Body Responds to PERT
I have noticed that my body’s response to enzymes has changed over time. I have gone from suffering digestive issues to steady state to acute discomfort over the years and tried to calibrate my enzyme dosage through these phases. Through this journey, I have been vocal with my care providers to share my symptoms and ask for help.
Ask Specific Questions
Now as I seek to calibrate my dosage again, I know what questions to ask my doctor: timing of enzymes, dosage of enzymes in relation to meal duration, fat content, and my pancreas function; and ways to check if I am on the right dosage.
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