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This condition is so difficult because it impacts every day. My 27-year-old daughter was diagnosed with EPI in November 2021. She had lost 40 pounds she did not have to lose and felt and looked terrible. She took a leave of absence from work because of the fatigue and just trying to live with it. She went through a period of feeling sorry for herself that she would have to live with this for the rest of her life.
It has been a journey but she is now at a normal weight and able to participate in life again. She is on Creon and at first was not taking enough. She has since learned how many she needs to take with a meal. Sometimes she needs to take some at the beginning and some in the middle. She did get prescription assistance through the manufacturer.
In addition, she suffers from occasional nausea and abdominal cramping. The gastro added one of prazole meds and that has helped. It is still a challenge and some days are worse than others but she is doing well.
Hope you find a point where it is not so intrusive in your life.
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drs22,
Thank you for your encouraging note. It's good to hear you're daughter is doing so much better. It gives me hope!
I had joined the group below on Facebook before joining this group. It's a private group that you have to join. I've found a lot of helpful information from it so far to help me learn about EPI and what diet/treatments work and don't work. But, of course, it's all dependent on each person, trial and error until you find what works for you.
Living With Exocrine Pancreatic Insufficiency (EPI) Support Group
I'm waiting for approval from myAbbVie Assist for Creon assistance, which is going to take some time yet. Since I'm going downhill fast with the weight loss/malabsorption, I saw on the Facebook group that people have tried two different pancreatic enzymes with success (Vital Nutrients Pancreatic Enzymes 1000mg and Pure Encapsulations Pancreatic Enzyme Formula) from Amazon. I ordered the Vital Nutrients on Saturday and started taking them yesterday. Last night was a little rough on my stomach, but today it seems better. I hope I get some relief soon and start absorbing nutrients and stop or slow the weight loss.
Thank you again for your kind words. All the best to you and your daughter.
Linda