EPI - Need Advice

Posted by january1101 @january1101, Feb 8, 2019

I have had colitis, Ulcerative Colitis and Diverticulitis for years. I am also very prone to C Diff infections. A year ago in December, I became extremely ill and after several months was finally dx’d with EPI and Severe Pancreatitis. Eighty to ninety percent of my pancreas has died. I have lost over 100 pounds. I am malnourished. I am very embarrassed to admit that I must wear diapers in case of breakthrough accidents. I was given Creon and told to take 2 with a meal and 1 with a snack. When I asked my Dr. how big a snack is, she didn’t know. She finally said anything bigger than a slice of bread needs 2 capsules. I eat low fat, but she told me that my system is so fragile, that I should avoid fruits and vegetables unless they are over cooked and the fibers are broken down in them. She also told me Ensure has too much fat, so I can’t have that. I asked to see a nutritionist and was told there are none here. I was very over weight because of meds, so I’m not underweight, but I’m almost there. I weigh 234 pounds and am almost 6 feet tall. I don’t know what to eat or drink, except for water. My Dr. agreed that the only thing keeping me alive was my sugar intake. There are no research hospitals nearby that I can go to for help. Can you please help me? I would be ever so grateful and will try to help the community as I can. I honestly feel if I don’t get some help that I am going to die and I am a fighter. I want to live life to the fullest.

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january1101 | @january1101 | Feb 8, 2019

I forgot to add that to my amazement, I am not diabetic. My A1C is 5.4.

Ethan McConkey, Moderator | @ethanmcconkey | Feb 9, 2019

Hi @january1101 and Welcome to Connect. You determination to keep fighting is inspiring in the midst of what must be a difficult time.

I wanted to introduce you to @julie1976 @gaylea1 and @hgarm have all mentioned pancreatitis before and may be able to offer you support as you look for solutions.

@january1101, you mentioned that you can more or less only eat sugars. What all are you eating then? If you have to avoid fat and foods too high in fiber?

january1101 | @january1101 | Feb 10, 2019

@ethanmcconkey Thank you so much for writing to me. I can't tell you how much I appreciate it. I have been drinking soda and eating carbs or cinnamon rolls. I had less leakage that way. Then when I found out I am malnourished and lacking in several vitamins and minerals, I started drinking water and trying to eat some protein. It makes the diarrhea worse, but I have to have it in my system.

vlf123 | @vlf123 | Nov 13, 2022

Wow, I just saw your post and it is 2022. I hope you are ok and have figured out how to handle your EPI. I have been diagnosed with chronic pancreatitis (although I never had any pain with it) and with EPI. I would recommend the Mayo Clinic since they are very thorough, and there are many causes for EPI. I was told the opposite of what you were told. I was told to eat lots of fresh fruits and vegetables because if they are uncooked they have their own digestive enzymes to help you digest them. I also use honey instead of sugar since it digests starches, sugars, and proteins. Avocado helps digests and metabolize fats. I am not on enzyme replacement since I had a bad reaction to Creon, but haven't tried Zenpep yet due to the costs. Anyway, I am, like you, a fighter. I believe their are more ways to cure this disease than claimed. Keep hope.