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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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grannydee | @grannydee | Feb 12, 2023
In reply to @susanh824 "Hi, I’m in the process of finishing up 72 hours of high fat eating in preparation..." + (show)
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Hi, I’m in the process of finishing up 72 hours of high fat eating in preparation for the fecal elastase and other stool testing on Tuesday. Right now, my doctor suspects that I have either EPI or chronic pancreatitis. What surprises me after forcing down all that junk food is that I don’t have diarrhea. In fact, I feel extremely bloated and constipated, despite taking Miralax each of the last two days. Does the constipation rule out those two conditions? Last week, I ate a couple of pieces of pizza, and had many bouts of diarrhea the next day, My most recent abdominal CT scan showed that my pancreas looked “atrophic.” Yet I seem to bounce back and forth between constipation and diarrhea.

I’ve lost 60 lbs unintentionally and have no appetite. I fill up quickly. Pain is in the upper left to middle area of my abdomen, and radiates into my back. Any ideas?

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I’m rooting for you! 😉

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susanh824 | @susanh824 | Feb 13, 2023
In reply to @susanh824 "Hi, I’m in the process of finishing up 72 hours of high fat eating in preparation..." + (show)
Profile picture for susanh824 @susanh824

Hi, I’m in the process of finishing up 72 hours of high fat eating in preparation for the fecal elastase and other stool testing on Tuesday. Right now, my doctor suspects that I have either EPI or chronic pancreatitis. What surprises me after forcing down all that junk food is that I don’t have diarrhea. In fact, I feel extremely bloated and constipated, despite taking Miralax each of the last two days. Does the constipation rule out those two conditions? Last week, I ate a couple of pieces of pizza, and had many bouts of diarrhea the next day, My most recent abdominal CT scan showed that my pancreas looked “atrophic.” Yet I seem to bounce back and forth between constipation and diarrhea.

I’ve lost 60 lbs unintentionally and have no appetite. I fill up quickly. Pain is in the upper left to middle area of my abdomen, and radiates into my back. Any ideas?

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My elastase was 51, so apparently I have EPI. I got the results at the same time my doctor did, but he hasn’t called me yet to make it official. My biggest problem now is constipation. I am taking Senna, and hoping it will help. Thanks Grannydee and Linda for all your support. There is some relief in getting the diagnosis, even if it is not a good diagnosis.

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shar1120 | @shar1120 | Nov 8, 2023

Anyone diagnosed with EPI (digestive issues)

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scottzee | @scottzee | Nov 8, 2023
In reply to @shar1120 "Anyone diagnosed with EPI (digestive issues)" + (show)
Profile picture for shar1120 @shar1120

Anyone diagnosed with EPI (digestive issues)

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I have had EPI since 2018 . I also have Barrett’s Esophagus and Diabetes. I am trying to find a diet that works for all of my needs. So I just found a dietitian that will hopefully help me. I use a glucose meter to help keep track of my blood sugars. I am not on insulin, so I have to buy the monitor myself but it’s worth the expense as I try to keep my A1-C around 7.0. The CREON medication works well for me. And the habit of taking pills as I eat gets easier over time.

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