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

Posted by jewill @jewill, Dec 6, 2016

I was dignosed with e p i. Exocrine pancreatic insuffency in 2015 after having a severe reaction to premarin estergen cream then 2 weeks later i had an even more sever reaction to an infusion of reclast it is a biphosphonates l am severly allergic to phosphates, dr did not check for that. i had diarrhea lost 20 lbs destroyed 90 % of my pancreas dr gave me creon 3600 2 with each meal low fat diet that is all the information i got from him did research on web for diet and supplments .need a dr in austin tx that knows more about e p i would apprecate any info on this thank you jewill

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@fyoung

Hello, I am new to this board and I am looking to get any and all information on EPI. My husband for the past 2 years has lost 20lbs. He has always had a good metabolism and has always been on the "fit" low body fat side. The past 3-4 years he was diagnosed with diabetics type 2; AC1 6.6, but with diet he has been able to control the blood glucose levels and has lowered his A1C to 6.3. His weight in 2016 was 140lbs and he maintained this weight for a long time, but then in the last 2 years he started losing weight and down to 120lbs. His stools are always lighter in color as in lack of bile. Also in the last two years, his increase in bowel movements has gradually increased and more recently in the last 6 months he is experiencing loose stools. More recently in the past 3 months he has oily stools, but not foul smelling and very frequent. His recent fecal tests have shown severe endocrine pancreatic insufficiency and he is scheduled for a CT scan next week. He is not on any medications, feels great, and has no pain. He is going to start taking Creon too. My question is will the Creon help with weight gain and/or are there any other suggestions for weight gain? Since currently this is his biggest issue and he is at a low body weight. We are monitoring his vitamin levels and everything in his blood labs are relatively normal. I am just surprised Dr. is not recommending a specific diet and/or ways to gain the weight. I know we are still in the process of diagnosing exactly what is going on, but I wanted to know if anyone has similar experiences and can give me input on things I can do to get him on the right track fast.

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Once it is established he has epi he will be given a enzyme for his lacking ability to digest fats and absorb certain vitamins. This enzyme must be taken with every meal and probably for the rest of his life unless some temporary and fixable condition can be found. He will gain weight once he starts absorbing nutrients from his enzyme digested food. They might also make sure he doesn't have a B12 deficiency which can be controlled with B12 injections. Work closely with your Doctor and you will get there!🙂

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@anniegk

Once it is established he has epi he will be given a enzyme for his lacking ability to digest fats and absorb certain vitamins. This enzyme must be taken with every meal and probably for the rest of his life unless some temporary and fixable condition can be found. He will gain weight once he starts absorbing nutrients from his enzyme digested food. They might also make sure he doesn't have a B12 deficiency which can be controlled with B12 injections. Work closely with your Doctor and you will get there!🙂

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Thank you for info. I was diagnosed with EPI about seven weeks ago. At the same time I was diagnosed with H-pylori and a bad gallbladder. Completed medication for H-pylori and had surgery for gallbladder removal. Thinking I might need a re-test for EPI as it could possible have been misdiagnosed. What are your thoughts?

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@amandaa

Hi @lon, you'll see that I moved your post to a discussion about EPI so that you can connect with other members. Can you share a little more information about your situation? Do you have EPI?

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Thank you. Yes I was diagnosed with EPI about seven weeks ago. Wondering if I should be re-tested. At the same time I was also diagnosed with H-pylori and a bad gallbladder. Those problems have been resolved and I am praying EPI was misdiagnosed due to having all three at once. Any advice?

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@lon

Thank you for info. I was diagnosed with EPI about seven weeks ago. At the same time I was diagnosed with H-pylori and a bad gallbladder. Completed medication for H-pylori and had surgery for gallbladder removal. Thinking I might need a re-test for EPI as it could possible have been misdiagnosed. What are your thoughts?

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It might be a good idea to be retested if you had a diseased or non functioning Gallbladder as these things can cause similar symptoms. Gall bladder disease or removal can be responsible in part or wholly for a condition called BAM or Bile Acid Malabsorption which can be manifested by, sometimes daily, floating light colored greasy stools that are partially formed or diarrhea. It can be accompanied by bloat and very smelly gas. There can be weight loss as well if you aren't absorbing vitamins well. If it were me, after GB removal I would let my system settle down and get use to the new way of Bile delivery from the liver to the intestines that is now a direct shot versus the metered doses of bile that the now absent GB use to provide once it received Bile from the liver. Your GB when it was working right use to store and meter doses of Bile to the intestines for digestion of fats etc. Without the GB the Bile is directly shot into the intestines 24/7. Alot of people will get loose stools from this until the system adjusts. The period of time this can take ranges from a week or so to months and in some cases years. Some people get lucky and aren't affected by it. So, this is why I think I would be rechecked for EPI

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@anniegk

It might be a good idea to be retested if you had a diseased or non functioning Gallbladder as these things can cause similar symptoms. Gall bladder disease or removal can be responsible in part or wholly for a condition called BAM or Bile Acid Malabsorption which can be manifested by, sometimes daily, floating light colored greasy stools that are partially formed or diarrhea. It can be accompanied by bloat and very smelly gas. There can be weight loss as well if you aren't absorbing vitamins well. If it were me, after GB removal I would let my system settle down and get use to the new way of Bile delivery from the liver to the intestines that is now a direct shot versus the metered doses of bile that the now absent GB use to provide once it received Bile from the liver. Your GB when it was working right use to store and meter doses of Bile to the intestines for digestion of fats etc. Without the GB the Bile is directly shot into the intestines 24/7. Alot of people will get loose stools from this until the system adjusts. The period of time this can take ranges from a week or so to months and in some cases years. Some people get lucky and aren't affected by it. So, this is why I think I would be rechecked for EPI

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Thank you so much for the info and advice. My doctor says they don't re-test for EPI. Any suggestions where I might get re-tested. I contacted another digestive disease center but they will not accept any patient until you have left your old gastroenterologist for at least 120 days.

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@fyoung

Hello, I am new to this board and I am looking to get any and all information on EPI. My husband for the past 2 years has lost 20lbs. He has always had a good metabolism and has always been on the "fit" low body fat side. The past 3-4 years he was diagnosed with diabetics type 2; AC1 6.6, but with diet he has been able to control the blood glucose levels and has lowered his A1C to 6.3. His weight in 2016 was 140lbs and he maintained this weight for a long time, but then in the last 2 years he started losing weight and down to 120lbs. His stools are always lighter in color as in lack of bile. Also in the last two years, his increase in bowel movements has gradually increased and more recently in the last 6 months he is experiencing loose stools. More recently in the past 3 months he has oily stools, but not foul smelling and very frequent. His recent fecal tests have shown severe endocrine pancreatic insufficiency and he is scheduled for a CT scan next week. He is not on any medications, feels great, and has no pain. He is going to start taking Creon too. My question is will the Creon help with weight gain and/or are there any other suggestions for weight gain? Since currently this is his biggest issue and he is at a low body weight. We are monitoring his vitamin levels and everything in his blood labs are relatively normal. I am just surprised Dr. is not recommending a specific diet and/or ways to gain the weight. I know we are still in the process of diagnosing exactly what is going on, but I wanted to know if anyone has similar experiences and can give me input on things I can do to get him on the right track fast.

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Anyone being treated for EPI. Know of any research/study groups by major hospitals? Undergoing enzyme replacement therapy and following EPI diet. However, neither seems to be helping.

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@fyoung

Hello, I am new to this board and I am looking to get any and all information on EPI. My husband for the past 2 years has lost 20lbs. He has always had a good metabolism and has always been on the "fit" low body fat side. The past 3-4 years he was diagnosed with diabetics type 2; AC1 6.6, but with diet he has been able to control the blood glucose levels and has lowered his A1C to 6.3. His weight in 2016 was 140lbs and he maintained this weight for a long time, but then in the last 2 years he started losing weight and down to 120lbs. His stools are always lighter in color as in lack of bile. Also in the last two years, his increase in bowel movements has gradually increased and more recently in the last 6 months he is experiencing loose stools. More recently in the past 3 months he has oily stools, but not foul smelling and very frequent. His recent fecal tests have shown severe endocrine pancreatic insufficiency and he is scheduled for a CT scan next week. He is not on any medications, feels great, and has no pain. He is going to start taking Creon too. My question is will the Creon help with weight gain and/or are there any other suggestions for weight gain? Since currently this is his biggest issue and he is at a low body weight. We are monitoring his vitamin levels and everything in his blood labs are relatively normal. I am just surprised Dr. is not recommending a specific diet and/or ways to gain the weight. I know we are still in the process of diagnosing exactly what is going on, but I wanted to know if anyone has similar experiences and can give me input on things I can do to get him on the right track fast.

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Hi @ruble429 and welcome to Mayo Clinic Connect. You'll see that I moved your post to this discussion: https://connect.mayoclinic.org/discussion/severe-exocrine-pancreatic-insufficiency-epi/
so you could connect with people like @lon and @anniegk
I know mayo currently has research papers out about EPI: https://mayoclinic.pure.elsevier.com/en/publications/staging-exocrine-pancreatic-dysfunction but not sure if they are taking patients for trials.
How long have you been diagnosed?

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@amandaa

Hi @ruble429 and welcome to Mayo Clinic Connect. You'll see that I moved your post to this discussion: https://connect.mayoclinic.org/discussion/severe-exocrine-pancreatic-insufficiency-epi/
so you could connect with people like @lon and @anniegk
I know mayo currently has research papers out about EPI: https://mayoclinic.pure.elsevier.com/en/publications/staging-exocrine-pancreatic-dysfunction but not sure if they are taking patients for trials.
How long have you been diagnosed?

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For about 8 years. Condition has become much worse over past year. Experiencing problems almost weekly and episodes last several days or more. Really impacts my living style. Thanks for the link re EPI. I'll take a look at it. Thanks.

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I was diagnosed with EPI about 3 weeks ago. My CT scan came back clear of cancer, but, showed fatty deposits in my pancreas and what they called ‘wear & tear’ of my pancreas. I asked what that meant and nurse didn’t really know. I don’t see Dr for a couple weeks and she said that he would explain it further. Disappointed that I’m not scheduled for appointment until 5 weeks after being diagnosed. I am taking Creon and that definitely helped, but, mornings can still be a challenge. And, I’ve been getting so many mixed messages on what kind of a diet I should be following. So, I’m mostly wanting to get info on what kind of a diet to follow and what vitamins/supplements to take and a what dosage. I understand that vitamins are very important with this condition.
I have seen people respond to others with these concerns and I will be going onto the sites that have been suggested.
Thank you.
MiaLeigh

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I just joined the group to discuss my new EPI experience but not sure how to post? Maybe this is the way?

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