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

Hi@fyoung. I have chronic pancreatitis and have had a distal pancreatectomy, so I have experienced EPI since about 2006, but more severely since 2014. I have taken Creon for about ten years and I do believe they aid in my digestion of food and I have had some weight loss with a more restrictive diet in the last few weeks. I am trying to exist on a gastroparesis diet, but it is no fun. Of course being bloated, in pain, and nauseous 24/7 is even less fun. I also use Boost drinks and eat a good bit of fat-free yogurt. I also make smoothies with protein powder as I now consume very little meat. Adding powdered milk to smoothies will also add calories. Because of diabetes, I still have to be cognizant of my carb intake, but it has really been difficult to onboard enough some days and I have had to reduce my long-acting insulin by about 20%. I don't know if any of this is helpful. I guess the goal should be to simply take in as many calories as possible to stabilize his weight and then try to continue that in hopes of some weight gain. How tall is your husband? Does he have anything other than the frequent bowel movements that create obstacles to eating?
Best wishes,
Gary

Jump to this post

Hi@fyoung. I have chronic pancreatitis and have had a distal pancreatectomy, so I have experienced EPI since about 2006, but more severely since 2014. I have taken Creon for about ten years and I do believe they aid in my digestion of food and I have had some weight loss with a more restrictive diet in the last few weeks. I am trying to exist on a gastroparesis diet, but it is no fun. Of course being bloated, in pain, and nauseous 24/7 is even less fun. I also use Boost drinks and eat a good bit of fat-free yogurt. I also make smoothies with protein powder as I now consume very little meat. Adding powdered milk to smoothies will also add calories. Because of diabetes, I still have to be cognizant of my carb intake, but it has really been difficult to onboard enough some days and I have had to reduce my long-acting insulin by about 20%. I don't know if any of this is helpful. I guess the goal should be to simply take in as many calories as possible to stabilize his weight and then try to continue that in hopes of some weight gain. How tall is your husband? Does he have anything other than the frequent bowel movements that create obstacles to eating?
Best wishes,
Gary

Jump to this post

<p>I was diagnosed with endocrine pancreatic insufficiency EPI after having a reaction to estrogen cream and 2weeks later a reaction to reclast infusion a BISPHOSPHONATE.dr didn't check my chart for allergy to phosphates nor tell me to have any invasive dental work done first .i had diarrhea for over 200 days lost from 130 to 103 lbs .my teeth have started to break off i have a lot of muscle loss i went from dr to dr none knew what i had finally a dr ran fecal test and started me on creon and told to go on a low fat diet.i did research diet ,timing for creon and food ,supplements,exercise.i put my food in blender to get more food in me it is hard to chew.i have done organic for 40 years .I would like to find a Dr in austin tx that knows more about EPI .supplements ,creon and organic food and keeping stress down works I still work but i am 78 so i wont be able to do that much longer. I would love to hear from any one with any informed on EPI or malabsorption.</p>

Jump to this post

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.

Jump to this post

Im just looking for those in similar situations, what were the outcomes what were the diagnoses. In 2014 I started to have gallbladder attacks that would last for 2-3 weeks. It took until 2017 to have gallbladder removed there was no sludge, no stones it was functioning at 2%. I had the gallbladder surgery woke up in excruciating pain not like surgical pain continued to have more intense "attacks". A month later they found 2 tears one at the pancreatic duct and one at the liver duct. I had an ercp where stents were placed for 12 weeks. And dealt with pancreatitis and elevated liver enzymes during that hospital stay. Doctors said I shouldnt be having pain but I was. Pain continued, and could feel the placement of stents. I then had pocketing of bile where my gallbladder fossa was. An interventionist radiologist then drained the sac. The sac filled again and because it was too smalk it wasnt drained. I have been in and out of the hospital for years over 12 hospital stays averaging 7-10 day stays. All tests have come back normal (CT,MRI,Bloodwork) other than a little gastritis during an endoscopy and a cyst on liver thats been there for years. Ive had a small bowel study which showed that everything goes through my small intestine within 14 minutes. Ive been dealing with chronic fatty stools diarrhea up to 10 times a day-which lead doctors with a dx of exocrine pancreatic insufficiency (EPI). I was placed on a high dose of creon which helped with diarrhea but pain has remained. Pain is becoming so severe that I cannot leave my home, it wakes me up from sleep, Im having excruciating 8-10 out of 10 pain at the tip of sternum, into epigastric region under right breast and directly behind epigastric region in my back. Heartburn is getting worse. Ive lost 30 pounds since the end of January, and my GI isnt concerned because Im overweight. I just truly need insight or point me in the direction of things that can be looked into. Im at my last straw, my life, family, and career have been impacted for years.

Jump to this post

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.

Jump to this post

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.

Jump to this post

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.

Jump to this post