Severe Exocrine pancreatic insufficiency (EPI)

Posted by fyoung @fyoung, Jun 24, 2018

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.

I don’t have EPI; I have severe gastroporesis and lost about 40 pounds and was down to 90. My Dr. told me to drink 2 Boost Plus a day, in addition to meals. In one year I am back up to 133. He was shocked. I hope this may help.

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Hello @fyoung and welcome to Mayo Connect. I am a volunteer mentor with Mayo Connect and I appreciate your posting about your husband's problem with EPI. I am sorry to hear of his weight loss and continued problems. This has to be concerning for both of you.

We do have an ongoing discussion on Connect regarding EPI. Here is a link to the current discussion, https://connect.mayoclinic.org/discussion/exocreine-pancreatic-insuffencyepi/?utm_campaign=search. Many of our other members have posted about using Creon. As you read what some of the other members have posted you will undoubtedly learn how they are coping and treating this disorder.

I would like to invite another mentor into this discussion, Gary, @gman007. I would also like to invite the following members, @huntsvillehank @jewill @bink @rickzaner, @codelue, @inhiscare2 who have specifically mentioned the use of Creon.

Also, here is some information from the National Pancreas Foundation regarding EPI, https://pancreasfoundation.org/patient-information/ailments-pancreas/exocrine-pancreatic-insufficiency-epi/ and an article from Everyday Health, https://www.everydayhealth.com/hs/exocrine-pancreatic-insufficiency/epi-treatment-steps/

If you are comfortable sharing more, please let us know if your husband has had any other diagnoses that led to the EPI? For example, has he had pancreatitis or some other disorder of the pancreas?

I look forward to hearing from you again.

Teresa

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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

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@coquifoife

I don’t have EPI; I have severe gastroporesis and lost about 40 pounds and was down to 90. My Dr. told me to drink 2 Boost Plus a day, in addition to meals. In one year I am back up to 133. He was shocked. I hope this may help.

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Yes this helps thank you, but one follow up question. Did you have diabetes and if so were you or your doctor concerned about blood glucose levels with the 2 boost plus? Should we just concentrate on gaining the weight and not so much as to how? Also, can I ask what specifically was your symptoms with gastroporesis because I do not believe it has anything to do with being able to not absorb fat, protein, or nutrients from food, but more with muscle movements in stomach which cause pain.

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@gman007

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

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Gary; thank you for your response and yes it is somewhat helpful, but because we are still unsure of what is happening I am also still very confused.
My husband is very, very healthy and can pretty much eat anything he wants. He has no allergies and there is no food that causes him bloating or pain. He has never had any bouts of pain from his pancreas. His only issues are the loose, pale stools, and very frequent bowel movements with occasional gas and occasional oily stools. He is not on any special kind of diet right now mainly because we are not sure if he should be avoiding fat, protein, or carbs. We are just trying to avoid sugar as he does get spikes of high blood glucose levels, but only spikes up to 140-150. We have been trying a high calorie daily intake of 3000 calories at least per day. He seems to lose 1-2 lbs every 3 months, but has not gained any weight for the past 8 years. He is 5'8". I am getting concerned with his weight, but doctors don't seem to be and I don't really understand why. Just like being overweight can be unhealthy isn't being underweight just as bad too? Your information was helpful and I realize everyone has a different set of circumstances, so for us it is really hard to figure this out

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@gman007

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

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@fyoung, that has to be confusing and concerning. I do believe you are correct about weight loss being as much a reason for, let's say investigation, as weight gain. There may be very benign reasons for it, but I would want to explore the possibilities. I have read a couple of recent studies that suggest carrying a little extra weight (not obese) increases mortality: http://healthland.time.com/2013/01/02/being-overweight-is-linked-to-lower-risk-of-mortality/ . This is one of the ones that included a significant number of participants. I don't know how old your husband is, so this may not be as relevant, but I know as age decreases one's activity, food consumption often goes down, and then it is very difficult to do what he is doing now for calorie intake. I would appreciate his problem for about a month, but I have had a great deal of difficulty eating in the past two months and have dropped about 14 pounds and 24 this year, so I probably should not wish for that. I would like to know what happens with the increase in caloric intake, please? I am not sure who besides his PCP should do some frontline tests, but that individual should be able to point him in the right direction if he is not going to investigate. May I ask how old your husband is? You mentioned a CT scan; would it give the study reader a look at his pancreas? Many people who have p[roblems with their P are asymptomatic, i.e. Steve Jobs. I am not suggesting that anything that dangerous is at play here, but some of the symptoms sound very familiar to someone with lots of P issues.

I might also add that he may be far less concerned than you. I was once one of those males who did not concern myself with doctors and did not talk about things that were going on with my health because I was bulletproof and big boys don't whine. If you learn anything or have other questions, I would really like to hear about your findings.
Blessings,
Gary

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@christina315

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.

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Hi @christina315 that must be so frustrating being unable to find a diagnosis.

I wanted to introduce you to @cookiegnias as they have experience with undiagnosed stomach pain.

Back to you @christina315, have your doctors considered other medications for your pain?

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@ethanmcconkey

Hi @christina315 that must be so frustrating being unable to find a diagnosis.

I wanted to introduce you to @cookiegnias as they have experience with undiagnosed stomach pain.

Back to you @christina315, have your doctors considered other medications for your pain?

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I was on a low dose of gabapentin but didnt notice any difference in pain. Ive been prescribed low dose of hydrocodone but that hasnt done much for the pain, it does bring me down a pain level. The G.I doesnt really take my concerns seriously and I think his motto is, if we cant see something theres nothing there.

Liked by ajstaley

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@christina315

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.

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@christina315
I know you are very frustrated. There are many stomach and esophagus problems that could cause your symptoms. You need experts… like the Mayo or one of the other research teaching hospitals.

My suggestion with problems of diarrhea is to try a probiotic.I tried some cheap ones and even the yogurt with live culture and they did not help. Align was recommended to me by my husband's cousin. It is a little pricey, but worth it to me. My husband gets it for me at Sam's Club and stocks up when they have it on special. (the store brands do not work for me.. Align has some secret ingredient that works for me) My mama started having problems too.. she is 91 years old now.. and I started giving them to her too. She had her gallbladder out many years ago as I had. She only had problems occasionally… mostly if she ate fried foods. With me it made no difference what I ate, but I had a Nissen wrap at same time I had my gallbladder out.

I had to have stomach surgery because of a repair of the Nissen wrap (mesh put in wrong place…. long story). Was referred to Mayo. They were concerned about my 38lb weight loss. 2 surgeries (undo of Nissen wrap and gastric bypass to fix the soiding hernia) at Mayo and hopefully final surgery in 2015 at Mayo .. an open abdominal surgery that fixed the complications I had of the previous surgery.

I have achalasia and Barrett's esophagus. All which can cause abdominal and chest pain. The open abdominal surgery I had is very difficult to recover from and was told I would probably have the chest pain the rest of my life.. and not to worry I am not having heart attacks. The pain is the worst when low weather fronts come through.. the stronger the front the stronger my pain is. I take low doses of oxycodone and when really bad I take a small amount of diazepam (valium). Have to be very careful with what meds you mix with oxycodone or any other narcotic.

I would suggest you keep a journal and write down everything you eat and what time. Notate the times you have the increase pain and where it isand when you have diarrhea. What activities were going on… walking, standing, sitting, bending, sleeping, sports activity, etc. Sometimes this can indicate a pattern that can be helpful.

Best of luck,
Zaroga

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Hi! It sounds like you have an excellent health care team☺️! I was losing 10 pounds per week until I requested Creon. It slowed my weight loss considerably; in fact, I need to watch myself not to gain it back! I started with the lowest dose, but quickly realized I needed to go up to the next level. Since then, I can eat a very restricted diet with no negative digestive side effects, as long as I take my Creon first! Best wishes to you and your husband!

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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.

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