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fyoung
@fyoung

Posts: 3
Joined: Jun 25, 2018

Severe Exocrine pancreatic insufficiency (EPI)

Posted by @fyoung, Sun, Jun 24 11:02pm

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.

REPLY

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.

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

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

@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.

@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

@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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