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New to exocrine pancreatic insufficiency (EPI): What helps?
Digestive Health | Last Active: Jun 28 7:16pm | Replies (117)Comment receiving replies
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.
Replies to "Hello, I am new to this board and I am looking to get any and all..."
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.
Many 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
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!
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.
Has anyone been tested for EPI more than once.
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?
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!🙂
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.
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?
Connect
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.