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

Hope the AB's work faster this way and you will be out and about soon! Again, please keep us up to date when able.

@kanaazpereira @gman007 Discharged yesterday and have my blood numbers under control for now with white count rising to about 5800 yesterday taking me out of the danger zone . . . the IV antibiotics certainly much different than orals . . . looked at the hospital operation vs. one pill at home and said no comparison . . . meet with my oncologist on Monday for continuing updates and a chemo session on Monday May 1st . . . consented to a colonoscopy next week to try and find the root cause of weight loss and am considering another opinion at Mayo in Waycross for an overall re-evaluation

Great to hear that your WBC responded so quickly. Will definitely say a prayer for your meeting and and chemo treatment. I hope you can have a peaceful weekend with little anxiety about Monday and what lies ahead.

thanks @gman007 / appreciate the concern / not to overanious about the meeting because that is turning into a weekly thing for blood measurements / the big day will come a week after chemo 4 when we do a PET scan to measure the achieved results for the first time / the other issue is ongoing and its the diarrhea not being under control / its figuratively sucking the life out of me / down about 35 pounds since January / ughhhh and not sure where we're going with it / maybe next week after the colonoscopy we'll have a positive correction plan / praying and hoping

I sure hope so! I think it figuratively and literally sucking the life out of you. I could certainly use the weight loss, but don't want to achieve it that way. I am sure it has also sapped your strength, which makes everything else more difficult. Just know that we are all thinking and praying for you and I hope that provides the smallest comfort. If you are not back on here before, please let us know about your PET scan. Gary

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.

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

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.