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New to exocrine pancreatic insufficiency (EPI): What helps?
I was dignosed with e p i. Exocrine pancreatic insuffency in 2015 after having a severe reaction to premarin estergen cream then 2 weeks later i had an even more sever reaction to an infusion of reclast it is a biphosphonates l am severly allergic to phosphates, dr did not check for that. i had diarrhea lost 20 lbs destroyed 90 % of my pancreas dr gave me creon 3600 2 with each meal low fat diet that is all the information i got from him did research on web for diet and supplments .need a dr in austin tx that knows more about e p i would apprecate any info on this thank you jewill
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Correction - I DID NOT take the Ensure and Creon together tho it may read like that. The lengths of time of weight loss and taking the additives is also estimated.
Sorry for any confusion.
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1 ReactionI was diagnosed with EPI in November 2023. I take ZENPEP because Medicare won’t cover anything else. Over the past month, things are getting worse again and I spend most of my time in bed with an upset stomach. I generally eat one meal a day because it’s about all I can tolerate. I am on Rebylsus to control my diabetes as well as my weight. I have lost more than 70 lbs in the past year because of EPI. My doctor did a colonoscopy to rule out Crohns or any other gastrointestinal diseases (my sister has had Crohns for more than 50 years, so we needed to make sure that was not the problem). Anyway, my doctor is not helpful at all. I have seen him on telemed twice, and then again for the colonoscopy. He hasn’t given me much feedback and doesn’t return phone calls in a timely manner. I am in Farmington Hills, Mi. Does anyone know of a good responsive doctor in this area? Your help would be well appreciated
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1 ReactionI was just diagnosed this year. I had pancreatitis 5 years ago and have not had a flare up since then. But since then I have been on a "be kind to pancreas diet". Now I'm not sure how I need to change my diet. I got the Creon pills (very expensive w/ insurance). Can I just take them when I know I will be having a heavier meal which happens on the weekends and not take them during the week?
I'm sorry to hear how you are suffering. Finding a good doctor who responds when called is very important. My doctor was very easy going about the diagnosis and didn't give me much guidance. I am going to my internist now and hope for a more comprehensive discussion.
Looking for others who have Crohn’s and subsequently diagnosed with EPI. I went from 175 pounds to 150 in a year’s time after my third small bowel resection and am having trouble putting on weight. Started Creon which seems to help diarrhea. Any other suggestions?
I have provided my story before and will gladly do so again. I know what it is like to be flailing around in the dark after an EPI diagnosis. I also am pre diabetic, so follow a low carb diet. However, everything I eat is also low fat to be kind to the pancreas. I take 36,000 of CREON with every meal and one with snacks. I eat very few large meals, mostly small ones. Eat a lot of peanut butter and avocado to provide calories. No beef or pork and am close to being burned out on chicken. I can tolerate low fat cheese, use Veganese instead of mayo (you will not notice the difference in taste) and Violife plant based butter. Have found that I cannot have more than 15 carbs at a time, or glucose soars, so I eat Ezekiel bread (the healthiest on the market I have found) and Dave's Killer thin sliced bread. Eat a lot of vegetables, but they have to be cooked, as I can feel in the pancreas if I eat too much raw. I make a crustless quiche each week with mostly egg whites (too much fat in egg yellows) broccoli, onion, spinach and red pepper. Take vitamin K, K2, E, A, D3, Coq10, multi, B complex and extra B2, as I had a low count and added Iron recently due to low Ferratin. It is important you take CREON, or whatever digestive supplement prescribed, to help your food digest and allow you to absorb the nutrients you can. Malnutrition is one of the biggest problems with EPI. Oh yes, my treat is Okios Triple 0 yogurt and I eat 2 - 4 of those each day. The only non sugar additive I can tolerate is Stevia, all the rest send my glucose soaring. I throw in a teaspoon of olive oil, just out of a spoon and directly down the throat to help with fat. Hope this helps and this is a big adjustment and took me about a year, but it can be done, and you have plenty of support on this website.