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

I was diagnosed with EPI post COVID in 2022, lost 60lbs in 1 month and put on pancreatic enzymes.
My triggers are high fat ingredients (mainly good Omega 3 fats) that I can't do so I am currently doing Colestid (bile salt diarrhea) that they use post gallbladder removal and it works wonders.

Hi, @dianehrdr, and welcome to Mayo Clinic Connect!
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or yes, a hug! Thank you

I have been diagnosed with exocrine pancreatic insufficiency, leaky gut, IBS, SIBO and although I have been to multiple doctors, wellness practitioners, follow the fodmap diet and have eliminated many foods after food sensitivity testing, have ongoing abdominal pain, diarrhea, constipation and overall poor health. I also take many supplements and have always enjoyed a healthy diet.
I guess I'm looking for a new direction, or perhaps the results of more recent research...or maybe, a miracle!

I have recently been diagnosed with severe EPI. Does anyone with EPI live in the Twin Cities? Does anyone else go to Mayo Clinic from the Twin Cities?

It would it be nice to form a support group with others who are experiencing EPI. Please let me know if you're interested? ☺️

I may know one. If you can message me I can find his name but I don't know how close he will be as he is in Oakland Cty IIRC; around 14 or 15 mile

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.

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'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.

I 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?