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

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?

I 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

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.

I began Creon last Fall for EPI. I too lost 30# in a period of about 16-18 months thru which I stabilized @ 165 then started going down until I reached 145 @ which time Gastro's PA tested stool and found fatty stool indicating EPI
I THINK(?) I started on Ensure OTC drinke then went to 12000 Creon 4 x daily. I gained 2-3 pounds by Xmas but asked Dr if I could cut back Creon to see what happens and he said try 3 x day after which I seemed to lose the 3# that I gained plus went to 140#.
I found an EPI diet and tried it but I gained no weight so I went to Gastro and told him what was oging on as I had been eating EVEYRYTHING when I began the Ensure and Creon w/o a 'diet.'
He said he DID NOT WANT ME ON A DIET but to eat everything I felt like eating just to see if I could gain some weight and go back to the 4 Creon.
I went back to 'no diet' and have gained about 2# in last 4-6 wks tho I have little appetite as I did last Fall. I usually have oatmeal in AM w/ Banana, some kind of meat for lunch (even bologna sandwich on whole wheat once or twice!) and 4 oz burgers at times for lunch/supper or Aldi's braised pork pieces, etc. Pizza too if I want. IE I have no 'diet per se.'
I don't always eat a 4th 'meal' but was told by PA it was OK to take piece of toast w/ 3 table spoons room temperature apple sauce for last 'meal' of day.
I will eat green beans with 3-4 oz of meat at a 'meal' or sweet potatoes and am thinking fruit cocktail might be OK also. I do eat eggs and bacon or sausage patties at times for 'lunch' but basicall brkfst is Quajer Oatmeal usually w/banana. I also like Kashi cinammon wheat with coconut almond milk which I bought today.
I don't know if I'm helping anyone. I am thinking however, 'Did I gain the first few pounds on the Ensure????

Creon has 'seemed' to have increased my normal pulse rate (usually in mid 70's but for sometime now in mid 80's 90's and a few times 100) which I read Creon can do tho my BP is in safe range for 80 y.y. Also lately lots of gas. (Then again, I did eat 3-4 tsps Potato salad for 3-4 days w/some meals so that might have contributed!)

I know I have lost much muscle as well and can understand the concern others may have when they hear"Pancreas" but the fact that the Gastro wanted me to eat everything I wanted to see if I could absorb some calories seemed to alleviate the severity of the EPI at least at present.

Then again, there is always the thot of 'What if I quit Creon (which my BC pays all but $82 for) and try the Assure (which is actually MORE expensive per 'dose' than the Creon!) to see if I gained more weight from the Assure than the Creon in the first place????????

And what about my resting heart rate IF I wanted to go to health club and start walking in a pool lane and trying to swim a little in between lengths of walking?

Will kicking up that pulse rate be dangerous?

Seeing the Gastro day after tomoro and will report anything interesting. Also seeing heart Dr Aug 1 to ask question I posed above re: Creon and pulse rate. (Had 75% intense heart ischemia 5-6 yrs ago but it collateralized self and swimming 1/2 mile per day at that time induced no negative effects.

So many questions / concerns. Weeks to see one doctor and more weeks to see the next and few if any seem to have the time to listen to your recent histories and make any diagnosis before just sending you off to another type Dr in their system.

And that might be the most troubling part of seeing Drs at all. 🙁

Take care - Look for sunshine - I also believed that nature Herself is one of the greatest 'healers' since it goes IME right to one's soul/

I too have a lot of bloating and gassiness, and have not found a reliable solution. I'm wondering what others have found that works.
I have discovered that a small amount of real sugar is much better than stevia which makes the gas and bloating ever so much worse.

Thanks, laker 67. It sounds like you are doing well and that encourages me. I will definitely try to get insurance to reconsider. They do cover for diabetes so there's hope! I'm so thankful that they cover the Creon - what a shock to see the full price.