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

Thank you for sharing this information it's very helpful

While diarrhea is more common with EPI, there are people like me who experience constipation instead.

I have to take medications to help with constipation like Amitiza and domperidone.

I'm an active grandma who was diagnosed with EPI in May 2023. GI doctor was vague about diet and I'm looking for any help. His advice was low fat (how low?), bland (how boring?), low fiber (what a change for me) and I'm trying but need something more specific. I've read and printed lists of food to avoid which MIGHT be helpful, pretty much everything! Nutritionist is not covered by insurance but I will pay the $50 a virtual session for a few visits if they can help - when I can get an appointment. So very thankful that Creon is covered! I think it is helping and now big problem is terrible gas. Diarrhea is much better but the gas! I understand keeping weight on is important and that seems difficult with low fat. I'd appreciate any suggestions and must say that life is still good, just frustrating.

Hi, I’m a granny too🫶🏽
So happy you are on here!
First of all, have you joined (free) the National Pancreatic Foundation???
They have a lot of references and help!!!
Also, as a fellow Medicare
senior, most will cover several visits with a RD (registered dietitian)
They are well worth the cost!!! Each of us with EPI have different needs with a diet because it’s going to depend a lot on what you can consume with the least irritations and symptoms! Even though we take the enzymes we all react according to our specific bodies. I hope this helps you and please be encouraged! I enjoy my life SO very much! We can thrive, it just takes patience and understanding what to try to avoid and what works and keeps you happiest!
Best of hope and progress!

Grannydee, thanks so much for your encouragement. I had never heard of EPI before my diagnosis and have been frustrated by conflicting info on line. Will keep trying!

I'm an active grandpa diagnosted wiht EPI in 2016. I also was diagnosed with Type 2 Diabetes around the same time, so I had already modified my diet to watch carbohydrates and sugar. I lost 35 lbs before EPI was diagnosed. After about a year my GI doc said I probably don't need to worry about fat any more and haven't had any issues. My weight has been pretty stable since the dignosis.
I also wanted to speak with a nutritionist and asked my GP doc for a referral. The insurance co denied paying, and I called them to explain my situation and that it was after a doctor referral, not simply a request. It did get covered.

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.

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.

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/