Looking for support group

[Bluespower]

I have had UC since early 2022 and was recently diagnosed with EPI. I am looking for an appropriate support group for help in managing my diet while using Creon as an enzyme supplement. I appreciate any help in my search.

Regards

Bluespower

[tomdickharry]

Please tell us what UC and EPI are. Thanks. Ulcerative Colitis, maybe, but just guessing.

[Bluespower in reply to tomdickharry]

Ulcerative colitis and EPI is pancreatic insufficiency where you don’t make enough digestive enzyme.

[tomdickharry in reply to Bluespower]

Yes, but when you have brain problems from pernicious anaemia all these abbreviations don't register. I remembered an hour later.

[Redroad]

Hi, I too have been recently diagnosed with EPI and take Creon. I don’t know about you, but I was prescribed Creon with no instructions on how to take it except to take two before every meal. I actually learned how to take it when watching a YouTube video by Mission Cure, I believe it was on Nutrition. Anyway, what I learned was to take it right before my first bite of food. (I was taking it 15 minutes before I ate) I’ve been on it now for 11 months . I’m still working on my diet having been so sick that I lost 50 pounds. I am conscious of my fat intake and stay away from fried foods ( bummer because I love fried chicken!) Also, if I eat a bigger meal like out at a restaurant or over the holidays, I would take another Creon in the middle of my meal. Not sure if this helps but I know how much it meant to me when I initially reached out on this forum for support.

[Bluespower in reply to Redroad]

Yes I had the same experience. No instructions other than at each meal and one pill with a snack. I also read that you should eat smaller, more frequent meals with EPI. Just not sure how you allocate the Creon under those circumstances. Anyway, I have gone gluten free, stay away from dairy as much as possible and avoid rich sauces. Not an exciting diet, but things have improved. They’re not perfect and I have yet to gain any weight back, but it’s better than before.