Hello everyone! I have recently been diagnosed with EPI. No help with how to deal with it beyond take your Creon. They started me slow 12,000 units and now want me on 36,000 units 2 with meals, 1 with snacks. It has made me very nauseous. So my question is: Has anyone else had this issue and does it get better?
Also, I get bloated as soon as I eat. Like 9 months pregnant looking bloated. Has anyone had this problem?
Thanks for any help!
I have never been nauseous with Creon but was so with the 9 month tummy & after further tests ( endoscopy) & CT scan they found a cyst on my pancreas. Once they removed it the tummy is less bigPerhaps ask for more.tests
I’m having an endoscopy in March. So we’ll see what that shows. Thank you so much for your reply.
I’m forgot to ask if the cyst was non cancerous. I hope so.
Yes it was thank you
Can I ask what size your cyst was and was it on the tail or on the front of the pancreas?
It was on the front but small
Hello Gatorgirl.
I confirm that I did get severe bloating with Creon (more like 5/6 months pregnant looking in my case) and I also felt nauseous in the beginning.
My dietician directed me as follows:
Every 4 grams of fat consumed requires 1 Creon 10,000 tablet.
So it's not what meal you are having that counts (e.g. breakfast, lunch, dinner, snack) but the fat content of your actual meal. For instance if you are just eating an apple as a snack, an apple has no fat and therefore does not require Creon.
It takes some adjusting and also perhaps try purchasing the carb & calories counter app since it is pretty accurate on fat content in food.
Also you need to check that you are getting sufficient nutrition (fats, proteins, fibre, carbs, calories etc) for your stature.
I hope this information helps.
Good morning. I was on Creon and they have a specialist available at all times. They assign you a Creon liaison. Try looking in to this and I hope you feel better.
I did get information about the Creon liaison. I have somebody that has called me and I have not had time yet to return their call. However, I will. Thank you so much.
Persevere with the creon, as you say what you eat will need a balanced dose of PERT but you will get there, over 12yrs and still here 👍
thank you. It means a lot for you to tell me that it’s been over 12 years and you’re still here. I’m very happy for you. I had a good week on Creon. Everybody’s comments have helped me with how many pills I should take. So a lot of the nausea is gone. Thank you so much!
As I have an allergy to pork Creon and other brands is not an option. How do I manage it. Hit and miss and take prescribed Imoduimbut 2 years down the line I'm winning.
What do you mean by “you are winning?” I am very happy you are!
Perhaps under control
Ok. That’s wonderful. I am still working on that!
Help with EPI
Struggling 
Just been diagnosed with pancreatitis- bit of a shock -
