Exocrine Pancreatic Insufficientcy

I was diagnosed with EPI 3 years ago after Covid. Lost 60 lbs in 10 days.
I am still on pancreatic enzymes which is a pain because there are so many pills, but wouldn't be able to leave the house without them.
Sorry to hear your going through this.

I was finally diagnosed (by a new GI physician) with an abnormal pancreas and an elevated fecal cal protein. I'm on the enzyme replacement, which has made a world of difference. Pain is not 100% gone, but about 60 -70% gone. I am getting retested in June to confirm PSC. Also, I am taking 1/2 dose of Miralax every morning and 1/2 fiber pill every night. I agree. A lot of pills and remembering to take them before you eat any meal or snack can be a pain.

I was diagnosed in May after trying OTC Pancreatic enzymes on my own for digestive issues. Most Drs aren’t very helpful. I’m a little obsessive and think I am limiting my fat too much and am losing weight. The pills are a pain and sometimes I think I’m taking too much although it shouldn’t hurt you unless you have side effects, which I don’t think I do. They have also diagnosed me with Chronic Pancreatitis, which I think is a little over the top.

I was diagnosed with EPI as a byproduct of Crohn’s. The condition arose following a third bowel resection. The Creon makes a WORLD of a difference. Still have lots of gas as each day goes on, but the steatorrhea is under control. When in doubt, if you are having a meal which has an especially large fat content, like a steak, take an extra Creon capsule.

Thats true I am not shying away from the enzymes. I am actually on ZEnpep. Trying to convince the gastro to give me more was a pain but he did and yet I might have to ask for more again.

Docs are not much help at all. I found a website on Facebook that is really awesome. It may not always be a good read because I see so many people in worse shape then myself. But this disease is all trial and error and (the web site) its like having your own drug trial "so to speak". Unfortunately everybody out there is different and no one is a doctor but if it was not for that facebook sight I would be lost because the gastro I have just prescribes. We all need support with this disease, it is a life changer.. Also the fat thing is tough I have a hard time with the good fats they tell us to try because your always messin around with trying to dose it. Were all test tubes. the facebook website is :
Living With Exocrine Pancreatic Insufficiency (EPI) Support Group

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I have been on the site for 6 months. But as you say some are so much worse than I am that I feel like it just depresses me. And makes me anxious about getting worse.