I am 38 and I have had chronic diaherra for awhile and have googled for an answer. My story was i got to the point where I couldn't eat and lost weight quickly. Went and got a colonospcy and it came back clean. I sucked it up and went to the ER and found an inflamed appendix. Had that removed and issues got better but still remained. Finally got diagnosed with EPI after a few stool test. My CT Scan is showing no issues with my pancreas. My GI Dr is saying they are seeing increase of younger people with this likely due to our diets.

@hopethereisnothing

I’m 49 and I’ve been going through this for 6 years now. Shuffled from doctor to doctor, all blood and fecal tests point to EPI, except the perfect pancreas. Creon did nothing, and in the first years it almost seemed to come and go. They kept going back to maybe a 20 year old gastric bypass as well. This year, I had such terrible pain I was hospitalized with “acute pancreatitis”. Once again tests showed elevated levels, but no cause found.

Okay here’s the part where I caveat a moment… in these last years I’ve been having multiple none related issues pop up, all that are equally frustrating because all with no known cause. So my primary doctor who also is frustrated and I have been researching and brainstorming, and have 2 possible reasons that we are in the early stages of getting diagnostic tests done. The first is an often unrecognized EPI “mimic” from Vagus Nerve damage. I had multiple neurologists say that’s not a thing, but there is a lot of research on it on the NIH and other reputable sites. The other diagnosis possibility, for me at least, is a genetic condition (not hereditary I don’t think) called hATTR. It has multiple components including cardiac, kidney, musculoskeletal, neurological, and eye related diseases. Both are treatable… so hope is good. Though I may have taken too long to figure it this out for me, look into it and don’t be discouraged.

I’ve been my own advocate, cheerleader, and researcher for years. After so many years of this I’m exhausted, and wasting away, and am not sure if anything will matter by the time it gets diagnosed now. But I have been at this for almost a decade, I’d think, if I paid closer attention early on. Before this I was pretty vibrant and attractive, and now I look like a skeleton… I’m 49 years old! I have two young kids, and I’m almost positive I’m going to die in the next year. I honestly can only hope that some definite diagnosis might happen before then in case it is genetic, then maybe my kids might not have this same hell to go through, and maybe neither will you, if this out of left field idea helps you. Good luck- and FIGHT!

@hopethereisnothing

I am only 38 and have EPI. It's hard dealing with it. All my blood work is normal and CT scan was normal. My Glucose was high but I wasn't fasting when they took the test. It's hard dealing with this. My GIndr said more and more younger people are getting this likely from the junk in diets. My stool elstate test was 200 when I was diagnosed. It's now over 800 on creon.