Do I need a pancreas specialist?

Posted by yvonnecappe @yvonnecappe, Jul 30, 2023

Four years ago I had major back surgery to prevent paralysis. Three years ago my back pain became unbearable regardless of what the doctors suggested. I was extremely fatigue, then the digestive issues began. For three years I’ve been told I had ibs, but nothing helped. This summer (2023) I was in the ED twice in a month. The doctor there told me to make an appt with a GI for a complete work up. July 4th my Elastase 1 came back at 57. Apparently my back pain was the result of pancreatitis. The FNP who ran all the tests prescribed Creon 36000, four times a day. That was the extent of my diagnosis, no follow up after receiving lab results, no counseling on nutrition, what to eat, what to avoid. The Creon info sheet has told me more than the FNP. The sheet mentions regular blood tests? Regardless of the lack of follow up I have found Creon has eliminated my bowel distress, my GERD has subside, my energy level has increased, my back pain has been reduced by 95%, but I still feel as if I’m floundering. Should I find a pancreas specialist? I’m fortunate my spouse says wherever we need to go, whatever we need to do. Should I see a doctor at Mayo? Mayo ran my elastase 1 lab work.

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PLEASE see either a Gastro doctor that is familiar with EPI (exocrine pancreatic insufficiency) asap!!!
Also contact the National Pancreatic Foundation, they are SO HELPFUL and will assist you in any way they can,
I was misdiagnosed for 30 years and the damage is cumulative, I now thrive instead of the pain and embarrassment of being malnourished, constantly hungry, running to the bathroom 15 times a day.
There is hope!

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@grannydee

PLEASE see either a Gastro doctor that is familiar with EPI (exocrine pancreatic insufficiency) asap!!!
Also contact the National Pancreatic Foundation, they are SO HELPFUL and will assist you in any way they can,
I was misdiagnosed for 30 years and the damage is cumulative, I now thrive instead of the pain and embarrassment of being malnourished, constantly hungry, running to the bathroom 15 times a day.
There is hope!

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Thank you so much @grannydee !!! I just feel so lost. I have no idea of what to even ask. I appreciate your advice - I will go to the NPF right away!!! @yvonnecappe

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Definitely !!
I was also misdiagnosed for years with "indigestion" reflux etc etc

Went to capital city hospital and was diagnosed with pancreatic cysts !!!
8 years of Creohn & last oct had 2 plus spleen plus most of pancreas removed as 2 of the 4 had grown and become pre-cancerous !!
Now diabetic with diet issues but still better than cancer

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True that!!! The Big C runs in my family and scares me like it’s a big ol’ snake chasing me!!

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