OK, there are people here from all over so I’m looking to hear from anyone. I live in NC near Duke hospital. But so far no one here has been able to tell me why I keep having pancreatic flares - especially so frequently. (I can’t even go 1 month wihtout a flare.)
So, I am trying to find a specialist that has maybe helped you all?? Is there somewhere in the nation that is known for it’s pancreatitis research?
My pancreatitis is completely ideopathic.
Thank you for your help.
Go to http://www.pancreasfoundation.org
That is how I found my doctor. I live in rural New England.
I’ve seen doctors for years and NO ONE KNOW ANYTHING ABOUT the pancrease. Finally after my pancrease showed significant increase in calcifications my PCP agreed to refer me to a specialist. She checked this web site and found me a doctor in Boston.
I’ve only met him once, but at lease he listened to me and ordered tests and now I know that it’s hereditary, which is the first answer I’ve gotten in years. Hang in there. I like you am just starting out regarding finding information on this disease.
Hang in there.
Thanks for the reply. I live in South Florida and I found a specialist who
seems to be on the ball. He, too, is running more tests. We’ll all hang in
together. You are in my prayers.
Jackie
I have discovered that Johns Hopkins has a center specializing in pancreatic
diseases as well as the U of Cincinnati hospital. Mayo Clinic is a great
hospital according to others on here. I live in Palm Beach County, Florida
and I have found a specialist. He specializes in gastric diseases. He seems
to be up on all the research. However, if I need to go further I would go
to one of the above.
I hope this helps.
The pain wears me down sometimes. I sure it does for all of us as well. I
am so glad for this support site. It’s hard for friends to really understand
all this.
Thank you all!
You are in my prayers
Jackie
Check with your teaching hospitals in the area. As mentioned, the Mayo clinic is very good, my doc is ready to send me there. I believe there are 3 Mayo clinics in the country. Keep looking because eventually you will find the right doctor, and don’t settle for second best. It is your health and CP is lifelong. Pancreatic diseases are very difficult to treat and with lack of research monies in this area, there seems to be no end in sight. I always see silver linings in everything and due to the fact that Patrick Swayze has pancreatic cancer, research monies may come our way. Keep up with the info on the pancreatic foundation web site and certainly bounce anything off any of us here at CarePlace.
Good luck and prayers for pain free days and nights
Teresa
The best answer I have gotten as to why we flare is this, it sounds
dumb, but I think it is true…so here it is, " we know so little about
the pancreas, we know its function and that it is a needed organ. But
it is a mystery and so complex, if we knew why this happens, it could
possibly be fixed, so it is just something you cp people live with until
research shows something.) sounds dumb for a doctor but the more I read
I guess it is true!
julie
My daughter sees her specialist at Johns Hopkins and he is wonderful. He has managed her since she was 12(now20) and NEVER disbelieved any of her pain or symptoms. Even the nurses there are so knowledgeable with this disease and have always worked with her. Never a problem with pain meds or having any testing done. Highly recommend!!!
Good luck to you.
Terri
Can you share the doctor’s name?
Her dr’s name is Dr. Anthony Kalloo-don’t know if he is seeing new patients but he can refer you to someone there. He is the Head of Gastro at Hopkins, and many have worked with him and deal with pancreatitis.
Terri
Try the University of MN or Cincinnati. They have specialty clinic. Hope all goes well for you. Ellen