Ever heard of PANCREATIC DIVISUM??

[scared_4my_sons]

I would like to help any I can since there seems sooo many out there having the same fight I did. It took 3 YEARS of testing and ERCPs and CT Scans, MRI, HIDA Scans, ER visits, Pancreatitis, IBS, constant bowel problems! AND, and the same time... I could NOT stop GAINING weight... I got to 283 pounds (my average is about 150-160). After 3 YEARS of tests and poking and prodding, "it's your liver" "your gallbladder"... blah blah blah.... FINALLY, I had a doctor who would NOT give up! He admitted he was baffled, my life was useless... I was on METHADONE, MORPHINE AND DILAUDED daily, besides the almost every other day visit to the ER for an IV dose of more Dilauded just for the constant PAIN in my upper abdomen, right under my rib cage. I am 38 now, had a hystorectomy 6 years ago, always had pain from endometriosis, cysts in my ovaries, etc. This truly baffled all the local doctors. I was sent to UCLA, was all set for ONCE again... Stent placement, which would erupt into another pancreatitis attack, another week in the hospital. The DAY OF my surgery, my insurance denied my trip and sent me to a specialist originally FROM UCLA (they had been the first to diagnose and recognize the PANCREATIC DIVISUM) it is VERY rare, and even more rare to have symptoms. However, here in Bakersfield, California there is a Dr., Maureen Martin at Kern Medical Center who met with me and after a FULL evaluation and consultation, I was finally scheduled to have a surgical procedure called "TRANSDUODENAL SPINCTEROPLASTY AND CHOLECYSTECTOMY".... regular language, she reconstructed my deformed or malformed pancreas (can be caused before birth or due to alcoholism) and removal of my gallbladder. That was in August of 2007. I have a VERY large scar from under my rib cage and down around my belly button. I do NOT accept blood transfusions, less than 2 tsp of blood loss, NO complications. About 3-4 weeks in the hospital then sent home with a daily home health nurse to change my feeding tube which was a central line thru my jugular. It is almost ONE year.... I have dropped over 100 pounds, have NO pain, and am not on ANY NARCOTICS whatsoever!!!! Looking through my med file I read the "will" I wrote while in a pancreatitis attack and I had NO hope for any sollution. PLEASE LADIES (AND GENTS) don't GIVE UP!!!! This is VERY RARE!!!! Many doctors will NOT have heard of it and may try to dismiss you, but look up everything you can on it and I hope some day at least ONE of you can have joy of life returned to you as I have. I can now walk around the block with my 7 year old... watch my 16 year old be a fool. But during those 3 years, I was on so much medication, I would nod out constantly, could never even function correctly. TRUST YOUR GUT (NO PUN INTENDED) YOU KNOW YOUR BODY... FIND A DR WHO WILL LISTEN AND NEVER STOP!!!!  I still have Rheumatoid Arthritis, Fibromyalgia, RLS, Sleep Apnea, Depression, Acid Reflux and now a reoccuring MRSA Staph infection from all the meds and the recent surgery. But my quality of life without constant unbearable pain wants me to shout to EVERYONE about this very rare and deadly disease!!! There are enzymes you can take to help your pancreas, I tried a couple and stuck with Viokase til after the surgery.  My Amylase was from 14-330, and my Lipase would be anywhere from 196 - 3940!!!! This is a DEADLY disease and many more die from it before it is recognized!!!