Monday morning, after 5 years of constant pain, I'm finally getting an endoscopic retrograde cholangiopancreatography (ERCP).
It's usually a very routine procedure to remove gallstones from your bile duct. I should've been able to get it with my first pancreatitis attack, in 2011 but for some reason the Dr treating me in the Hospital decided not to do it. The surgeon just took out my gallbladder, and they said I'd get better.
So they removed my gallbladder, but the pain continued. The GI Dr wouldn't believe me though because the pancreas numbers went back to normal after a few months.
All my other drs (primary care and my hematologist I see for my blood disorder) said this is the first time they've ever had GI Dr's refuse to do it. We've been trying to get it done for 5 yrs, because they have thought there must still be a stone there or sludge or something causing the pancreas pain. We even went to the university of Utah.
My PCP and my hematologist both had different Dr's agree to do the ERCP during consults over the phone, but then when I showed up they would refuse to do it.
Well, January of this year, after 5 yrs, my pancreas numbers finally got high again, and my PCP had proof that my pancreas needed to be reconsidered. This was in January. I went back to the local GI Dr, after this pancreatitis hospitalization, and after seeming like he finally believed me, he ran labs. But when he got the results, once again said the labs were normal and there was nothing he could do. This brought me to my breaking point.
I do my best to look on the bright side and not complain, but after 5 years of pain, finally having the lab proof that the Dr's said we needed, and then being thrown aside again, I'd had enough. One night (in March i think), the pain was so horrible that I got desperate. I started scouring the Internet for Dr's who cared about patients suffering from pancreatitis. I found the university of minnesota, where they pioneered the TP-AIT surgery for patients with chronic pancreatitis. I don't have chronic pancreatitis, but I decided that if they cared enough about their patients to take out their pancreas' and allow them to choose diabetes over chronic pancreatitis, these Dr's must get it.
I contacted the university of minnesota, and saw Dr Amateau on April 6th. After doing an MRCP with secretin, he said they found proof of a small stone in my cystic duct. They scheduled the ERCP to remove it, and it's being done Monday May 16th. He said it might not resolve all the pain, but after 5yrs I don't expect it to. Any answers would be nice though, because pancreas pain without an explanation is pure torture. I wouldn't wish it on my worst enemy, even if I had one.