I have pacreatic divisum, which is a genetic disorder, my pancreas never fused together before I was born like it was suppose to. They did an ERCP and put a stent in. So I understand that pain, it's the worse. It started when I was 14 with gallstones, and then after I had my gallbladder removed when I was 15, the pain came back, so we knew it wasnt my gallbladder anymore cause that was gone, so they thought maybe a stone was stuck in my pancreas, which I heard is common with gallstones. Well they found out I had this pancreatic divisum and put a stent in cause the ducts where too small. It took a while for the pain to finally subside, about
4 years. The GI doctor had to refer me to a pain specialist cause my insurance wouldnt pay for him to do anything else to my pancreas, and was right away put on oxycontin and pancreas enzymes and actiq for when I had breakthrough pain at 19 years old. It was not a fun few years, but now I do suffer drom time to time with pain, but also being on a low protiene and low fat diet is a MAJOR thing your going to wanna follow, I'm sure your doctor has already told you this. And it's embarrassing sometimes for me to have this because when I tell people I have a history of chronic pancreatitas they automatically think It was due to drinking too much, so I always have to excplain to the doctors and nurses who have no idea what pancreatic divisum is. But I feel for you, pancretitas has been known to be one of the worse pains a person can go thru, nothing worse then the high fevers and vomiting up that brown bile, it feels like the pain is in your chest and back, and it hurts to move, breathe, or even scream. I know I will never forget that pain, much worse then gallstones, migraines, and childbirth with no drugs, 100 times worse!!! I know the GI doctor even talked about
putting in a feeding tube to help with the pain, he even wanted to do some botox in a few places around my pancreas, but of course my iinsurance wouldnt touch that, they said I could be helped with a medicine that I'm allergic to, but they said I could take benadryl, so I told them to forget it, I was not taking that med, even if my life depended on it.
26 year old Female , single mother of 2 kids, on SSI for migraines, pain, pancreas issues
All the things broken with me: Migraines, Fibromyalgia, Chronic lower back pain that causes severe pain/numbness/tingling especially to my left leg, Genetic Pancreatic Divisum that causes chronic pancreatitas, Asthma, Depression w/Anxiety/panic attacks
Prescription Meds:Suboxone 24mgs daily, Cymbalta 60mg nightly, Lyrica 50mgs nightly, Imitrex as needed, Ibprofen 800 twice daily, Zanaflex as needed, Ventolin as needed for asthma attacks, Advair twice daily
Over the conter meds: Benadryl nightly for itching due to meds (not sure which one yet),
Surgeries: Gallbladder removed at 15 years old, 2 ERCPs, stent put in pancreas, countless upper GI scopes, Bartholin gland opened permanetly due to recurring painful cysts
Goals: to go to college next fall to be a nurse and get off of SSI
Wishful thinking: to not be in pain!!!