Hello, My name is Rebecca and I am 30 yrs old. I have had chronic pancreatitis for 17 years but was only diagnosed 11 years ago. I got really sick when I was thirteen right after going to a camp with my friend. I was sick for months but the drs were unable to figure out why. I don't know if they ever checked my enzymes and they never did a ct scan. I had to be homeschooled that year because otherwise the school said I would have to repeat 8th grade since I missed the first 6 weeks. I went to a bunch of drs. I went through lots of tests. At 14, I took some weight loss drugs that caused me to have lots of indigestion and pain. The pain became worse and worse. I was throwing up all the time. The dr I was sent to believed I was making it up and I was bulimic. I didn't find that out until after I read his notes because he just wasn't acting right. He, also, put that my mother was brain washing me. I went off on him and never went back to him. My mom called the gastroenterologist who had does an endoscopy on me. She begged him to do something. He finally ordered an ultrasound. It showed multiple gall stones and lots of inflammation. The surgeons in town wouldn't touch me because of my age and the damage it showed to my liver. I was sent to children's hospital They removed the gall bladder but I continued to have attacks. This kept going on for 6 yrs. I kept going to drs but they just said lose weight and I will be fine. Finally right after I turned 19 the pain got really bad. I drank so much water. I was so thirsty. I ended up with what I thought was a very bad flu. My boyfriend insisted I go to the er. I figured they would just brush me off like always. Then I started hallucinating and making a weird moaning sound. My bed was saturated in sweat, the whole bed. They managed to get me to scoot down the stairs. The last time I remember is walking into the er. 6-7 weeks later I wake up with tubes coming out of every hole of my body and new holes with more tubes. My mom said the first thing asked was where was my baby. I had staples going from between my breast clear down into a bunch of hanging skin. There were a lot of problems with that hospital. They did unnecessary surgery claiming they removed 50% of my pancreas. I found out a couple years later it was at the most 10%. They damaged my spleen. It can't be fixed. They did one procedure after another. They caused sepsis and bed sores. They tried to jam a larger tube into my side that caused me to go into a second coma from the infection entering my blood stream. I was given no pain meds. I was left in my own excrement from hours to days at a time. I was tied down against regulation. I was starving to death. There own records show that the nutritionist tried to get the surgeon in charge to give me tpn. They got guardianship of me and kicked my mother out of the hospital. I would lay in there screaming in pain and crying begging to see my family. They would tell me (when they actually bothered to come by) that no one was there to see me. Funny, my mother lived in the waiting room the entire time. They kept the nurse call button away from the bed. My father was able to get guardianship of me. When the judge told them they had to get his consent for procedures (they fought it saying he was unreasonable although they admitted they never asked him) they decided to transfer me finally after four and a half months to another hospital. They tried to cover their own butts by putting Munchhausen by proxy as one of the diagnosis! It took my parents two lawyers, a judge, and guardianship to get me out of there. I got to the second hospital and was so sick all of my levels were off the charts. The sepsis was the worst they had seen. They put me on a bag of dulodid (sp) and tpn. The surgeon in charge there later told me they were simply trying to make me comfortable so I could die pain free. Instead of dying, I got better everyday. They were shocked. Everyone was. I had these huge holes in my sides. Big enough for my surgeon with large hands to fit his hand in past his wrist. There were three of them. They had to be packed several times a day and super painful. He asked me what in the world were they thinking. I had a bed sore on the bottom of my foot clear to the bone. Anyway, I spent a month there improving each day. They fed me losts of tpn and started me on physical therapy. They had me a month before the insurance said they would pay no more so they sent me to a rehab hospital in my home town. I was so messed up. One of the nurses there saw how terrified I was. I shook, jumped, and screamed in my sleep. She knew me from high school. She said I looked like a deer caught in the headlights. She took my mom out of the room to ask her what happened to me. That she hadn't seen a person so scared. I was there two and a half weeks having intensive occupational and physical therapy. Once I learned to walk several feet they dismissed me. They showed my parents how to change my dressings. My parents set up a hospital bed and a commode in their living room because my bedroom was up stairs. It took three and a half hours to get me up the two steps into the house. Since then, I have been in and out of the hospital. I never got to finish college and cannot work. I've had numerous surgeries. The damage to my spleen caused gastric varises that bleed from time to time. I've had over 90 blood transfusions. We didn't find out about the damage to my spleen until after I had surgery and started throwing up blood. My hemoglobin was 2.9. I had to be life flighted to the hospitaI with my surgeon. I had a bunch of hernias repaired. I developed diabetes. The surgeon (my life saver) from the second hospital said I would. I went to Indianapolis for an ercp and spincherotomy. (sp, sorry it's late and this makes me very emotional. I can't really think too well.) I've had to have many surgeries. I had one to remove a 14 lb bag of scar tissue and skin removed from hanging off my abdomen. It dehissed which left another huge hole to heal. I have a bunch of mesh now. I had intestines hanging out on the left side that had to be fixed. I get b12 and iron anemia. I can't have children because of all the scar tissue and extensive damage. We have had several surgical and interventionist drs. say they have never seen someone alive with so much damage. They say they don't know how I'm still here. My abdomen is hard and I only have feeling in part of it. My surgeon retired this March. I don't know how I will survive without him. He saved my life so many times. My diabetes is poorly controlled because my sugar gets very high from the chronic pancreatitis. I take 6-12 anti diarrhea pills plus part of a bottle of pepto a day. I have since I was 16. I still have horrible painful diarrhea. I've been on disability since 2005. I am in constant pain and live 99% of my life in bed. I have a very lousy primary care dr. I lost the good one when I lost my dad's insurance and went on medicare. I can't find another dr to help me. The pcd refuses to give me anything for nausea and pain because I will become addicted. I spend most of my time wanting to die since the pain is so bad and I have no life. I am on antidepressants and anti anxtiey medicine. I have post traumatic stress disorder and panic attacks since that first horrible prison they call a hospital. I have an appointment in December to see a gastroenterologist. It took my endocrinologist 2 months to find one to take me and the only one how would has a 6 month wait list. I did go to the er early sat morning and they actually gave my a script for a few vicodin (sp) to lessen the pain and a referral to hopefully get in to a gastroenterologist sooner. Anyway, I am sure I am missing a ton of information but have written way too much and I am exhausted. Thank you for reading! Becca