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AUTO-IMUNE PANCREATITIS


My name is Danyell, I am only 20 years old. About a year and a half ago in the fall of 2003, I got sick with debilitating pain in my upper stomach, like heartburn but, in the stomach not the chest. First it was an ulcer, but I knew that was wrong, then it was hepatitis, also incorrect, then it was gall stones, so i had a stent put in, that was also not the problem. After going to doctor to doctor, test after test, diagnosis after diagnosis, I was sent to a Pancreas specialists in at the University. Finally, after about 3 weeks of pain and throwing up everything I was able to eat, they gave me some pain killers so I could at least function half-way decent. My specialist informed me that there was a super rare tumor in the head of my pancreas, and the whipple procedure was recommended to remove it. As many of you well know, the whipple is a very serious major surgery. Before hand they put an epidural to get rid of the pain. My surgery was lengthened due to the severe inflamation of my pancreas and portal vein difficulties, which led to a blood transfusion of nearly twice the amount of blood the human body holds. After waking up, and finding out that my epidural was not working, they pulled it out and the only pain relieve i had was taking morphine and hoping to pass out. It was the most painful and difficult thing you can possibly imagine. I was only in the hospital for 10 days, when I left they only gave me hydrocodone, which I took in the first few days, at about 4 times the recommended dose, which was still no match for the unbearable pain. I couldn't eat and threw up probably 8 times in the first 24 hours of leaving the hospital. I lost 40 lbs. mostly muscle, I was only 138 lbs when i had the surgery, and around a 100 probably less when i went home. I wanted to die. I really did. But the best part is coming, I went back to talk to my doctor, who then informed me that there indeed was no tumor, but instead a severe case of sclerosing lymphoplasmacytic chronic pancreatitis ( auto-imune pancratitis ). In which case surgery is not needed, but steroid treatment cures the condition. It took me nearly a year to get back to the weight of 130 lbs. and now even later, I still suffer everyday, I can't eat what I like, infact everything I eat makes me sick. I go to the bathroom 3 times a day and it's never pleasant. There is a huge scar from my ribs to below my belly button, and not to mention the canyon between my abdominal muscles that didn't heal back together. I guess I got off light though, I am truly sorry for anyone who has to endure this surgery. I do not feel that I will ever be 100% better. I am thankful I survived but it's killing me to know that it was all for nothing, that I didn't need it, and my condition is actually worse now. I was only 19 when I had the surgery, which gives me the rest of my life to suffer from it.


Posted 03/31/2005 10:44 am by Danyell
E-mail Address: danyellroth@hotmail.com

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