April 16,2007

I attempted to post yesterday, but after 2 power failures I finally gave up. It was probably more than what anyone really wanted to hear anyway. The easy was to say what I was going to say was this. I had surgery when I was 18 to removed a bad gallbladder. When the surgery was performed I was found to have an annular pancreas. My annular pancreas was caused from the pancreas and duodenum not separating during fetal developement. My surgeon at the time was quite displeased with his findings and told my mother and grandmother " pray I have seen it once before and he is dead, some day this will have to be delt with". It was a terribly difficult open gallbladder surgery to wake up to. I woke up with acute pancreatitis from his attempts to
"fix" what he had found, but was unable to and put things back the way he " found" them. I managed to do pretty well after that surgery, about 2 monts after, my life was "normal". I went on to marry, go to nursing school, graduate from nursing school, divorce, remarry and then. One day I woke to my back aching terribly, I was working as a nurse and was used to the I lifted one to many patients back ache, this was nothing like that. I went to the Dr. and the Dr. thought it was muscle spasms and way it went like it came. I started dreaming of nausea, and would wake up in the morning to see that someone had been sick in the middle of the night.... yea me. I went and saw that surgeon who did my gallbladder surgery as he had instructed me " if you have difficulties with this, call me." Immediately he said " I can't help you"... " Can't you refer me to a gastroenterologist"? " There is no one around here that is prepared to deal with your situation". Which eventually led me to Indiana University Medical Centers G.I. Department. IU is thought to be one of the U.S foremost places for G.I. stuff. I had a ERCP and woke up to the terrible pain of acute pancreatitis again. I was kept on IV Demerol and Phenergan for a couple of days. I would wake up complain of pain, and be given more pain meds to sleep. After 4 days in the hospital it was then that I learned a stent had been placed into my common bile duct. I would be sent home within the next day as soon as I could tolerate clear liquids. IU Med Center is about 80 miles from my home. After coming home, I still had horrible pain, especially when I attempted to eat something. I went back to work the following week and tried to work my job, but the pain would get worse with activity. I evtually ended up in our local ER, my first ER visit with elevated pancreatic enzymes. I was given an injection of Demerol and sent home. I was given instructions to notify IU in the morning which I did and an appointment was made for me to return. My return visit, was another ERCP to remove the stent, I was made to believe that everything was fine. There was absolutely no reason why the stent should have caused such horrid pain, NONE. When I read the report of the procedure the stent had retrograded into the pancreas, funny I wasn't told of this. By now I had more diagnosis' to add to the annular pancreas; pancreas divisum, sphinter of oddi dysfunction. The no minor papilla diagnosis didn't come until Nov. 2005. I did well for about 2 months ... the date I remember all to well 1-27-1997 I woke up to the worst pain in the world, it was the first time I ever woke up screaming from pain.... it never went away until I woke up in MN after my pancreatectomy.
I spent over 9.5 years in the torment. I have had people ask me why didn't you have surgery before last year? I guess I thought that for some reason it would just go away the way it came.
Or I guess I hoped that it would. I had seen surgeons before they would say " lady I can take your pancreas out, but it won't stop the pain" I guess I thought, why go through such a huge surgery and still have pain". I had to do something last year, had to... We all know that feeling.. something has to be done. although I had searched for help before I had never sought Dr.Sutherland.
People ask me from time to time.... have you returned to work yet? The answer is no... everytime I feel like it might be a possiblity something happens. I do still have some pain.... it usually occurs in the evening when I am tired. I was so sick after almost 10 years of this disease, it may take me a while to get back what I have lost. I didn't get this sick over night and it will take more than a few months for me to get 100% if 100% is possible. I will try as hard as I can.
My life is better than it was. I no longer wake up to the sound of my own voice screaming every night. I know longer need the amount of pain medication that I once did to keep me comfortable. Today I was able to get up, eat and then shower. I haven't done this in almost 10 years. I would wake up screaming and crying take pain meds and sit and wait for them to take effect. Some days it would take up to 3 hours before I could even manage to get up and move around. I walked funny, my shoulders were humped forward and I was slouched over. My family knew not to speak to me for the first few hours I was up, not that I would be mad, but that the pain was all consuming. That type and intensity of pain is gone, that start out as a 10 and move up the scale kind of pain.
Well I am tired it has been a terribly busy day.