Hi everyone. A reader, CB wrote to us recently and asked us to post her story:
“I have been suffering with pain since Thanksgiving 2009. Actually about a month or two before but not as severe until Thanksgiving. I am not an alcoholic and rarely drink. On Thanksgiving I was admitted into our local hospital. I was put on an IV and pain killers. I was told that I had gallstones. Two days later they removed my gallbladder and appendix and fixed a small hernia. I continued to have pain on my left side right below my ribs which radiated to my back. I continued to go to my family doctor and advised her of this. She stated that it would take time to recover from this surgery. I continued to have pain and she took a blood test which showed my white blood cells were elevated, so assumed that the pain was due to an infection. I was treated with antibiotics and told that there was a pocket of fluid by the incision from the hernia surgery. When the pocket of fluid wasn’t reduced after the antibiotic treatment, the doctor tried to drain the pocket by reopening my belly button. Even after that I continued to have pain. Finally after almost 2 months after my surgery, I was sent to a gastrinologist. At first all he did was give me more pain killers and review blood tests. He advised me that my pancreas and liver levels were high. Which for my pancreas was told they should be between 0 - 300 and were coming back at the lowest 900. I was then told to go on a low fat diet. So I did, but I was still having pain. I eventually went on a completely fat free diet. I still continued to have pain. Another visit and the doctor finally decided to schedule some tests. The first test was an MR/CP. The radiologist said that it showed nothing. Thank God the doctor decided to review the scan himself. He advised that he seen a small blockage in the tail end of my Pancreas. He then scheduled me an ER/CP.
After that test he verified that there was a blockage. I was then referred to a University for an EUS. At that time a biopsy was taken. I was informed that the test results came back inconclusive. I was then referred to a surgeon. On March 8th 2010 I went in for surgery. The surgeon was almost positive that I had cancer. 75% of my pancreas, my spleen, 22 lymph nodes, a stomach biopsy and a wedge resection of my bowel was performed.
(It turned out to be a cyst in my pancreas which was not cancerous) I was in the hospital for 6 days. My recovery started out good. I had a JP tube in to get the excess fluids out of me. After approximately 2 weeks the JP tube was removed. On that day, I went to our local ER in so much pain, I could barely breathe or move. They sent me back to the University Hospital who performed the procedure. They ran several tests and came up with no cause.
I was kept in the hospital for 2 days and when released was advised that I needed to go back on a fat free diet. The day after being released I went back to the gastronologist for his opinion and assistance. At that time he referred me back to the University ER. It has been 8 days now with only minor pain. Today however the pain was back. The only time I have had complete relief is when I have been on a complete liquid diet. I know this is not healthy by any means. I have lost almost 40lbs since the procedure that was done on March 8th. I am absolutely terrified that I will die as the doctors seem not to be able to do anything except give me pain medication, which is beginning not to work anymore. I need help and feel I have nowhere to turn. Every doctor I see continues to refer me back to the Hospital that performed the procedure. Even my insurance company which assigned me a case manager is concerned. I have two children and am so worried. I’m afraid to sleep or eat anymore. I don’t know what to do or where to turn.”
As a postscript to CB’s original note:
“I have an appointment on April 15th with the surgeon and will press her for answers as to the diagnosis of my condition and what avenue I should take to finally be done with this extreme pain. I will advise you of what I find out. Hopefully my information and story will help someone out that is experiancing the same issues. Thank you for your research and your support. As bad as this may sound, it’s nice to know I’m not alone in my suffering.“
We’d love to hear from any others who have had similar experiences to CB (and I’m sure CB would love to hear from you as well!).
I’m sure all of us wish CB all the very best.
Kind regards
Jenny