Hello everyone,
I just joined and I'm looking to see if anyone has had or is having any problems that I am having. Back in 2006 & at the age of 26 I found out I had rectal cancer. I have had Chemo, Radiation, & Surgery. I had an ileostomy bag for a couple of months while the located the tumor was removed from healed. In January of 2007 which was bout a month after the ileostomy bag was put in I started having very bad pains in my right lower quadrant. No one had any clue what was causing my pain, the did every test in the book and every test said that there was nothing wrong. So we waited to see if the pain would go away once the ileostomy bag was reversed, but unfortunately the pain did not go away. In the last 5 years I have seen about 6 pain specialists that have tried to help me control the pain. Even with the pain pills I was given I was still having to go to the ER because my the pills I was given didn't always work. Sometimes the pain is so bad that I actually pass out from it. I have had to argue with ER doctors because after so many visits some of them would start saying that I really didn't have pain but my body wanted the iv meds so my brain just told me I had pain or as others said I was drug seeking. It got very upsetting because some, not all, of the doctors would give me a hard time and my parents & I had to argue with dr. I used to have to get notes from my pain doctor stating that I was allowed to receive pain meds from the ER. I beat the cancer which was easy compared to the pain I go through.
I had been told by my recent pain doctor that he thinks it's nerve damage, that someone hit a nerve while putting in my ileostomy bag, since that is the area of my pain. It's a throbbing, squeezing, & stabbing type of pain. I am wondering if anyone else has or had this type of problem after having an ileostomy bag. I'm also looking for any ideas on treatment and what pain medication work for you. I'm currently on Kadian 100mg twice a day & Neurontin 600mg three times a day. I also take MSIR, which is a slow release morphine. Please if anyone has ANY ideas I would love to hear them, because 5 years is long enough of living with pain and not having a life. Looking foward to hearing and chatting with you.
Thanks