Posted 7/13/2011 2:05 AM (GMT 0)
Yes- doctors make you feel crazy for wanting the surgery choice. But surgeons generally do not, so you will likely feel better after you talk to one. Here is a thread I posted way back in September when I was in the hospital facing the drug or surgery choice.
https://www.healingwell.com/community/default.aspx?f=38&m=1916692
Most of the GIs at the hospital made me feel like I was crazy to want surgery. However, the surgeon at the hospital who would have done my emergency surgery, had it come to that, came to my room every day to check on me and answer my questions. He did not make me feel crazy for wanting surgery at all. As I mentioned earlier in the thread, I did try an infusion of Remicade and did avoid the emergency surgery. My intention with it all along was only to use it to strengthen up and get out of the flare so I could get surgery under more ideal terms later. It was funny because every time the doctors came to my room, they seemed to try to talk me out of wanting surgery (even in the future). I got very good at saying "Even if this Remicade works... I still want surgery down the line" or... "I am only taking the Remicade to get me healthy for surgery in a few months." I should have just tattooed it on my forehead.
Anyway, as I was researching Remicade from my hospital room when I was initially trying to make the decision... the risky side effect I was most fearful of was not the cancer, but the possibility of joint pain that the FDA site mentioned. I am an avid hiker, climber and snowboarder and work as a education park ranger for a living. I was really worried about developing some permanent painful joint pain issue by taking it, and that all the things I was passionate about would become impossible. Still, I decided to risk it and take the Remicade as I was so incredibly weak and would not have fared well in surgery at that time. Ironically... a week later I developed joint pain to the worst degree imaginable. It felt like my joints were being stabbed by an ice pick and I just writhed around, crying in pain for hours each day, as no pain meds worked for it. This pain persisted, and I was so afraid it would never go away. Even then... some of the GIs still wanted me to take more. Talk about crazy! I cancelled all future infusions and scheduled my surgery consult. Fortunately, the pain began to dissipate in about 6 weeks once the Remicade left my system.
Despite all this craziness, everything turned out perfectly in the end... so I can't exactly regret my one experience with Remicade too much. It healed my colon enough to allow me to see a top CR surgeon that my GI recommended. He was amazing and I cannot imagine having the surgery under anyone else's care. I am incredibly happy with the results and feel blessed that everything came together the way it did. I am pain and drug free, and I am able to do everything I love again.
I am glad the biologics help so many people. I have a friend who takes Remicade for arthritis and absolutely loves it. Still, it important to realize that the risks are real. It is all numbers until you happen to be one of the unlucky ones that get one of the nasty side effects. In my case, I am very fortunate that it was nothing permanent and is just a bad memory now that I am on the other side of surgery and doing so well.
Stick to your guns. If you really don't want to put those drugs in your body. Don't! It is 100% your choice.