I had my first infusion of Remicade in December of 2009. I was still on Prednisone at this point and had just finished a two-month course of Flagyl and Vancomycin, antibiotics that were used in tandem to treat a resilient C-Difficil infection. C-Difficil is a bacterial infection that causes symptoms that are virtually identical to U.C. symptoms and therefore often go undetected for dangerously long periods of time in IBD patients. Ulcerative Colitis and Crohn's patients are the only people on earth who are able to develop spontaneous C.Difficil infections as they are otherwise only caused by antibiotics or are transmitted, generally in a hospital setting. This was not my first encounter with C.Difficil, but now that I am cured of Ulcerative Colitis and no longer have a colon, I can safely say that it was my last.
Once the C.Diff was cleared I was able to "safely" begin my treatments with Remicade. Remicade is a TNF-blocker (tumor necrosis factor) that is administered via I.V. over the course of several hours. U.C. patients have elevated levels of TNF, a cytokine that causes inflammation. It functions by inhibiting the TNF response in the body's immune system. Remicade can be a wonder drug, and it allowed me to live blissfully in remission for the longest period of time in 9 years. But users should be wary. While fairly rare, Remicade has been found to cause leukemia, lymphoma, lupus, congestive heart failure, and other serious diseases and side effects. It has been more commonly linked with respiratory illnesses, such as tuberculosis, and so Remicade patients must be tested for T.B. regularly. Serious allergic reactions to Remicade are not exceedingly rare and chronic sinus infections and mild bronchial infections are quite common. Because of the considerable dangers of using this drug, Remicade is only administered as a last-ditch effort before surgery becomes imminently necessary.
On a more practical note, Remicade is simply a pain. Because it is administered intravenously, you become a prisoner to a hospital or clinic's 9-5, Monday-Friday schedule. If you are a working woman/man, this can become quite taxing. Infusions are generally given every 6-8 weeks (initially it is spaced every 2 weeks, then 4 weeks until you reach a therapeutic level). I personally found it difficult having to take a half or full day off of work this frequently.
Around December of 2010 my U.C. became symptomatic yet again. I had hoped that my upcoming Remicade infusion in January would set everything straight. It didn't. I became increasingly worse over the next eight weeks until my next infusion in March of 2011. At this point I was feeling very run down as it had been over two months of active U.C. symptoms. I knew that a lot depended on this infusion. If it didn't work, I would be back on Prednisone at best, and in surgery at worst. About twenty minutes into the infusion I felt like I was suddenly hit with a ton of bricks. I went into anaphylactic shock. Within seconds a team of nurses and doctors were at my side. They immediately stopped the Remicade infusion and administered Benadryl into the I.V. Within minutes I was stabilized. When normal breathing returned it was quickly accompanied by an almost convulsive bout of crying. I was scared. The first thing I was able to think of was the fact that this was the end of the road for me. I was going to need surgery. I pictured the ostomy bag on my side, which I knew was imminent. I thought of the life-threatening allergic reaction I had just endured. I thought of the fact that I had just subjected my body to nine years of risky medicinal treatments and had suffered from this disease for almost a decade...and for what? I had lost this battle.
Surgeons will only perform a panproctocoletomy for four reasons: 1. the patient has colon cancer that is unresponsive to chemotherapy or radiation treatments 2. in pediatric cases where a Crohn's or U.C. patient is unable to grow because of severe vitamin deficiencies 3. toxic megacolon 4. a U.C. patient has run through all possible medicinal treatment options. While I appreciate this conservative approach to surgery, I can't help but be somewhat critical of it. If I had undergone these surgeries nine years ago, would I now have healthy kidneys? Would my hands be free of dysplasia? Would I not have to worry about all the long-term effects of prolonged steroid use? What would I have accomplished or experienced in all those years I was so ill?
These questions will probably always be lingering in the back of my mind. There is a fine line between optimism and denial, and I do not want to breach it. For now, I am focusing on how lucky I am to have had this surgery, how lucky I am to be alive, and how excited I am by all the thing I will accomplish and experience in the future because I was able to have these surgeries.