The C Word

I woke up from my colonoscopy completely dazed and wondering how my rear would feel. I remember receiving the anesthesia and thinking, “I can’t believe this doctor is entering through my ass.” Little did I know that I would have years to come of several moments like that morning. When I woke up the doctor gave me the diagnosis and handed me a prescription for a thousand pills. Of course there was no discussion as to what to expect while taking these meds. Within the first few days I began noticing that I walked around with a polluted mind. I was so drugged when I had my first follow-up appointment after my colonoscopy. I had so many questions to ask about the medication and disease; however, when I arrived I blew it. I could barely focus, let alone read the list of questions I had written. The doctor and nurses found it amusing that I was so stoned. My mother came to the appointment with me, but still didn’t know much about Crohn’s either. When we left she told me that we would have to begin our own research. I would have to arrive to every appointment with a list of my concerns and demand answers. I had no idea what the plan was after Prednisone. I knew that the steroid seemed to bring down most of the inflammation, but was not a good long term drug. After my first hospital stay the doctor recommended Cimzia. The doctor gave me a brief explanation about the biologic. He was in a panic to administer my first shot. Still being on Prednisone, Bentyl, and Apriso, I agreed to anything. It wasn’t until after my first dose that my family and I began reading the details on Cimzia. The biologic was still fairly new, and the drug seemed to present a lot of hope for Crohn’s. I briefly read over the possible side effects; I agreed to take the medication. With some time I began to realize the impact these drugs would have on my life. I began joining several IBD forums to hear what others had to say. I heard all the positive and negative views on all biologics. Then I began reading comments about lymphoma, hair loss, and liver issues. Ok, so maybe doctors don’t tell you about lymphoma because it’s such a small percentage? Maybe they don’t give you the load of side effects, because they don’t want you to freak out every time you don’t feel well? It wasn’t until my first CCFA seminar that I felt the full reality of this disease. I heard about death rates, lymphoma, colon cancer, and ostomy bags. I realized that the few biologics out there have a caution list the size of Texas. I later moved on to Remicade. Man, did I ever hear horror stories about Remicade. People on the forums either loved the drug or hated it; no one was on the fence. I went along with the routine blood work, and I always crossed my fingers for positive results. Every infusion I went in thinking that it was a piece of cake. I would be tired or flu-ish for a few days, but the pay off would be worth it. Now I am experiencing my recent scare. If I had to compare it to my fistula experience, I’d say it was similar anxiety and panic. No one likes when something bad occurs for the first time and is an unknown symptom. I woke up with an enlarged lymph node in my neck. For over a month I have also been experiencing night sweats. The kind of night sweats where you HAVE to get up and change your clothes. I always feel fatigued: even though my B-12 and vitamin levels are close to normal. Certain days I have hot and cold flashes; however, some days I’m completely normal. You would think I was still taking Prednisone! It was time to call the doctor. At first Amoxicillin seemed like the fastest solution. I was convinced I had mono. After all, the symptoms matched perfectly. The blood work showed I was a carrier of Epstein Barr Virus, but that it was presently dormant. Phew! My specialist in Miami didn’t like me taking the antibiotics because it can trigger a flare. I went ahead and finished my dose and went in for an ultrasound. I felt like death. I almost cancelled the appointment, because I noticed my lymph nodes swelling had gone down. I went ahead with the appointment, because I thought it couldn’t hurt. The ultrasound tech can never tell you what she believes to see, or what she KNOWS she sees. She just kept saying, “Is this the area that it was very swollen? The doctor will probably call you back into the office, just incase.” I left the office a little disturbed. I thought everything was fine. That lady was beating around the bush like no other…just give it to me straight! So then I had the discussion with my nurse: my GI doctor and the radiologist are sending me to an oncologist. I’m sorry, don’t they deal with CANCER?! You can’t be serious? Ok, well clearly this is all a precaution because I’m taking Remicade. Oh no wait…I’m taking Remicade and Imuran. They are two lovely drugs that both can cause lymphoma – just a small percentage (as the doctors say). It’s one thing taking these drugs to help my Crohn’s; however, it’s another taking them for life and having constant scares of its side effects. It sure does feel like one thing after the other. I will have a biopsy this week, unless the oncologist really feels like it needs to be removed, according to the nurse. I am positive that the results will be negative. I just can’t help but to be nervous…just a little. I think it’s time to try those worms!!