Sunday, June 10, 2012

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!!

Sunday, May 27, 2012

Too bad my shit isn't invisible!

People often refer to Crohn’s Disease as the “Invisible Disease.” I couldn’t think of a more perfect nickname. Invisible refers to the internal pain that we deal with daily. People don’t see any dramatic, exterior changes like those who are in a wheelchair, or use a walker daily. I believe that I’ve learned to deal with every day pain. I can probably tolerate pain better than most, mainly because there’s not a day I live without having pain in some form. I do my best to carry on and appear “normal.” People then like to make the assumption that I must be 100% better. The infamous, “you don’t look sick!” “Look, she’s playing with her nephew. She doesn’t look that sick.” “She did her hair and makeup…she must be feeling better.” “It’s all in her head. She seems fine.” “She just needs to be very strict with her diet.” “She needs to just get off all those medications. I know someone who did it, they’re doing great!” The best is when people judge what you eat. When you mention Crohn’s they automatically assume that it’s ALL in the diet. So if they see you take a nibble of something they believe is bad, well, they assume you eat like shit every day! It’s like us Crohnies feel sick because we’re making ourselves feel that way. That’s my favorite: being judged. Invisible means that most of us can carry on with life, work a full-time job, and have a social life. However, for me that requires eminent effort. I have never been able to just jump out of bed. In fact, I can sleep until the cows come home. I will wake up and feel like I’ve never even slept. Most people my age have the energy to climb mountains and party in Vegas. That’s where I struggle. I want so badly to be an average twenty-something, single woman. Before my medication and treatments I was far more outgoing. I was in better, physical shape. Once I began Prednisone, Apriso, Cimzia, Imuran, and Remicade, my energy deflated. Slowly I started watching it decrease. At my age it has an impact on my future. I want more than anything to maintain a career. I want more than anything to have a successful relationship and someday raise children of my own. Some people think they can handle dating a person with Crohn’s, and then later see that it’s not that easy. I know for a fact that my ex-fiancĂ© wanted a more eventful life. He was too young to realistically settle, and my disease was a lot to handle. I did my best to keep up at times. I knew that he secretly felt I would always exaggerate my symptoms. Men like to think we use Crohn’s as an excuse to get out of intimate situations. That’s far from the truth. When I experience pain, there’s nothing I want more than to take it all away. I’d rather be camping in Big Bend, or swimming in the ocean. Trust me. If anyone in the world needs to realize it’s an invisible disease, it’s your partner. The reality is that people don’t know about Crohn’s Disease. It’s not something that comes up in conversation, nor is it studied in the classroom. A lot of people don’t even feel comfortable discussing their disease. Crohn’s isn’t exactly something you can bring up for conversation at dinner. “Can you pass me the beans?” However, it’s not just the physical aspects of Crohn’s that affects our daily lives. Your friends and family may not even realize that Crohn’s causes depression. Depression can definitely be invisible. Some days you’re physically and emotionally drained from having this disease. Some days I get so angry having to deal with pain, and other days I’m just sad. Sometimes I don’t have the energy for anger. It’s easier said than done to take charge of Crohn’s and not let it rule your life. I would like to have a t-shirt for every day that explains how I’m feeling…. Monday: Dehydrated. Dizzy. Weak. Don’t talk to me! Tuesday: Body feels like it’s bathing in needles. Wednesday: Feeling ok…don’t tell me I don’t look sick! Thursday: Lunch didn’t sit well. Don’t talk about food. Friday: My gas will blow you away…literally. Saturday: I can’t party. Sunday: Sunday is not fun-day. Just sayin’…