I'm Feeling Sick Again and Now It's Time to Open Pandora's Box
Twelve years ago I was diagnosed with ulcerative colitis (UC), a type of inflammatory bowel Disease. I was 34 years old and started experiencing symptoms just a few months after I had given birth to my first child, my sweet baby girl. As soon as I was diagnosed, I researched UC and learned that this disease that had appeared so suddenly would be with me for the rest of my life. A lot of feelings bubbled up in those initial weeks…fear, sadness, anxiety…but what I mainly recall feeling was a commitment to doing whatever was needed to “fix” the problem and move on. I’ve always been a very results-oriented person, and I tackled UC with the same focus and work ethic I would any other project. Little did I know how naive that thinking would turn out to be.
I had an allergic reaction to the first medication, which landed me in the hospital for three days. This marked the beginning of a four year trial and error process to bring my UC into remission. Sometimes a medication would work just long enough to provide a glimmer of hope and normalcy back to my life, and then symptoms would return and I’d be right back where I started – but with one less treatment option on the table.
Life was a cycle of doctor appointments, Prednisone, colonoscopies, ultrasounds, CT scans, MRIs, and even two bronchoscopies. During a period of digestive calm and stability, I decided that my window of opportunity to have another child was closing and it was now or never. Because of the trauma UC had caused to my body and reproductive cycle, my first step was to get the OK from my doctor and OB/GYN to move forward. With their blessing and a referral to an endocrinologist, I was lucky enough to get pregnant quickly, remain healthy over the next nine months, and give birth to a beautiful baby boy. When I look back at pictures of my family at the hospital after his birth, I see the purest joy on my face. I was completely living in the moment and so profoundly grateful for my family, my life, and my health. It was one of the greatest moments of my life.
Unfortunately it wouldn’t last. Months after my son’s birth, UC symptoms came roaring back and this time it rocked my world to its core. I dropped all the pregnancy weight plus additional pounds in a matter of months. My symptoms spun out of control and I had to quit my job and could barely leave my house for the next three months for fear of being too far away from a bathroom. Even walking down my driveway to check my mailbox was no longer a given on some days.
Things came to a head when my doctor broached the topic of surgery to remove my colon. Even as frail and exhausted as I was, I wasn’t mentally ready for that talk. In the same conversation, however, he also referred me to a specialist at a research hospital to explore any other options that might be available. After waiting months to get an appointment, the day finally arrived and that 30 minute visit made a life-changing impact on my health. That doctor prescribed a combination of medications and within one week of my first infusion, I saw a positive change. Weeks stretched into months and I got stronger, gained weight, and my next colonoscopy came back normal. Remission achieved! Even my gastroenterologist was surprised by such dramatic results.
Years passed and new people I met didn’t even suspect I had UC. Aside from the infusions every eight weeks, it became easy not to think about the disease or when it might resurface. It was as if I put all the pieces of my life that related to UC into my personal Pandora’s Box, taped it tightly up, and pushed it to the back corner of my closet. I knew it was there, but didn’t dare open it.
Until now. After seven years of remission, I started feeling a little off several months ago. It wasn’t terribly bad at first, so I waited awhile before telling my husband because saying it out loud would make it all too real. I knew I would have to pull that box out of the closet, dust it off, and reopen a chapter of my life that neither he or I wanted to revisit. But eventually, as things got worse, I did open up to my husband and make an appointment to see my doctor. I’ve had some initial blood testing done (which came back OK) and two days ago I had a CT scan to look at my small and large intestines. The results are still pending. As I wait for that phone call, I’m struck by how familiar the situation is, but how different I am.
I’ve been dreading opening that box for so long that when I finally did open it, it turned out to be a huge relief to look inside. Memories of the fear, isolation, guilt, and anxiety that were trapped from those years are free and running loose in my head and starting to come out on paper. I’ve never felt the need to write about my illness before, and now it feels like it may be the most important thing I’ve done in a really long time.
What’s different now? I honestly don’t know for sure yet. Maybe it is just getting older, or maybe it is knowing that my kids will see and understand whatever lies ahead. What I do know is no matter what happens, I’m done with the box. It’s time to change my relationship with this disease yet again, leaving behind my instinct to store my fears and anxiety privately away. Talking about chronic illness isn’t pretty. It’s messy, uncomfortable, and heartbreaking at times. But it can also be comforting, funny, and an opportunity to connect and grow. To quote the psychologist Carl Jung, “I am not what happened to me, I am what I choose to become.” It’s time for me to see what that could be.
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