Diagnosed with Ulcerative Colitis (UC) in 2009, it has not been easy to grapple with this debilitating autoimmune disease as a college student. Although the details can be embarrassing to talk about, we are all humans at the end of the day. Hopefully this blog will help you understand what living with UC is really like and maybe even gain some perspective.
Me vs Colon
Sunday, May 8, 2011
The Saga: Part 7 - It gets better
Toward the two-month mark of azathioprine, my doctor, Dr. Hosseini, started preparing me for surgery in case azathioprine didn’t work. My general practitioner, Dr. Birnbaum, who is one of the most supportive and helpful doctors I have ever had, recommended that I go to UCSF for a second opinion (University of California at San Francisco), which has a worldwide reputation for surgery and general quality of care. Dr. Varma at UCSF told me that she doubted azathioprine would work since I had failed every other immunosuppressant and suggested either a clinical drug trial or surgery right away. I was still having serious symptoms like significant internal bleeding with high doses of prednisone, a bad sign. Most people are perfect with prednisone (although Dr. Hosseini reminded me once that some people do not even respond to prednisone, so I was lucky).The clinical drug trial was similar to Remicade and had an incidence of fatal brain damage. Dr. Hosseini took one look at me when I told him the situation and told me that I had been through too much to endure a clinical drug trial. I decided not to stop azathioprine because I only had two weeks left to the two-month mark and I thought it would be hasty and silly to give up so close the finish line. UCSF told me to call them if azathioprine didn’t work and I could have surgery in early December. Although consulting a surgeon was upsetting because it made surgery more real, it made both my mom and me feel better because we knew that it was a realistic option that would truly cure my disease. I would be in good hands at UCSF and unlike with Crohn’s disease, there was a way for me to get better one way or another.
As I started to get better from prednisone (keep in mind, I still was by no means functional and my functionality depended on high doses of steroids that were not sustainable) I wanted to leave my house after having been stuck there for over four months. And when I say stuck, I mean stuck. My dad had an architecture conference in Las Vegas so I invited myself. I wasn’t 21 and I couldn’t drink alcohol anyway but I didn’t care where I went as long as I went somewhere. I walked a little down The Strip but I couldn’t stand or walk for long. Still, the water fountain shows at the Bellagio were fantastic. When I walked down the street, I felt like yelling to the world, “I am walking down the street!! This is absolutely thrilling!” I wish I could recreate that feeling of being out in the world for the first time in so long and not being able to contain my joy. It’s almost how I imagine what it would be like to get out of prison; I had just been released from the prison of my own body. That absolutely pure happiness was so unforgettable that it was almost worth the traumatic months that preceded it. At the same time, the important luxury of health is being able to take those experiences for granted. I took a road trip with my mom to Oregon and I got to see beautiful Crater Lake. While I was in Oregon, I suddenly started to feel much better. I just felt…better. Although I was still in absolutely unbearable amounts of pain, I had more energy and I generally improved after morning bouts of sickness. I was a little more myself and my parents started to notice. I waited a while to tell anyone because I learned in August that crushed hopes of improvement are simply too devastating. I remember listening to the Beatles’ song “Here Comes the Sun” and thinking that my future was suddenly going to be much brighter. The azathioprine had started to work.
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