After my doctor tried some short-term steroids with me and I didn't get better, he scheduled a colonoscopy for a few weeks later, in early June, to decide what step to take next. I was so ecstatic! I actually was not. However, as the colonoscopy approached I started feeling worse and worse and I was glad that I would find out what was really going on. Unfortunately for all of us, putting a camera up there is the only way to find out. This time I switched my preparation up and opted for yellow jello because green jello still brought bad backmemories. As usual, I overestimated my jello-eating abilities and the whole refrigerator was filled with jello for a week. The outcome of my colonoscopy was very different from the first. I always think of colonoscopy results like verdicts. After waking up from full sedation, the patient waits for the doctor to arrive with a booklet complete with pictures and a detailed report of the procedure. It's always nice to know that you (the patient) "tolerated" the procedure, if you know what I mean, as the report says. My doctor, obviously a different one from my Georgetown University Hospital GI, told me that I had pan-colitis, which means that the tissue throughout the entire colon was ulcerated. In other words, my colitis had worsened from mild left-sided UC to severe UC. Although many people would be disappointed with such a result, I was actually slightly satisfied. I felt like the doctors and I were finally on the same page about my health. I wanted to say, "Yes, and I have been miserable and in pain for a while! There is definitely something wrong here. And it took you almost a year to figure this out?" When I had left-sided UC, my doctor had prescribed mild drugs to treat mild UC. They never completely controlled my symptoms, and if it took a colonoscopy to change the type of drugs used, I was more than happy about it. Nonetheless, I did wonder if I had done something wrong: Had I not been careful about my diet or let stress get the better of me? My doctor assured me that the disease had simply "beaten" the medications and it wasn't my fault.
My doctor, Dr. Hosseini, presented me with several options. He said there were three routes of medications I could take. The first, remicade, was an infusion of immunosuppressants every 6 weeks to 3 months (essentially, low chemotherapy). Remicade has been around for a while and I knew people with UC who had taken it. The second, Humira, was the more recent version of Remicade and involved a self-administered shot of immunosuppresants every other week or once a month. Remicade is made from rat cells, while Humira is made from human cells, so it is generally considered to have fewer side effects. The third route was Azathioprine, a pill taken once a day that takes two to three months to even see if it works. Because Remicade requires a hospital visit every two months even in remission, I was hesitant. I did not want to have to coordinate hospital visits in foreign countries (I had not given up on living abroad). I also didn't like the sound of a pill that took at least two months to even see if it worked at all because I wanted to feel better as soon as possible. Although my doctor gave me all the information I needed to make the best decision, he really left it up to me. I opted for Humira despite my long-standing fear of needles. When I was just two, three doctors were once required to hold me down for a shot. You get the idea.
At the same time, my doctor started me on a 10-week course of Prednisone. I took 40 mg for 4 weeks, 30 mg for 3, 20 for 2 and 10 for 1. It has to be decreased slowly because the body can go into withdrawal otherwise (It's not an addiction; the body just stops naturally producing some of the components of the drug). Many people take Prednisone at different times in their lives, but is more rare to take such a high dosage for a long period of time because of its serious side effects. Prednisone made me feel better, however. I needed very little sleep and I was on fire at my internships. I was never normal, but I was functional. There are very few pictures of me on account of the most undignified chubby cheeks (or adorable. It depends on how you look at it). You happen to be in luck today because I'll put up a picture just to make you laugh. You will.
I was pretty excited about taking a new drug that had been very effective and had cool packaging with epipen-like disposable shots. Both Remicade and Humira are "front-loaded," which means that they are initially administered often and then decreased in frequency. A home-nurse came to my house to teach me how to inject myself - in the thighs and around the belly button, in case you were wondering. The first injection actually involved four at once. The worst part was that I had to administer them myself. After the first two I fainted but I finished the other two later in the day. It sounded like a stapler and didn't hurt until the medicine actually entered my muscles, at which point it hurt a lot for a couple seconds. It was actually kind of badass. The effectiveness of the drugs Remicade and Humira is clear within a short period of time. About a week later I thought I had responded because I felt absolutely fabulous for a couple days. I felt like I could do anything...or just like a normal person. Those days made me realize how truly sick I had been. The euphoria was short-lived, however, because I went downhill again. My doctor tried increasing the injections to every week but I was no better. It is important to keep in mind that the whole Humira process took almost two months of my precious time out of school when I was free to be sick. It took a while for the insurance company to approve it, for it to be sent in the mail and for me to take it long enough to be sure that it didn't work.
In mid-July, as I decreased my dosage of Prednisone and stopped taking Humira, I started to feel much worse. I stopped doing social things. The first bad night was on my 20th birthday, when my pain started to be significant and less bearable. To top it off, I had tried cutting out chocolate from my diet, so I couldn't even eat the three birthday cakes my friends had made for me. You can blame my parents for that. In fact, please do, because I clearly still hold it against them. Anyways, I could barely make the hour-long commute to my internships in San Francisco because I started to have terrible pain spasms shortly after I left home. The spasm would hit me, my muscles would just kind of collapse from the effort of trying to endure it, and I would crumple. I truly hated how much pain I had to tolerate every day. I finished my internships in early August, though barely. My doctor had sped up the decrease in Prednisone dosage because he wanted to try Remicade and didn't want me on both drugs at the same time. I definitely experienced some withdrawal each time I went down a dosage level, which meant that I was just incredibly tired for a couple days. For the first time, I actually canceled a social engagement because I felt like I just couldn't make it out of the house. That's was a big deal because I rarely cancel anything. Possibly in part because I started taking anti-spasmotics that can cause drowsiness, I started sleeping 13 to 16 hours per day. I lost the 15 pounds of water weight I had gained from Prednisone in a few weeks..and then kept losing more.
While my summer might sound the opposite of idyllic, I was emotionally stable. I still had endurance when dealing with pain and I was very hopeful that I would respond to medication. My first major setback was when Humira did not work, but I still had two more drugs to try. My hope sustained me through the increasing physical pain and it did not occur to me that I would get even worse or not go back to school. I tried to lead the most normal life I could despite the fact that I withdrew more and more every week from my friends and family. My adventures with Remicade are for next time.
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| Before. Just for comparison. |
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| 3 weeks in: The chubbbbbbb begins so let's celebrate by dancing in the streets. |
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| Meet Miss Chubster McChubster. Hopefully you find this as funny as I do. |
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