Surgery Indeed

Since my last post about surgery, I have gone back and forth about what to do. I have essentially run out of options for more drugs to take, and I need to take the plunge and take action to improve my life. After my second infusion of Remicade this spring, I have improved a little but I am still nowhere near where I need to be to avoid surgery. The more I improve, the more I realize I sick I was the week before. I started feeling dramatically better for a couple days and I seriously considered waiting through the summer to see if I would improve. Of course, I returned to my usual ill self. My parents came to visit and my dad was finally convinced that surgery is the wisest choice. He himself narrowly avoided surgery a couple years ago and hoped until recently that I would too. 

I went to see my doctor today and she told me that surgery was really the best option. I hadn't seen her since I decided on surgery and having her confirm my decision meant a lot to me. I was just hesitant to absolutely commit to such a risky procedure before talking to a physician in person who knows Ulcerative Colitis inside and out (literally ha...room for a nasty joke there involving colonoscopies). She told me that even if I get a little better, I would need to be 100% better to make the mix of medications I am on - the combination is linked to fatal lymphoma - worth it. Now I don't have to question whether I made the right choice when I have a good day because I am never going to be 100%. My surgery date is May 10th, so I only have 12 days left! I will finally be able to be the person I tried to be in the past year but just couldn't be. 

My sister came to visit a couple weeks ago and I realized to what an extent I had been pretending. The fact that I often don't feel well and I never know when I will suddenly feel worse tires me out and can discourage me. Although I may seem normal, I am not, and it takes all my energy to give that impression.  I can be "on" for a couple hours at a time but as soon as I am no longer with other people who I consciously try to seem normal for, I have no physical strength. For example, I can be crying from pain, go to dinner and pull myself together to seem perfectly normal, then go back home and cry some more. When my sister was with me all day, it became more apparent how flat a person I have become. It's as if I periodically have no personality because I am just so tired from living.

People used to call me the energizer bunny. I was always super cheery, ready to go do things and love life. Get ready!

This is my public commitment to surgery. Now I can't back out!

CUT CUT CUT

TedxGeorgetown Video

http://www.youtube.com/watch?v=HZb_ufGfmtw

The Saga: Part 4 - It never ends

When I last left off, I was ramping down my Prednisone dosage in anticipation of starting Remicade infusions. I had to get a previous negative TB test result from Georgetown and a chest x-ray to show that my lungs were fine. If someone receives Remicade with TB already in their system, they often start having TB symptoms.  As I have mentioned before, Remicade is an infusion of immunosuppressants normally administered every three months in a hospital visit. When I showed up at the doctor's office for my first infusion in the first week of August, I was in very bad shape. While I hoped with all my heart that I would soon feel better, it seemed like nothing worked or ever would. In typical Emily-fashion, I managed to bike three miles to the doctor's office for my infusion (it was flat and still took me 40 minutes). I persuaded the nurses not to give me Benadryl through an IV - Benadryl is used to reduce fever frequently induced by Remicade - because otherwise I would crash on my way home. They didn't have much choice.

At that point I started losing my emotional composure whenever I went to the doctor. When I actually had to think and talk about all the pain I was going through, it made the experience seem more real. It was hard to explain to a concerned nurse why I looked like I was about to cry all the time. If I had been honest, I would have said, "I feel like my life is falling apart and there is nothing I can do about it."  Tactfully, I usually just told them that I was in pain - true, but not something that would usually make me cry in front of anyone. Sometimes I thought, "Is this really happening to me?" I almost felt like I was losing track of who I was because the only things I thought about were pain, sleep, where the bathroom was, and trying to pretend like I was not thinking about only those things. I honestly don't remember most of August. I slept, took pain killers, ate a little, took anti-spasmotics and read Roald Dahl books. My ability to read greatly decreased and I went back to books that were easier.

At first Remicade completely stopped my system. I just didn't move much. I was in significant pain unless I was laying down. The first of my walking troubles commenced. I was able to walk a couple of very very slow blocks at a time. My uncle came to California to visit me and he realized that we couldn't really do anything together. I wasn't just altered physically, but also emotionally. I was in a very different place than the people around me so I just didn't say much because there wasn't anything to say. Remicade is front-loaded, like Humira, so I was scheduled for a second infusion two weeks later. I got up early so that I would feel better by the time of the infusion but I still wasn't used to the incredible pain that tore me apart every morning. The only pain killer strong enough to reduce the pain was morphine, which was obviously not an option at home. My mom finally picked me up, brought me to the car and told me that I would be okay eventually. In addition, I was bleeding what seemed like buckets of blood. All I saw was blood blood blood. It was like my insides were just dying. I thought, "How could I bleed that much every day and still be alive?" Sometimes, the body is surprising. It can seem like it is killing itself, but can also stick it out even when your mind feels like you're done.

Although Remicade definitely made me feel different, it did not make me feel better. My doctor then first started discussing surgery with me. Since I was in such bad shape, he thought that surgery was the next option. I hadn't yet tried the pill that takes three months to work, but I simply did not have three months in my condition at that time. First, however, my doctor wanted to do another colonoscopy to make sure I hadn't healed at all before giving up on Remicade. Of course, I was overjoyed. My third colonoscopy in less than one year! Hurrah. This may sound odd, but I actually couldn't wait to be sedated. I was miserable when I was awake and woke up every hour or so from pain when I managed to get to sleep. I could get no relief and the idea of not being conscious was quite appealing. Because my body was so exhausted, the preparation was much more difficult than it had ever been before. I had no endurance and went into sedation in tears. I saw no way out. When my mom and a nurse were talking as they waited for me to wake up for sedation (for some reason I didn't wake up for hours), the nurse took one look at me and told my mom, "She's not going back to school." 

Surprisingly, my doctor found that I had healed significantly, just not on the left side, where I still had severe ulceration. That was what was causing all the pain. It seemed like Remicade was working and he even recommended that I go back to college because he predicted that I would just get better and better. He said that taking a semester off would be the "most cautious" approach and doubted that I needed to. Perhaps because I had been minimizing my symptoms, I simply did not agree with him.  There was no way I could go to class or get anything out of the college experience in such a state. I spent hours every day lying on the floor waiting for each pain wave to slowly recede from my body. I also didn't go anywhere except the doctor's office. Jigsaw puzzles were as advanced as my cognitive abilities went. How could I do function at school? Although I did seriously consider going back to Georgetown, after talking with my dean, I realized that I was in complete denial about how sick I was (Is this a recurring theme?). I would go back to school when I could, but my health was the absolute biggest priority. I thought that maybe if I got better a month or two later, I could have an internship and take advantage of the situation. It was the first time I couldn't do something that I wanted to do on account of my health. I felt like I was letting something go and losing control. However, I also told myself that everyone faces obstacles in their lives. Many people my age haven't faced such challenges, but most of them eventually will. My time came earlier, and in some ways, I am all the better for it.

My Story: The Saga Part 3

Although I mentioned in the second installment of my suspenseful saga that I dramatically improved in the spring of 2010, it doesn't take magic skills to guess that things went downhill. I left Georgetown in May and headed home to two promising summer internships. My dad had suggested that I set up an appointment with a GI even though I was doing well just to establish a relationship in case I felt worse throughout the summer. Surprisingly (or maybe not) internal bleeding returned the weekend I came home during a trip to visit a friend at UCLA. Bleeding is a key sign that things are not going well and immediate action needs to be taken. I was upset but had no idea what lay ahead of me. 

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. 

Before. Just for comparison. 

3 weeks in: The chubbbbbbb begins so let's celebrate by dancing in the streets.

Meet Miss Chubster McChubster. Hopefully you find this as funny as I do. 

My Story: The Saga Part 2

When I last left off, I was well into my first semester in college with Ulcerative Colitis, the fall of 2009. I was on the pill Lialda, used to treat mild to moderate UC, and I was in denial. To some extent, it is impossible to live with a chronic disease like UC without being in denial, but as with all things, moderation is essential.

Although we usually think of medications as something that make us feel better, I have learned that they can be tricky and their side effects can even outweigh their benefits. After months of terrible morning nausea, I got fed up and called my doctor and demanded some pills immediately (gangsta style, of course). He called something into CVS, I picked it up and took one the next morning. It didn’t do much so I took another one. The bottle mentioned possible drowsiness, but I didn’t pay much attention because benadryl doesn’t even make me drowsy. Well, this nausea medication made me VERY drowsy. I didn’t know what was happening to me when I started falling asleep in my afternoon classes and stopped making sense. I ended up on a bench outside my dorm and luckily my roommate found me. She scolded a guy who was deeply amused by my state but not doing much to help me (you know who you are) and took me home. I then slept for 24 hours. I did some research and found out that nausea and sleep are closely related in the brain and almost all nausea medications cause significant drowsiness. Last fall my doctor in California finally gave me a nausea medication used for chemotherapy that doesn’t cause drowsiness. Don’t ask me why it took a year for doctors to give it to me!

Because Ulcerative Colitis is an autoimmune disease, symptoms can reach well beyond the typical issues (that you would prefer to not think about) associated with the digestive tract.  As the fall semester neared its end, I started to have pains in my left side below my rib cage. At first it was mild and just annoying but it soon progressed to a completely consuming pain that just made me pass out because I couldn’t cope with being awake. My roommate took me to the ER and I was given some narcotics diagnosed with costochondritis, a loose term for chest pains that mimic the symptoms of a heart attack. Thankfully it eventually went away with time and (unfortunately) suffering. I later found out that costochondritis is linked to autoimmune diseases…and surprise, I got it again eight months later! While it wasn’t a huge deal and the pain didn't compare to UC pain, it was just another example of the vast effects an autoimmune disease can have. The worst aspect about it was that I didn’t know what was wrong with me or when it would stop. The second time around, I knew it would eventually go away so I just waited it out.

My eating issues continued. For days at a time I didn't eat and just drank protein shakes because I couldn't stand food. It was a terrible thing but when food is literally a poison and you have no appetite, there's not much incentive to dig in. 

Needless to say, when finals were over I was a complete mess. At home I was able to recover from a UC flare-up caused by the stress of finals, costrochondritis and a sinus infection (to top it off). That winter break I was actually in great health UC-wise. I was able to go on some hikes that I barely even thought twice about, which shows how we take our health for granted as soon as our bodies are able to forget the trauma of pain. I can only hope that once I am better I can treat every day without pain as a day given back to me after struggling for so long.

I was still nowhere near remission as I went back to school for the spring semester of 2010. I was in little pain, however, which makes a big difference for how functional I could be and my nausea improved. I lived in the middle of campus so I just went back to my room between every class and rested frequently. I went to the bathroom about 10 times a day but I just adapted to it. I did my best to ignore cramps and spasms because I didn't really have a choice. Most people didn’t even know I was sick at all, much less how sick I actually was. In March and April I had very few symptoms and I began to hope that I had finally entered into long-awaited remission. I traveled to New York and Providence and walked all day for days. Just to give you an idea of what a big deal that was, later that year I got so sick that I couldn’t even walk one block. It’s all relative!

I was a moving box for Halloween...get it?

Going out in the snow with no body fat or food in my stomach: bad idea. I fainted. 

I even rowed a boat in Central Park

Springtime in New York: I don't need narcotics to photobomb. 

I used to be a wimp

I still don't like getting my blood drawn but thankfully I have moved on from the phase that made me seem like a crazy person. In fact, my veins are something to be proud of. A nurse once told me I had "party veins" and started to dance around. Then I texted my friend and got on textsfromlastnight...to date, still one of my most significant accomplishments.