One Step (eBook)

Chapter 1

His office was a lot bigger than other physician offices that I visited. The walls were covered with academic degrees and credentials, and his desk, which took up half the room, was oddly barren except for a computer. A large floor to ceiling bookshelf, filled with medical books ranging in topics from intestinal diseases to colorectal surgical techniques, lined the wall behind his desk. While I was busy reading the titles of the books, the surgeon walked into the room.

“So, you’re Tara. I’ve read all about you.”

“All good things I hope.”

I solicited a small chuckle from the surgeon with that remark. Since this appointment was a surgical consultation to determine if I would be a good candidate for the ileal pouch-anal anastomosis, or J-pouch, surgeries, I knew my medical records contained anything but good things.

I was first diagnosed with ulcerative colitis (UC) during the summer of 2012 at the age of twenty-two. Before my first onset of symptoms, I thought of myself as invincible. I just graduated from college and was slated to start graduate school in the fall at the Massachusetts Institute of Technology (MIT). In order to live in the same town as my soon-to-be graduate school, I spent the summer working at a startup company in Boston. During the weeknights, I would head to a Taekwondo school, where I would competitively train in sparring with dreams of winning my first noncollegiate Taekwondo match. On the weekends, I would spend the mornings going on long runs. It was a great way to discover new parts of the city while enjoying the beautiful summer weather. During the evenings, I would enjoy attending social events with my friends. Life was perfect, and I thought nothing could possibly go wrong.

Then, one sunny July morning, I woke up to what I thought was a nasty bout of the stomach flu. At first, I had nothing but diarrhea, urgency, and a lack of appetite. By the third day, however, blood started appearing in my stool. I naively believed that over time the problem would clear up on its own, and as a result I continued to go about my life normally for a month. During that time, I grew increasingly more fatigued. At first, the fatigue was only noticeable after exercising. I found myself out of breath at points during a run or during a Taekwondo workout when I normally would not be. By the end of that one month, however, the fatigue became so crippling that I did not have the energy to get out of bed in the mornings. After being convinced by my friends and family that the problem would not go away on its own, I went to the emergency department of a local hospital and was immediately admitted as an inpatient. An emergency colonoscopy quickly revealed an inflamed and ulcerated colon, leaving the attending physician with little choice but to diagnose me with a chronic disease that I had never heard of before. Luckily, a three-day course of intravenous steroids and a few doses of mesalamine made me feel good as new, and I was able to return to my normal life with nothing more life altering than needing to take a few pills on a daily basis.

Because I had never heard of my new lifelong illness before being diagnosed, I wanted to educate myself with basic information about the disease, including information on how common the illness is, what causes it, and what the typical treatment plan is. After reading a few medical journal articles on the topic, I found out that UC, a subcategory of inflammatory bowel disease (IBD), is not an uncommon condition. It has an incidence rate of nine to twenty cases per 100,000 per year, and has two main onset peaks: one between the ages of fifteen and thirty years and a second between the ages of fifty and seventy years (Lynch & Hsu, 2020). While the specific cause of IBD is not known, it is thought to be autoimmune in nature, and there does appear to be a genetic component associated with it. According to an article published by the National Center for Biotechnology Information (NCBI), a patient who has a first degree relative to UC has a four times higher risk of developing the disease when compared to the control group (Lynch & Hsu, 2020).

While Crohn’s disease, the other subcategory of IBD, can affect any part of the gastrointestinal tract, UC usually only involves inflammation of the mucosa layer, or innermost lining, of the large intestines. Depending on the severity of the disease, this inflammation could only affect a small portion of the colon and only be limited to the rectum, or it could extend proximally up through the descending, transverse, and ascending colon and stop at the terminal ileum, or the connection between the small and large intestines (Lynch & Hsu, 2020). Symptoms of the disease greatly depend on its severity and location within the large intestines, but they may include diarrhea, abdominal pain and cramping, blood in stool, fatigue, and weight loss. In addition, extraintestinal symptoms, such as joint pain and eye inflammation, is also not uncommon (Head & Jurenka, 2003).

In terms of a typical treatment plan, at this point in time UC cannot be cured. However, it is possible to control the symptoms of the disease with medication. As a first line of response, physicians often prescribe corticosteroids in order to quickly induce disease remission in patients. However, due to both its short- and long-term side effects, physicians often try to taper patients off of corticosteroids quickly, and replace them with a longer-term medication, or combination of medications, with a lower side effect profile. (Meier & Sturm, 2011). Because each patient’s disease course is different, physicians often prescribe the different Food and Drug Administration (FDA) approved medications in a stepwise fashion. For mild to moderate disease activity, 5-aminosalicylic acid (5-ASA) is typically the first maintenance drug prescribed to patients. In the event that a patient does not respond to 5-ASA, or if disease activity worsens over time, physicians often move toward prescribing the second class of medications: immunomodulators (azathioprine or 6-mercaptopurine). In a similar fashion, if the immunomodulators prove ineffective over time, physicians will move on to the third class of medications: biologics (Meier & Sturm, 2011). Recently, several different classes of biologics have been FDA-approved for use in UC patients. These classes include anti-tumor necrosis factor alpha (anti-TNF) (infliximab [Remicade], adalimumab [Humira], and golimumab [Simponi]), integrin receptor antagonist (vedolizumab [Entyvio]), interleukin-12 and interleukin-23 antagonist (Ustekinumab [Stelara]), and Janus kinase (JAK) inhibitor (tofacitinib [Xeljanz]) (Park & Jeen, 2015).

While it is true that each patient’s disease activity is different, the statistics are favorable that a patient’s symptoms can be controlled by medication alone. To put numbers on the efficacy of the different biologics, the following percentage of patients achieved a clinical response after eight weeks of treatment when compared to placebo: 69 percent for Remicade (Park & Jeen, 2015) and 61 percent for Xeljanz (D’Amico et al., 2019). After six weeks of treatment, the following percentages of patients achieved a clinical response for the following biologics: 51 percent for Simponi and 47 percent for Entyvio (Park & Jeen, 2015). The numbers are also favorable so that once a patient achieves remission with a biologic, remission can be maintained. For example, one study published in the Journal of Crohn’s and Colitis demonstrated that of the patients who achieved remission with Entyvio, 88 percent were in remission after 104 weeks (Loftus, 2017). Finally, there are also several medications currently undergoing the process of becoming FDA-approved for UC. For instance, Phase II Clinical Trial data was recently published on an S1P1 receptor modulator drug called Ozanimod. At the end of the clinical trial, it was found that Ozanimod generated histological remission rates of 46.3 percent compared to placebo at Week fifty-two. In addition, 82.7 percent of the patients who had an initial response to the drug were still in remission at week 200 (Sandborn, 2021).

However, while the statistics are favorable, it is not guaranteed that patients who are diagnosed with UC can achieve disease remission through medication alone. According to a study in the Journal of Therapeutic Advances in Gastroenterology, up to 30 percent of patients do not have an initial response to biologic treatment, and about 10–20 percent of patients per year lose response to biologic treatment after having an initial response (D’Amico et al., 2019). In addition, even with the current arsenal of available medications, up to 15 percent of patients will require a colon removal surgery in order to alleviate symptoms or to prevent colon cancer (D’Amico et al., 2019).

Unfortunately for me, I was part of the 10–20 percent statistic who lost response to biologic treatment over time. As the days since my diagnosis turned into eight years, I went through what felt like a never-ending cycle of being prescribed a new drug, experiencing symptom relief for a few months, then watching as my symptoms slowly returned. Despite this cycle of disease activity, I was still able to live a life, albeit a life with modified goals. I was able to graduate from MIT and work a full-time job, and during the periods when a medication was working, I was able to train and achieve some of my goals, such as running a marathon and an ultramarathon. But knowing that a medication would fail sometime in the future placed a heavy mental toll on my mind, and I found myself unable to plan or look forward to a longer-term future in fear that my medication would stop...