It was March of 2020. I was at a 2-day Model UN conference, the second conference I’d been to that year. And while the event went smoothly, the following days were dominated by unexplained health complications. Almost every day that week, I was in pain. I would get stomach cramps, painful enough that they would require me to leave class, and no explanation as to why. But I was blissfully unaware, as most teenagers will be. I figured it was indigestion; that a little pain once in a while was normal. And when I would tell my parents, it annoyed me how worried they were, they seemed to get worked up over nothing. At the time, I didn’t understand the importance of communicating your health status quickly, even if it was seemingly harmless. Waiting only made things worse. The following week, the cramps worsened, and I started to bleed when I used the restroom. While that worried me a little, I was still not convinced that my health was an issue. By the third week, the pain has become unbearable. My symptoms had gotten too severe to hide it from my parents, and I finally told my mother. My mom is a doctor herself, so 20 seconds after I told her about my symptoms, I found myself on the phone with the pediatrician’s office to book an appointment.
During the appointment, all I heard was two doctors throwing around medical jargon that I had never even heard, much less was able to interpret. The way I understood it at the time, neither doctor knew what was wrong with me, and both agreed to just continue watching me. To my surprise, my body didn’t magically heal itself, and my symptoms continued and escalated in intensity for the next few weeks. I continued to get mild stomach cramps, as well as bloody stool. My mother provided this information to my pediatrician, who then decided to get stool studies to test for inflammation and a routine blood draw to see the breakdown of my blood (heightened types of cells or molecules could indicate different conditions). A few weeks later, the results of my tests had returned. I sat down with my pediatrician to look at them. She hypothesized that my symptoms were the result of a parasitic infection. She still didn’t know the cause, but, satisfied that the doctor had found some diagnosis for my problem, I returned home with some medication she had prescribed me. I thought that was the end of it, that I would take these pills for a day or two, cure myself, and return to a state of normalcy.
Instead, after 2 years I still continue to take medical treatment for IBD.
The first medication, flagyl, did not work, and my symptoms progressed with no improvement. This only proved to me and my mother that this problem was not going away anytime soon. My mother and I were determined to stay on top of my treatment, so after a week with no improvement, we reached out to a pediatric gastroenterologist, a gut specialist who could find out if my symptoms were related to my gut. After meeting the gastroenterologist, they ordered a colonoscopy to take a closer look at my digestive system. Preparing for the colonoscopy required me to drink a massive amount of a special water solution, Miralax, to wash everything out of my digestive tract. I tried to embrace the idea of having to perform all these tests. At the time, all these labs, stool tests, and colonoscopies seemed excessive and misguided. However, a few weeks later, the colonoscopy report came back and my gastroenterologist, my mother, and I went over the report together. The doctor told me that I had Ulcerative Colitis (UC), a type of IBD, Inflammatory Bowel Disease. It didn’t mean anything to me, but my mother got extremely worried, and immediately began asking clarifying questions. The two doctors discussed back and forth for a few minutes, while I sat on the side playing a game on my mother’s phone. The only thing I overheard was something about me needing to take new medication, Lialda, and that itself made me angry. To make matters worse, the pill regimen was not pleasant. I was required to take 4 of these large pills every night after dinner. I didn’t care much about the gut disease, but needing to take so much of a new medication infuriated me. Why do I need more pills? How will this fix things? Why can’t I just go back to normal? What I failed to understand at the time was that I was privileged. My symptoms were not nearly as bad as some kids with UC, and I had people in my corner with the medical expertise to understand and treat my condition.
I felt confused as ever. My diagnosis had been tossed around twice already, and it was about to escalate. A week after being diagnosed with Ulcerative Colitis, some results that had come back from the lab after the colonoscopy showed that I was more likely experiencing Crohn’s Disease. This sudden change to my diagnosis was not just a formality. It had completely changed my treatment. We were now required to aggressively attack the disease. I was prescribed yet another medication, rectal steroids.
One of the most difficult aspects of trying to maintain my gut health with IBD was the dietary restrictions that came with it. After I was diagnosed with IBD, my mother began researching and asking my gastroenterologist questions about what kind of diet would be right for me, but she couldn’t get clear answers since the guidelines were pretty vague. She had to do her own research and make educated guesses about what diet I should follow. One of the reasons that diet was so hard for me was because my symptoms were so mild that sometimes it was hard to notice patterns between my diet and my symptomatic responses. I could be eating something one day and notice my stomach start cramping, and the next day have no reaction to eating the same thing. Eventually with a month or so of trial and error, I transitioned to a fully vegan diet. Being vegan was incredibly hard because I wasn’t able to eat the foods that I loved, like Mac & Cheese, pizza, and ice cream, and I had to watch what I ate very carefully.
Another struggle that I faced was the inconsistency of my medications in treating my IBD. In my case, I went through about 4 ineffective medications before finding one that truly improved my well-being. After my first medication, flagyl, did not seem to help, and became newly diagnosed with Ulcerative Colitis, my pediatric GI prescribed me new medication, Lialda. After being re-diagnosed with Crohn’s, I was prescribed an additional medication, called rectal steroids. I felt some hope that my situation would soon improve. That medication didn’t work either. Apparently, that was not surprising. Little did I know that for a lot of patients the same medication doesn’t work as well with them as it does with others. Since everyone is unique in some way in their genetic code, their DNA, it’s inevitable that some medications won’t work for everyone. As I spent the next two months or so on an inadequate treatment regimen with frequent medication changes to see if my response improved, my mother soaked up medical journals on IBD treatment. During each one of the three subsequent visits to my GI doctor, I witnessed passionate arguments about what medication was right for me. Each one had an endless list of side effects. My mother explored every minute detail about different drugs, and brought this up with the GI doctor. Eventually, I was put on Humira, a biologic that weakens the immune system by blocking the tumor necrosis factor protein, or TNF. I have been taking it once every two weeks for the last two years, and it’s allowed me to live life completely normal. The weakening of the immune system part isn’t the greatest, but I’ve learned to accept it. My case wasn’t severe, and fortunately I was able to find a medication that works for me. But it took time, and while I was not patient at the time, I realize now that it was necessary. Having patience would have made the process easier, allowing me to better understand the situation at hand. I had the privilege of having a mom who is a doctor, who can pick apart arguments and see beyond the talking points of medical representatives. But if I didn’t have that, I know I would have needed to rely on my own inner drive to learn more about my condition. If for nothing else, researching more about your condition can be informative and interesting, even if it doesn’t directly lead to a magic healing pill. With the help of my family and other doctors, I turned my situation around. I hope I can do the same for you.
