Posted by Rishi Mehta on July 30, 2019
Hi, my name is Rishi, and I’m a 19-year-old Medical Sciences undergrad as well as a Student Researcher at a Children’s hospital. I was diagnosed with Ulcerative Colitis in August of 2016, but most people outside of the IBD community have no idea I have IBD. In addition, many people do not know I lived in the National Radio Quiet Zone for a month last summer: no internet, no cell phone service…nothing!
My diagnosis was the first time I had ever heard about Ulcerative Colitis and even to this day, it continues to raise unanswerable questions. I like to think that it’s not just a coincidence that the colon is shaped like a question mark. Over the past three years, living with and receiving treatment for IBD has made me realize that it’s difficult to simply be a kid when you’re not feeling your best. At the same time, these same experiences have been transformational in enabling me to realize how I might integrate all that I’ve learned from my personal journey with IBD, my love for science, and my goal of helping people return to doing what they enjoy, into a cohesive journey.
I am interested in pursuing an MD/PhD to treat and study IBD. However, the dilemma that this long and arduous academic journey raises is how will I keep my temperamental IBD under control? Many well-wishers, including my family members, have encouraged me with pursue a different career path for this reason. It took years of putting myself in others’ shoes to help me fully realize that their recommendations came out of genuinely caring for my health and well-being. But even today (and likely moving forward) I don’t anticipate ever giving up the opportunity to positively impact IBD patients through a patient’s perspective. As I look to the future, I am a combination of enthusiastic and anxious about embarking on this journey.
I have also realized that I can better manage my health if I am informed about the science and research surrounding my condition. As a science-geek, I have found science to be the voice of reason that spoke to me through the ever-present anecdotal and emotional input from well-wishers in my environment. Moreover, I currently conduct research on IBD and other chronic digestive diseases at Cincinnati Children's Hospital, while continuing to learn about IBD through my own ongoing treatment that consists of medications, infusions, and appointments. I have found research to be surprisingly effective in offering solutions to my day-to-day dilemmas that had once been “unanswerable,” such as choosing what foods to eat, or how to manage medications with my sleep schedule.
I first heard about ImproveCareNow (ICN) through the principal investigator of my lab who recommended that I get involved as an avenue to share my research in the future and to scale-up my research project to involve more people. While I was perusing the website, I discovered the PAC and was immediately attracted to the idea of connecting with others who also have IBD through a larger network made up of dozens of institutions. The PAC has given me an outlet to engage with IBD from more than just a research perspective, enabling me to contribute to the creation of toolkits and to work with other similarly-aged patients who have a shared set of experiences. I currently serve as the PAC Representative for the Research Committee through which I provide patient input during ICN’s internal review process for new IBD studies.
Moving forward, I hope to continue learning more about IBD from a variety of patients, parents and professionals so that I can better focus my future efforts based on present input. I hope to work with the PAC and ICN to help care providers develop a nuanced understanding of the patient experience so that together we can shape better shape patient outcomes. And lastly, I hope to push the field of IBD treatment and research so that one day, we will no longer think of the colon as a question mark.
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