by Alexis Gomez (California, U.S.A.)
Two side-by-side photos of Alexis, a young woman with medium-brown skin and dark brown hair. There is a graphic of a curvy yellow arrow, pointing from the first photo to the second. The photo on the left is from Alexis’ freshman year of college, after just being diagnosed with IBD. Alexis is standing in front of a wall of ivy, wearing comfortable clothes. She is smiling, but looks pale and tired, with a bit of prednisone “moon face.” The photo on the right is from Alexis’ college graduation. She stands in front of a walkway with many arches, wearing a blue graduation cap and gown, with a yellow stole, and is smiling widely.
When I was younger, I had a vision of what my college experience would look like. It was more or less in line with what I saw in movies and TV shows – living away from home, making lots of friends, joining tons of clubs, going to clubs, perhaps finding the love of my life, maintaining my straight-A academic excellence, and knowing without a doubt that my future was secure.
I had always been a planner, always thinking ten steps ahead of where I was in the present. For as long as I could remember, I prided myself on being independent, meticulous, and motivated to succeed. I thought I had it all figured out, and that all I had to do was check off the boxes of my to-do list toward success. It was so simple, so straightforward… until it wasn’t.
What I never could have predicted or hyper-planned for was being diagnosed with a chronic illness at the age of eighteen. Shortly before starting my first year as an undergraduate student, I began experiencing symptoms of IBD. And throughout the course of my first quarter at school, my symptoms worsened. I had constant abdominal pain, urgent and frequent bowel movements with blood up to ten times a day, and a deep sense of shame that stopped me from telling anyone. Whenever I was with my friends and I had to use the bathroom, I’d laugh it off and say I just had “tummy problems.” The thought of telling anyone what I was actually experiencing felt terrifying because I didn’t have a clear answer for what was happening. I felt like it was my fault that I was experiencing these gastrointestinal issues; like I had somehow inflicted this on myself, and that just maybe it would go away if I ate healthier and prayed more.
As someone with a family history of IBD, there came a point where I knew deep down what was happening. I had been in denial for several months, thinking that there was no way I would have to live with a chronic illness forever. It couldn’t happen to me, I thought. Why me? This wasn’t what was in my perfectly thought-out and extensive plans for an amazing future. With every acute misdiagnosis from my doctors, I simultaneously felt frustrated but also held onto hope that I’d just suddenly start to get better.
During finals week of my first quarter of undergrad, I couldn’t hide or ignore my symptoms anymore. The burning pain in my abdomen reached a new level of severity, and I was overcome with weakness and fatigue. I could barely eat anything, and I couldn’t stand up without getting heart palpitations and being out of breath.
My mom helped me schedule an appointment for a colonoscopy to finally see what was going on and to confirm what I had been suspecting. The weeks I had to spend waiting leading up to the colonoscopy were tough. I rapidly lost weight (over 40 pounds within 2-3 weeks), I could barely get food or liquids down without vomiting, I would spend hours on the toilet trying to get some sort of relief from my abdominal pain (often with no success), my mouth was perpetually as dry as the Sahara, my eyes looked bloodshot and inflamed, and I couldn’t walk anymore. As I waited, I felt my autonomy and my identity slipping away from me. How could I be the daughter whom my parents knew was responsible, and who they didn’t have to worry about? How could I be the older sister to my younger brother, who always looked up to me, the older sister who could always provide a listening ear, comfort, and advice? I didn’t know who I was when I couldn’t even serve myself food, put my plate in the sink, walk myself to the bathroom, bathe myself, or brush my own hair. I didn’t know who I was without my independence. And I felt an overwhelming wave of guilt for putting my loved ones in a position where they had to do everything for me and see me suffering every single day.
I remember being in the recovery room after my colonoscopy and hearing my doctor say something that would change my life forever. In an oddly cheery tone, he said: “Well, Alexis, it looks like you have Crohn’s Disease!” I remember being 1) shocked initially, 2) put off by his cheerfulness, but also 3) relieved. Hearing that I had Crohn’s was scary, but I also knew I finally had an answer. I didn’t have to hide behind the curtain of the unknown or the inability to explain why I had the symptoms I did. I knew Crohn’s was an autoimmune disease, meaning that my body had one day mistakenly begun to attack its own healthy cells. It wasn’t just something I ate, it wasn’t going to just go away on its own, and it wasn’t my fault that it happened.
Although I was fortunate to respond well to the first biologic treatment I tried, my Crohn’s diagnosis came with other complications. The several weeks spent with untreated chronic inflammation and prolonged immobility led me to develop blood clots (deep vein thrombosis, aka DVTs) that also traveled to my lungs (pulmonary embolisms, aka PEs). I remember being hospitalized during my second quarter of undergrad, in the middle of midterms, and frantically emailing my professors for extensions as I was in the ICU.
About a month after my hospitalization, my hair began falling out in chunks. It felt like I had reached a new low, and I couldn’t recognize myself anymore when I looked in the mirror. Even though my Crohn’s was responding well to my treatment, the other comorbidities that came with it, though temporary, were just as difficult and scary to navigate. Throughout this period of time, I had somehow managed to continue being a student, attending lectures and discussion sections through Zoom during a COVID spike in California when students were given the option to attend classes either online or in person. However, as spring quarter rolled around, and students at my university were required to be back in person, I knew I wasn’t well enough to return to campus. I had to withdraw from the university for the quarter – a decision that wasn’t easy. Still being a student had felt like the last bit of normalcy in my life. Now, all I could focus on, all I had to focus on, was my health.
Throughout the spring and summer, things gradually got better. I had fully weaned off prednisone and was in remission with my biologic. I was able to eat again and my bowel habits were great. My blood clots were being monitored as I was on anticoagulant medication. I was going to physical therapy to relearn how to walk, and with every week, my gait looked and felt better. My steroid ‘moonface’ had subsided and finally, my hair started to grow back.
By the time fall came around, my health seemed to have made a miraculous comeback. All my labs were fantastic and my doctors told me that I was doing everything right. My friends and family would tell me how they had been thinking of me, praying for me, and how they were so happy to see me better. It made me feel proud of myself and my resilience. I felt grateful to be alive.
I started to prepare to go back to school after having been out for six months, which felt like a long time to me as someone who had always prioritized school and getting good grades since I was a child. I wanted to leave the dark period of my life I had just gone through behind – a period where I had felt so isolated, helpless, angry, depressed, and like I didn’t want to be here anymore. I wanted to move forward, to be normal again, to show everybody around me that I could overcome it all.
I started my second year of undergrad by enrolling in more classes than I had before and starting a new job. I went full-force back into the real world, feeling like I needed to make up for lost time. I didn’t want to keep feeling behind compared to my peers. Without realizing it, however, I was putting pressure on myself to be some sort of inspiration. I wanted to prove to myself that I could live the life I had envisioned, regardless of Crohn’s. For the first few weeks back at school, I was energized. Then, the workload I had set for myself became difficult to manage. I found myself coming back to the room I was renting with fatigue that I couldn’t just sleep off. Sometimes, my brain felt so foggy that I struggled to concentrate on my homework. I noticed I felt especially tired the day after my injection every two weeks. There were days when I would lie in bed and ruminate about everything I had gone through. Even though I was back in school, I had a job, and I could spend time with friends again, life still didn’t feel normal. I had a hard time completing tasks, staying motivated, and as the school year went on, my grades started to slip. I felt embarrassed that I was still having a hard time getting back on track. I still felt like there was a dark cloud looming over me most days, despite the fact that on paper, my physical conditions were under control. I hadn’t expected that even after the worst of it had passed, the trauma would still be there, and I would still grieve my old self before Crohn’s. While my doctors had equipped me with the treatments needed to manage my physical ailments, what l wasn’t prepared for was the effect being chronically ill would have on my mental health and well-being.
It took therapy, trial and error, attending peer support meetings, and time for me to get to a point where I recognized that it was necessary for me to scale back on how many units I was taking each quarter, and that it was okay to let others know I was struggling mentally and ask for help. The latter is still something I find challenging at times, but I’ve made progress and continue to work on it!
I’m not immune to bad days or weeks, but overall, I’ve managed to reach a point where I don’t always feel that shadow of sadness I did for a long time. Although the past few years may not have looked like what I expected growing up, I still managed to finish my degree in two different majors, not just within four years, but a quarter early! My first- or second-year student self would be shocked and perhaps not even believe it. My graduation ceremony was just a few weeks ago, and it prompted me to reflect on my journey of being diagnosed with Crohn’s as a young adult in college.
My undergraduate years were full of life-changing experiences with lots of challenges. But I’m lucky that those years still gave me good memories to look back on and friendships that I anticipate will last for many years to come.
Over the past few years, I’ve grown more comfortable sharing my diagnosis and experiences with others. Having Crohn’s has made me more appreciative of the good times in life because I know good health and tomorrow are not always guaranteed. I’m also lucky to have found a community of people who understand the roller coaster that is living with IBD/a chronic illness. I hope that any other person going through something similar who may be reading this knows that they are not alone.
My progress hasn’t always been linear, but ultimately, I find myself at a place where I accept what life has thrown at me and where I recognize that I can and will be able to navigate life’s future hurdles. I surrender to the fact that I won’t always be able to control what comes next, but I know that difficult times will pass because they have before. I might not always have the answer to what the future has in store for me, but I know I’m proud of how far I’ve come and where I am today.