“Excitement and nervousness for my freshman year of college was centered around leaving home, meeting new roommates, and studying at a competitive tier-20 school. Not once did I imagine my health would become the biggest issue, deeming these initial pressures irrelevant. Dealing with months of sickness and an eventual autoimmune diagnosis was not something discussed during the flamboyant, class of 2020 welcome weekend or the year-long, required ‘transition successfully to college!’ course. After all, when you’re young, you’re healthy. I was warned about the freshman year plague that wreaks havoc through the petri-dish that is dorm life and told where to go for mental health counseling if exams became too stressful. I was not told what to do, how to continue, or who to turn to if I was suddenly forever ill.
When I started college in 2017, life was all possibility. I worked hard during high school to broaden my life experience beyond the small, midwestern town I’d lived my first 18 years. My childhood carefree, my dad was an engineer and my mom stayed home, but both parents were present for every one of my siblings and I’s school events, basketball games, and weekend activities. I attended a Catholic grade school, mountain biked with my dad, baked bread with my mom, and created whimsical stories in my head based on the books I was constantly devouring. In high school, I focused on academics, certain higher education was the ticket to achieving my dreams of becoming an attorney, traveling the world, and using my talents to give back in a meaningful way. Armed with 19 years of perfect health, I left for the University of Notre Dame feeling like the world was at my feet, believing I could do anything or be anyone, not understanding good health is the invisible, yet shockingly fragile axis most of life spins on.
My first semester was exceedingly normal: dining hall lunches, spike ball games, late-night library study sessions, slimy clubs that turned a blind eye to freshmen IDs, and long exams before Christmas break. However, in January, at the start of second semester, I began experiencing digestive problems. Stomach pain after dinner. Stopping mid-run to use the toilet. Stumbling to the bathroom at night. The symptoms were at first few and far between, dissolving against the classes, studying, clubs, workouts, dorm activities, and social life that dominated my day-to-day. Brushing off the erratic incidents was easy, but the otherwise forgettable symptoms multiplied exponentially, demanding attention I was reluctant to give.
Few and far between became each and every day, then multiple times a day. Whenever I ate, my stomach cramped with sharp, shooting pains. Using the bathroom after a meal became as much a habit as washing my hands before. Worried, I went to the University health center, anxiously confiding I was having painful, urgent diarrhea seven to ten times a day, but I was prescribed Imodium and told the changes were stress-related. Weeks passed, and my health continued to decline, until I was passing blood and mucus with each bowel movement, going to the bathroom 20x a day, running a 102 degree fever, suffering night sweats, and had lost 15 pounds. Given the bureaucracy of the healthcare system, I couldn’t see a gastroenterologist until April, and I spent the semester in the restroom rather than the classroom, consumed in pain, exhaustion, and fear, the reality of my freshman year a nightmare compared to what I’d imagined.
Before seeing a GI, I was rushed to the ER due to swelling, redness, and painful pulsating in my right leg. Seven long hours and a multitude of tests later, I was diagnosed with a DVT. I didn’t understand why I’d clotted, as I met none of the typical risk factors and it seemed completely unrelated to my stomach issues, but neither did the ER doctor. He sent me back to campus, prescribing abdominal blood thinner shots, advising a University health center nurse would administer them. I had no idea what was going on, or when my health had spiraled so far out of control.
Feeling terrified, confused, and completely alone, I trudged to the health center each morning, a syringe in hand, to lie on an exam table and get stabbed in the abdomen, before heading to class alongside peers who’d spent the time prior to lecture grabbing a Starbucks coffee. Disconnected and isolated from my classmates and their worries about homework and parties, I began silently screaming, ‘Why me?’ I felt singled out, chosen in the worst kind of way: I didn’t want to be the only freshman with syringes in her dorm room, bruises on her abdomen, a colonoscopy on the horizon. I didn’t have the words ulcerative colitis or inflammatory bowel disease to describe what I was going through. Until my diagnosis, I’d never heard of IBD, ulcerative colitis, or Crohn’s disease. I didn’t have family members or friends with the condition, and I barely knew what chronic illness even was.
When I finally reached my first colonoscopy, I was too tired, sick, and desperate for answers to feel embarrassed. The ulcerative colitis diagnosis came the same day, and for the first time in months, I had an explanation. Despite hearing, ‘We diagnosed mild ulcerative pancolitis today. All five feet of your colon are completely inflamed,’ I felt only relieved. Instead of being overwhelmed by a life-long, debilitating condition, I latched onto what I’d been waiting for all semester: the GI knew what was wrong, he could help heal me, and I could still live a normal life. Yes, I had chronic illness, yes I’d need medication every day for the rest of my life, yes I was only 19, but the diagnosis felt less scary than the way I’d been living. My IBD diagnosis, in a convoluted way, was a source of joy and hope, freeing me from the shackles of uncertainty, providing the long sought-after answers I’d craved.
Instead of an immediate return to normality, I suffered months of prednisone, prednisone side effects, and Lovenox shots. My blood clot was eventually named an extraintestinal manifestation of my IBD, something that likely could’ve been avoided had I received IBD treatment earlier. It was then discovered my platelet count had been decreasing, clocking in at 30,000 when normal ranged between 150,000-450,000, putting me at severe risk for uncontrollable bleeding and resulting in more terror, confusion, consults, and a doctor telling me I might have cancer, before a second autoimmune condition diagnosis, immune thrombocytopenic purpura, was settled. ITP is chronic low platelet counts, and I learned one autoimmune disease often triggers another, as if one life-long illness wasn’t enough. Before I understood what ulcerative colitis even was, I knew from experience, from the blood clot and ITP, that it was so much more than just a gut disease.
Over the course of the 2017 summer my IBD improved, and I began my sophomore year strong and healthy once again. My UC in deep remission, I enjoyed two years as a ‘normal’ twenty-year-old. I took my medicine and went to annual appointments, but for two years, my IBD never hindered me, and rarely crossed my mind. I started believing my UC was mild, that I’d remain in remission as long as I took my medicine, that the nightmare was truly one, massive, single-instance mishap. My healing lulled me into a false sense of security. Given all I’d been through, I thought, even if I flared, there was no way worse could ever lay ahead.
However, in summer 2019, right before my senior year of college, my IBD returned with a vengeance. The medicine I’d religiously taken for two years, without warning, was no longer effective. I was sicker than I’d ever been, weighing 115 pounds, unable to sleep or eat, living in constant, excruciating pain. I began Entyvio, a biologic medication, the same week classes commenced, but saw only minor improvements during the fall. I struggled to make the 15-minute walk to campus, arriving shivering, feverish, nauseous, and dizzy.
When I wasn’t in seminar, I was lying in bed and sprinting to the toilet, left alone in the apartment most nights while my friends were at the bars, at house parties, at football games, or gone on weekend trips, trying to ‘make the most of senior year!’ I didn’t understand why I was being denied a senior year, why I didn’t get to participate in the senior traditions. I didn’t understand why my health was denying me the privileges everyone around me seemingly took for granted. Living in an environment where everyone was young and healthy, abusing their health with excessive drinking, drugs, and poor food choices, lacking true appreciation for everything their body enabled, was tremendously difficult. No one could relate to or understand what I was going through, and it often felt like no one tried.
Six months later, I switched to Remicade, going through a variety of enemas and steroid treatments as well, to no avail. I visited natural health doctors, tried diets, hair testing, muscle testing, and unending supplements to ‘cure’ my UC. Missing four days of classes, I was hospitalized in February to receive IV prednisone, but was discharged sicker than I’d arrived. I finally applied for disability accommodations, knowing I couldn’t finish my senior year without them, but the University denied my request. A few weeks later, due to COVID-19, the entire student body was granted accommodations far greater than the ones I’d asked for. In mid-March, in a last ditch effort to save my colon and during the week COVID shut down the world, I was hospitalized for another eight days. The doctors sent me home to finish the school year online, promising ‘cautious optimism’ that we’d save my colon and avoid total colectomy.
Physically and emotionally, March to May 2020 held the worst weeks of my life. Completely bedridden, I dropped to 105 pounds, going to the bathroom 20+ times just at night and showering every five days because I was too weak to hold my body up for the shortest amount of times. I felt like my health was all that I was, I felt like the disease had finally, completely broken me, my life, and the future I’d imagined. How would I ever go to law school when I could barely stand up from bed? I felt defeated. In mid-May, my GI called, confirming my worst fears: ‘There’s nothing left we can do.’ Surgery, and an ostomy bag, was my only option if I wanted to make it past 22.
Less than a week later, and the day after my Notre Dame graduation, which I spent doing nauseating bowel prep while my peers popped champagne and ate cake, I was wheeled into the operating room. I didn’t want an ostomy bag, I didn’t want to have surgery, but I wanted to be healthy. I wanted to go for a walk, eat a meal without pain, sleep through just one night. I wanted to live a single day on my own terms, not squashed beneath the iron fist of UC, a privilege I hadn’t enjoyed for over a year. At the time, I felt like I had no say in the surgery, that an ostomy bag was UC winning and putting its indelible mark on me, but I now realize that’s untrue. Surgery was a choice, and it was a victory, not a defeat. In a yearlong war against something trying to kill me, surgery took my life out of the hands of UC and put it back in my own. Because of this, May 18th will always represent an emotive triumph, a personal rebirth, and the day my life’s trajectory changed.
The recovery from my colectomy was long and arduous. I spent over a week in a the hospital, terrified to look down at the cutting board my abdomen had become. I spent two months on TPN, relearning to eat, reconstructing the 35 lbs I’d lost. I spent months learning how to change, empty, and care for an ostomy. Some days I looked in the mirror and sobbed, hating my now external internal organ, feeling like the world was only cruel and unfair. An ostomy bag wasn’t part of my life’s plan, it wasn’t what I wanted, I was only 22! But other days I looked in the mirror and felt unadulterated awe at how amazing the human body was and all the healing mine had accomplished.
Seven months later, I underwent two additional surgeries to create a jpouch, an internal reservoir fashioned from the small intestine, allowing waste to be disposed of ‘normally.’ Just like the ostomy, there has been an adjustment phase and a new normal. The small intestine wasn’t intended to serve as a rectum and relearning to use the bathroom requires ongoing patience and grace. I’ve noticed, since my jpouch surgeries, conversations about IBD and UC often pass over jpouches. While disability representation needs improvement on all fronts, I’ve seen models with ostomies and products for those with ostomies, but very little geared toward jpouch life. I know going forward, not seeing my situation represented or discussed, knowing very few people understand it, will only add to the loneliness and isolation chronic illness creates.
In spite of the physical trials, the most difficult part of my journey has been the lack of understanding, accommodations, and support from those around me – doctors, friends, the University. I’ve learned people of all ages, but especially those who are young, do not know how to respond to illness. In the past year, I’ve spent over a month in the hospital completely alone, no visitors allowed due to COVID, and very few people texted or checked in. I spent night after night alone in my apartment at school, my friends rarely making an effort to do activities I could participate in. Ulcerative colitis has cost me most of my friendships, and the people I considered friends refused empathy, and were unwilling to do the bare minimum to support me during the toughest time of my life, has been unbelievably hard to come to terms with.
Now six months past my third and final operation, I’ve slowly made peace with all that’s transpired. I know I’ll never have answers for why I have ulcerative colitis, why the treatment options that work for so many didn’t work for me, why I haven’t always received the support I desperately needed. But despite the tears and trauma, I am genuinely grateful for my colectomy. Not only did these experiences save my life, but they have irrevocably deepened, broadened my perspective and mental framework. How I see, engage, respond to, and understand myself and the world is completely changed. Going through this at 22 means most of my life will be guided by the incredible growth and understandings gained. While I would not wish IBD upon anyone, I’d never undo what’s happened. Ulcerative colitis is not all I am, but it will always be a part of me, and that is something I feel only proud of.
This story includes excerpts from a memoir I’ve been working on for the past year on my experiences with IBD, ulcerative colitis, chronic illness, an ostomy bag, and jpouch.”
This story was submitted to Love What Matters by Jasmine B. of the U.S. You can follow her journey on Instagram or email her here to connect: firstname.lastname@example.org. Submit your own story here, and be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.
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