Living & Loving with Crohn's Disease

By Laura Mayron '16

Content warning: this article contains descriptions of digestive illness, chronic pain, injections, weight loss, and body image problems.

Last October I sat on the doctor’s examination table in Newton-Wellesley Hospital, swinging my legs against the paper covering to help distract me from my nerves, as my doctor told me what I had been fearing: I most likely had Crohn’s disease. 

It all started on Flower Sunday, 2014—I had strange stomach problems worse than the usual upsets that I had previously attributed to lactose intolerance. But this time, they wouldn’t stop. Within a couple of days, I called my parents, both doctors, to complain of the constant rushing to the bathroom. Having recently returned from Chile, I was encouraged to go to Health Services to get checked out, as my parents suspected it was a parasite. I tried to hope that my tests there would reveal an answer, but Health Services had already warned me that I’d have to go to a specialist if the results were inconclusive. One by one, the test results came back—all negative. Antibiotics and changing my diet did nothing to help, and it was starting to get worrying. At first, my problems had only been annoying, a minor inconvenience that I could brush off and laugh about as some minor mystery illness, but as the results all returned showing nothing, I couldn’t ignore the voice in the back of my mind that this wasn’t going to be solved so easily. Furthermore, I was embarrassed—despite the fact that we all poop, and have all had stomach problems at some point, I cringed to say the word “diarrhea,” instead using euphemisms to hide my shame over the gross-factor of an illness that no one wanted to hear about. I couldn’t explain my anxiety of needing to be near a bathroom at all times, instead resorting to copious amounts of anti-diarrheal medication and gritting my teeth trying to get from Founders to the Tower Court area without finding a bathroom. Soon, I was barely leaving campus with my friends over fear of being out in public without access to a bathroom, and had the location of every single open-access bathroom on campus memorized. When people asked what I was going through and what my symptoms were like, I told them that it was like a combination of menstrual cramps, the flu, and—pause, stutter—traveler’s sickness, because of course no one really wants to know what goes on behind closed bathroom doors. It still isn’t always easy to talk about, and is even hard to write about here, but this is the reality of irritable bowel diseases, a widespread invisible illness that isn’t discussed nearly enough.

At this point, however, my embarrassing illness was still a mystery. Before heading in to my doctor’s appointment, my mom had mentioned Crohn’s disease in passing, and of course I turned to the Internet. What I saw there felt akin to jumping off a cliff—there was a bottomless pit of dread in my stomach (that wasn’t just cramps) as every symptom listed matched mine exactly. I tried to brush it off as a coincidence—there was a chance it wasn’t an incurable illness of the colon and intestines that would affect me my whole life, resulting in major stomach problems, chronic pain, sleepless nights, fevers, weight loss, difficulty eating—and yet that was exactly what was happening to me, and denial wasn’t going to change that. So when my doctor confirmed my suspicions after only ten minutes of me describing the last month and a half, I knew I was in for huge changes. I had the distinct sense that my life was about to be divided into a “before” and “after,” and that the “after” would be very different.

I still had to get the official diagnosis, which, to my absolute horror, involved a colonoscopy and drinking a substance my friend and I have nicknamed “Satan’s Perrier.” It was definitely the least fun experience of my life, and something that I vehemently didn’t want to do at the age of twenty-one, but there was no way around it. Joking about it was the only way I could stand the excruciating thirty-six hours of prep, and the only way to avoid the dread of my diagnosis. Coming out of the fuzzy haze of drugs at the hospital, my doctor sat at my side and handed me the photos. As soon as I was lucid, she confirmed what we’d all known: I had Crohn’s disease—more specifically, Crohn’s colitis, since it only affected my colon. The disease is bizarre—part genetic, part environmental, part autoimmune, and they still don’t know what causes it, only that my immune system was viciously attacking my colon as if it were a foreign body, creating ulcers that led to the severe pain, the fevers to try to kill the supposed invader, and a whole host of other symptoms. The good news was that it was a treatable disease, with hope for long periods of remission where I wouldn’t experience“flare-ups.” The bad news of course was that until a cure was developed, I was stuck for life with a chronic illness that, at least in its bad periods, was extremely debilitating. At first I was relieved to have a diagnosis—finally, there was no more mystery. A few days later, wracked by pain that caused me to twist and toss in bed, I cried in my room. I was due to start my medication later in the week, but the days leading up to it took forever as I entered the worst phase of the illness. I could hardly walk across campus, and I would wake up several times in the night, my bed soaked through with fever-induced night sweats, to dash to the bathroom in intense pain, shivering from my damp clothes. I would keep a dry pair of pajamas beside the bed, and just as I was about to fall asleep, would need to get up again. I saw too many sunrises. This, I decided, was hell, and I didn’t know when—or if—it would end. My whole life was turned upside down—what if I couldn’t go abroad to Spain in the spring, what if I could never travel again, what if I had to drop out for the rest of the semester? Thankfully, I had an incredible Wellesley community that helped me keep up hope and support me from near and far, professors on my side, and wonderful friends that offered unending love, understanding, witty bowel-related puns coupled with the smiling poop emoji, and plenty of time keeping me company marathoning Buffy The Vampire Slayer when I couldn’t get out of bed. 

A week and a half after my diagnosis, I did my best to put on a game face as I learned to take my medication; an injection that I had to administer myself into my thigh. A year ago, I never would have believed that I was capable of injecting myself—much less with a big instrument that looked like an epi-pen and burned when administered—but if it was between that or being incredibly sick, I was going to suck it up and do it. There was no option that would make me feel significantly better that was going to be at all easy, so any fear of pushing that button quite simply had to go out the window. If it would restore my health and let me get back to my life as a student and a traveler, I would just have to toughen up, and fast. After receiving my first advance of four injections to get me started, I went home and slept for three hours, shaking and exhausted from the pain as the strange new proteins started their work in my body. The medication was an immunosuppressant, so I had to be extra careful, but my doctor assured me it would help tremendously once it kicked in. I waited, took my steroid pills to help me in the meantime, and then suddenly, after a week and a half, I slept through the night. I woke up to the sunshine, got out of bed, went to the bathroom to go brush my teeth, and the realization hit me so hard that I stopped dead and almost started crying. I wasn’t running to the bathroom that morning, and I had a full night’s sleep for the first time in a month. Excitedly, I wrote in my symptoms log “slept through the night!!!” And then the next night. And the next. I texted my friends in excitement that I had a full night’s sleep three nights in a row, and was met with cheers. By Thanksgiving I had a good deal of energy back, and was eating my favorite meals with gusto. The injections, one every two weeks, started getting easier, though I still had a non-squeamish friend sit with me for moral support and help count me down. Finally my body was learning to stop punishing me for enjoying life, and I started to feel like myself again for the first time in months. 

There was, however, a big series of changes that I had never anticipated. Specialists warned of the emotional impact of being diagnosed with an incurable chronic illness, and having already been diagnosed with depression, I was ready and waiting to fight back against the rising wave of despair that I knew logically was headed my way. I had also been worried that I would have to change my diet like some Crohn’s patients, but since the illness is different in every person I could happily eat whatever I liked, and I could finally go out in public with my friends to enjoy a day in Boston without being paralyzed by anxiety over where the nearest bathroom was. However, the diagnosis was a wild ride, both mentally and physically. I had spent the last few years growing to love my body, becoming familiar with its quirks, inside and out, and I was suddenly thrown for a loop. I dropped eight pounds in as many weeks, lost all my muscle mass, and yet my swollen and painful stomach protruded as if I were pregnant. I felt like my body was alien, not my own. Very few pictures of me exist from that semester, but when I saw one recently, I was stunned. My face was gaunt and pale, withdrawn, my eyes dull. I barely recognized the girl in the picture. The last several years I had been preaching body confidence and acceptance, to love your body no matter what, but I very quickly discovered that loving your body becomes a lot harder when it doesn’t love you back. I had loved my body for its strength, its soft curves, for its bright eyes that lit up when I smiled—but all of that was gone. Instead, the figure I saw in the mirror was gaunt and weak, with a swollen gut protruding from a stick-figuring body with a partially skeletal face. I hated what I saw, and I hated my body for doing this to me. I always tried to take good care of myself—nurture my body with the requisite amount of fruits and veggies (but also my soul with chocolate), stay active and strong, take all my vitamins, and get enough sleep—and the thanks I got was that suddenly it had viciously turned on me. I felt trapped. I wished that I could step out of my sick body for an hour, hand it off to someone else, and live pain-free, just for a little while. I wanted to feel pretty again, to be able to enjoy my time with friends, to go to parties, to be much younger and freer than my illness was allowing me to be. I felt decidedly not beautiful, and that any partner of mine would be disgusted by my body, its problems, and its weird changes related to the disease. I knew logically that none of this was true, but logic becomes tough when you feel unlovable. How would I be able to love, much less live, if this illness kept getting in the way?

With my medication kicking in, however, I was starting to get my life back, though I knew that it was never going to be exactly the same. I was going to class and getting extra help thanks to my amazingly understanding professors, was set to finish the semester on time, and go abroad in the spring with my doctor’s encouragement. I finally started to remember what my life had been like “before,” where I could exist without constant pain, eat three meals a day, and go about my life as usual. I devoured all the foods I had been dreaming vividly about, gleefully eating everything I missed with the passion of a love affair. Thirty-five days into taking my medication, in mid-December, I went to the gym, and almost started cheering out loud on the elliptical when my body didn’t fail me. My recovery pushed ahead, and I finished up the semester startlingly well. The injections, while never my favorite, became a strange ritual of hope—with every dose, I had more chance of recovery. Still, the period of hatred of my body disturbed me, and I couldn’t figure out to reconcile it with my past views of self-love. How was I supposed to love my body when it was attacking itself, attacking me? The discourses of body-positivity were suddenly incredibly difficult to apply when chronically ill, and even harder, I imagined, with disability. Looking to answer my questions, I turned to online communities, where I found people with my same hilariously dark sense of humor about injections and poop jokes, but no satisfying answers about loving your body as a chronically ill individual. The best answer that I can come to is that even if my ill body doesn’t comply with standards of beauty set by both society and myself, it’s beautiful because it keeps fighting, and despite being sick, wants to survive and let me thrive, even if it’s struggling to do so. 

Today, my body is more or less back to how it was before. I’ve been in full remission since early spring and was able to have an amazing time abroad. I’m incredibly lucky and privileged that it’s all worked out so well for me, to the point where I feel strangely guilty calling myself a Crohn’s disease patient or chronically ill, though I know that my current health doesn’t invalidate my past challenges—I do not need to be constantly suffering to be valid in the community. It’s been a year since my flare-up and diagnosis, and while my life has definitely been changed forever, I can mostly forget about the illness aside from my twice-monthly injection days. It’s been strange coming back to Wellesley: I had no idea how much I associated certain places, such as Tower dining hall, with the physical suffering of Crohn’s, and I have to learn how to mentally re-navigate these spaces with the knowledge that I’m okay. Remission itself has presented its own challenges: I’ve had to accept the fact that there is truly no going back to how my life was before. Whether it’s fatigue from my medication, stomach upsets from traveling, or the constant blood tests I have to undergo, remission does not mean a pre-Crohn’s life. Sometimes it’s similar, and I feel the best I’ve felt in four years, but sometimes, when all I can do is sleep, I am heavily reminded of the weight of my chronic illness. I celebrate my health at every chance I get since I won’t be out of the woods until there’s actually a cure. There is always the fear at the back of my mind that I’ll have another flare-up and the knowledge that one day, my body will start producing antibodies to fight back against my immunosuppressant medication, rendering it much less effective. When that day comes, be it in six months or six years, I’ll be ready. In the meantime, I have a new appreciation for life like never before—every adventure I have the energy to go on, every moment spent with friends, every delicious meal, and every good night’s sleep is infinitely more precious. With my new health and zest for life, I’m thrilled to embrace my last year at Wellesley and make up for lost time. I am not defined solely by my illness or its current stage, and I am no less beautiful in remission or during a flare-up—I am defined, I’ve decided, by my strength, by my force in pushing through, in the courage of opening up about my pain to loved ones, by my desire to live and love as fully as I can, in sickness or in health.

From October 2015 Issue