“You have Crohn’s disease.” Those were the words my doctor said to my parents and me when I was only ten years old. Just four small words were all it took for me to come to the realization that my life would no longer be the same. It’s been 14 years now since my initial diagnosis, and I’m finally beginning to see just how much of an impact those four small words have made on my life today. I vividly remember the endless laundry list of medications, and the long, sleepless nights I had to endure. I remember believing this was all just a dream that would eventually dissipate and melt away into the morning light. But, unfortunately, that tomorrow never came.
My story begins in December 2002, right around Christmas Day. Long forgotten were the days of swimming and sunshine, and the cold, crisp winter chill had fervently taken hold. The evening began as it normally did, with all of us together at home. My mom, dad and I were getting ready for a Christmas program that was being held at our church that night. In between deciding on the perfect outfits to wear and singing Christmas carols, my mom was the first to notice the change in my appearance, and how much weight I’d lost practically overnight. I, of course, initially shrugged it off, chalking up her concerns to “just being a worried mom”. After all, I’d always been naturally thin, but lean, since I grew up playing soccer and other sports. However, it soon became very apparent to me just how pale and skeletal I’d become. I feverishly began to worry about my weight and my appearance, asking my mom over and over again for reassurance. A constant array of questions ran through my mind. What on God’s green earth was happening to me? Why was this happening? Should I be doing something? Do I need to see a doctor? This was the very moment I knew in my heart something wasn’t right. It would be only a few weeks later when I’d finally discover why my own body was supposedly turning against me.
It was during those few weeks that I’d been in excruciating pain. Oftentimes, it felt as if someone was constantly plunging a knife into my abdomen. The pain was so bad, it would literally bring me to my knees, and I’d collapse wherever I was in agony. The rapid weight loss continued. I struggled to keep food down, no matter what I ate. And I had absolutely no energy. The couch in front of the TV had become my new favorite hangout spot. When I finally did make it in to see the doctor, he gave me an official diagnosis: Crohn’s disease. He ran some blood tests to be sure, only to confirm my and my parents’ worst fears a moment later. At that point, I’d inadvertently become the newest member of a club to which no ten year old should ever belong.
Now, you may be asking yourself, “What is this ‘Crohn’s disease’ of which she speaks?” Crohn’s disease – along with its very similar partner in crime, ulcerative colitis – falls within a group of related illnesses known as inflammatory bowel diseases, or IBDs. While ulcerative colitis is limited to the large intestine, Crohn’s disease can and does affect any part of the gastrointestinal tract, from the mouth all the way on through to the anus. General symptoms of both types of IBD range from abdominal pain, vomiting, weight loss and fatigue, to diarrhea, malnutrition and blood in the stool. As is apparent in my own account and experiences dealing with this illness, it can have an enormously negative impact on one’s well-being and overall quality of life.
My more formative years during middle school and high school consisted of excelling on the soccer field and the volleyball court; establishing new friendships; keeping my grades up; attending football games and sleepovers; and riding scooters around Walmart at two o’clock in the morning because, well, why the hell not? I was simply trying to live my life as a typical teenager. With Crohn’s disease came the added challenge of managing a medication schedule and attempting to limit my diet to only the foods I knew I could tolerate well. I also had to endure countless routine medical procedures and trips to the doctor’s office. As one of the regulars at Children’s Medical Center in Dallas, Texas, I was that little, blonde girl with the big, red binder, which contained all of my growth charts and miscellaneous medical paperwork. But, considering the fact that I was faced with such challenges, I had managed my illness quite well.
When you’re diagnosed with an inflammatory bowel disease, whether it’s Crohn’s disease or ulcerative colitis, medications are often the first line of defense, especially in the younger patients. In the throes of the wild and unpredictable symptoms of the disease, by this time, I’d started seeing a gastroenterologist, who’d put me on a regular daily dose of mesalamine, more commonly known throughout the IBD community as Pentasa. Pentasa is described as “a controlled-release formulation of mesalamine, an aminosalicylate anti-inflammatory agent for gastrointestinal use” (Pentasa US). In layman’s terms, this medication is intended to work directly within the gastrointestinal tract to calm the inflammation. For me, Pentasa, in addition to the other various medications that followed, had its moment of glory, but then completely stopped working altogether. Medication after medication would drop off the radar, as my body quickly built up resistance to each new treatment I tried. Imuran. Prednisone. Flagyl. Methotrexate. And finally, the mother of all Crohn’s medications (well, one of them anyway) – Humira. Humira is a form of treatment, usually taken through a subcutaneous injection, that blocks the body’s systemic inflammatory response, known as tumor necrosis factor, or TNF. This invariably renders the immune system inactive, allowing a person to become more susceptible to serious infections and other autoimmune conditions. I was on Humira for two years, and I admit, it did work for awhile, but of course, this moment in the sun was short-lived. As my body began to, yet again, develop antibodies and immunity to the medication, the inflammation became this insidious presence that wouldn’t necessarily get worse, but it would never completely heal on its own either. Nonetheless, other than the occasional bout of nausea and fatigue that would follow on the day of the injection, this treatment regimen had somehow kept me in remission all the way up until March 2014. After that, I never took any medication ever again.
It was during this time that I experienced one of the worst flare-ups of my life. Admittedly, I wasn’t particularly fond of having to do the Humira injections every two weeks, and I’d finally reached the point where I just couldn’t do them anymore without backing out at the last minute, allowing the medication to instead trickle quietly and sadly down the side of my leg. If only Humira had the ability to absorb straight into the skin with the same level of efficacy… What were supposed to be biweekly injections became few and far between and, eventually, ceased altogether. I also wasn’t tolerating anything I was eating, and at one point, I was down to just five or six “safe foods”, the ones I knew wouldn’t cause me pain and discomfort later on. As a result of such a limited diet, over the course of about three or four months – perhaps, even less than that – I’d lost a total of 25 pounds.
I couldn’t continue on like this. I had to do something. I had no other choice. The medication wasn’t working for me anymore, and I wasn’t getting enough nutrition. This was not a sustainable way of living. So … I just … stopped. I stopped the Humira, cold turkey, of my own accord and without any approval from my doctor. I stopped eating the Standard American Diet. I stopped it all. In hindsight, that probably wasn’t the wisest decision, but when you’re in a health crisis of any kind, you’re willing to do just about anything to heal yourself, to be well again. In any case, my doctor couldn’t have cared any less about my health and wellbeing, even if he tried, so I had to take matters into my own hands. I had to figure out the best way for me to heal myself from the inside, out, and to build a newer, much stronger foundation of health and wellness. I decided to fight this disease in a way I’d never done before. I completely abandoned all forms of conventional treatment. I left them all behind, never looking back, never faltering in my decision. After much internal debate, I finally surrendered to my own body, ultimately allowing food to be my medicine. In all honesty, in the last 14 years, this has been the single best decision I’ve ever made with regards to my health.
Life with a chronic illness is anything but typical. It can challenge you physically, as well as mentally, emotionally and spiritually in ways you never thought were possible. It can relentlessly turn your whole world upside down and leave you drowning in a sea of questions, fears and doubts about who you are and everything you believe in. Yet, despite everything I’ve endured up to this point in time – one of the most extraordinary moments of my life – I’m here, I’m alive, and I’m well. Today, I’m incredibly happy to say that I’m completely med-free and in remission. And, despite having a bowel resection to remove 15 centimeters of severely diseased intestine, I’m managing very well with the changes I’ve made to my diet and lifestyle. Subsequently, it’s these changes and improvements I’ve made that have allowed me to continue attending college. I’m currently a student majoring in Health Promotion at the University of North Texas, finishing up my (last) senior year. After graduation, I want to be a staff writer for a health and wellness magazine. I’d also love to open my own vegan restaurant and bakery someday, so that people who follow a very strict diet, yet want that same sense of freedom that everyone else has to go out to eat and socialize with family and friends, may do so without the fear of being judged or feeling deprived.
To tell you the truth, there was a time when these dreams of mine felt intangible and unreachable. Impossible, even. It felt as if my life wasn’t really going anywhere, and that I was never going to get where I wanted to be in terms of health, school or work. But I can’t help but believe that all of this happened for a very special reason, that it wasn’t just all for nothing. I know now that I had to overcome obstacles concerning my own health before I’d ever be able to help anyone else overcome theirs.
It’s been many years since my initial diagnosis, and even now, I still find myself wondering just how different my life would’ve been had I never been diagnosed with Crohn’s disease. I often wish I’d had a more “normal” upbringing, never once having even the slightest concern about the food I was eating or the location of the nearest restroom. But if ever I was given the chance to choose a different life, would I take that chance? Would I want things to have turned out differently? Although it may sound utterly insane and unconventional to some … no. I wouldn’t change a single thing that happened to me. If I’d never been dealt this hand, I would’ve never learned to appreciate the small, yet beautiful, things that simple, everyday living has to offer. I’d never been able to fully experience and appreciate life in the way that I do now. Then again, that’s often how it is, isn’t it? Sometimes, the hopes, the dreams and the plans we have set aside for ourselves aren’t what we were meant to be pursuing after all. We inevitably stumble and fall flat on our face, only to rise up once more as someone much stronger and wiser than the person we were before. It’s only through the illness, the strife, the struggle itself that we finally begin our journey to healing. Life with a chronic, incurable illness may not always be easy … but it sure is worth it.
The Lord will fight for you; you need only to be still (Exodus 14:14)