My IBD Survivor Story: How I Coped as a Twenty-Something Woman

Even those of most us who were miserable in high school agree that senior year was the most memorable -- the best 18 weeks we ever had attending that place. Being the only senior on the varsity cheerleading squad, a band officer, and still managing to maintain some old friendships with the hoodlums who frequented detention hall, it was a time I look fondly back on. My senior year of high school also stands out as the time I thought my whole world fell apart. That was the year the doctor told me I had IBD.

IBD, or inflammatory bowel disease, describes two sister illnesses: Crohn's Disease and Ulcerative colitis. Almost ten years ago, I received the official diagnosis of Crohn's Disease in the area where the small bowel meets the colon. That little patch of red, cobblestone freckled intestine swelled enough to deprive me of enough nutrients to spiral my weight from a healthy 115 pounds down to a frail 96 pounds before anyone realized I ailed from a disease.

I spent a few weeks crying over my diagnosis. I didn't understand what it was; I never heard of such a disease before, and I thought the worst. Attempting to get through senior year as if nothing had happened was a feet in its own. Teachers pulled me aside in the hallways with concern that I had become an anorexic. Looks and whispers from some of my classmates didn't help matters, either. Crohn's patients burn off calories faster than the average person, and we do not absorb nutrients through the intestines properly, so I must eat 6 to 8 small meals a day or I face becoming unbearably hungry and tired. I often sat out during cheerleading and band practices because of becoming too tired to keep up with the rest of the group, and often I would feel pressure pains from eating dinner prior to meeting with the rest of the team. Pressure pain, the sensation of food pressing into the sides of the intestinal walls, is excruciating and often paralyzing. I also had to work extra hard at my Saturday morning gymnastics lessons in order to get my tumbling back into shape. Losing all of that weight caused me to lose a great deal of muscle, and I could no longer do back handsprings or back tucks for cheerleading, and the instructor had asked my mother if it was even safe for me to practice them. "The doctor says exercise is good for her. Besides, she's going to do what she wants to do, and this is what she wants - she won't chose between her activities," my mother would say. She was right.

Respect and sympathy gained from a few months at high school for coping with IBD quickly faded once I entered college. Healthier women overshadowed my talent as a cheerleader, and I didn't make the squad. Many girls on my floor in the dorm didn't understand my eclectic style, so I made friends elsewhere. I joined band, but it broke my heart that I was never asked to take on a leadership position during all four years I attended the group. I had a reputation in high school of being a meritorious student leader, and this group wouldn't even give me a chance to live up to it. My band mates often believed that I made more out of my disease than what it was, even through operations I'd undergone for serious fistula abscess infections and obvious weight gains and losses. I didn't always make it to practice, and I still believe my band director felt the same way the students did - either that, or he was just sick of hearing about yet another Crohn's related problem. Maybe he didn't know that Crohn's affects the entire body, not just the digestive tract. Either way, I never thought he liked me, which hurt. My high school band director had adored me. I'd taken on schedules that I couldn't handle, piling on more and more classes to make up for classes that I'd failed from being too sick to keep up with the work. In 2000, my grade report donned all A's B's and one F - I had one professor who insisted she'd never gotten the memo from the campus health center that I spent a week in the hospital for an infection. By my second junior year, I couldn't handle college anymore. Physically and emotionally drained, I began to make unrealistic choices and lost focus. I started to make excuses for my actions because, after all, everyone thought all I did was make lame excuses anyway. It became hard to tell when I told stories to cover my tracks, when I actually believed what I said, and what was true. I moved back into the dorms and lived on a floor with women who were much younger than me and had different interests and tastes than I did, so I didn't have any friends surrounding me. None of the women who lived on my floor knew I had IBD, and they often smelled foul orders coming from my room and the restroom. It quickly spread throughout the entire building that I was disgusting and there were rumors that I might also come from an underprivileged household. I faced comments and whispers daily, but I told myself that those girls weren't worth wasting my time explaining myself to - there were much more demanding aspects of my life I had to worry about. In spring of 2003, I was diagnosed with bipolar disorder with paranoid psychosis and took a sabbatical from school due to academic suspension.

That summer, I moved in with the man who later became my husband, and I allowed myself to get sick without a fight for the last time. I ate what I felt like, and I didn't have health insurance, so I stopped going to the doctor or taking my medicine, and I dropped down to 84 pounds within the year. My family lives on the other side of the state, so they were mostly unaware that my health declined to the point that I comfortably wore little girls' size 8 shorts that summer. His family noticed, though. His mother said to me, "Kami, you are going to the hospital, whether you go on your own free will or if I have to pick you up and carry you there." I protested at first. After all, I didn't have insurance, and no one would employ a young woman who lived in a high drug trafficking neighborhood who looked like I did, no matter how many jobs I applied for - an unkempt mess with Olive Oyl's figure, I looked like I fit into the downtown scene, so I couldn't get a job. Reluctant and scared, I got on the bus the next morning and went to the ER.

It was determined that my hemoglobin and blood sugar levels were 8 and 4 respectively, and an IV pumped blood, potassium, and other nutrients into my veins. A sign with the acronym NPO hung over my bed for four days as the doctors performed numerous tests on me. The upper GI x-ray explained it all. Crohn's Disease took over my entire ileum (small intestine), and Ulcerative colitis developed on my colon. My digestive tract barely functioned. Several bags of fluid later, solid food appeared on my hospital trays, alerting me that my stay was nearly over. I gained back ten pounds and had newly filed paperwork ready to cover my prescriptions when I got home. Death frightened me enough realize that my health is nothing to fool around with, and I vowed to get my life back on track from then on.

I applied for supplemental security income, food stamps, and health benefits to ensure a roof over my head, enough food on the table to keep me alive, and plenty of medicine. Growing up, values taught to me fought against using government resources to get by, but I knew that I needed a head start somewhere. My husband and I discussed the possibility of getting married, and we moved into a better part of town in a much more accommodating home. My two years of academic suspension ended, and I finished another semester of college that summer with a 3.5 GPA. Taking the steps to getting my life back meant doing simple tasks like remembering to take my medicine and carrying extra toilet paper with me and my CCFA card to show my professors when I needed an emergency bathroom visit. It also meant making myself active and motivated even when I felt like I couldn't even get out of bed. I wanted another shot at life, but IBD is unrelenting at attempting to destroy life. IBD doesn't care. It destroys all parts of a victim's life, good or bad, and without mercy.

That winter, my joints began to swell, and my pain specialist diagnosed me with fibromyalgia, carpal tunnel, and tendonitis. Still, I was sitting on straight A's and a semester away from graduating, and I wouldn't let anything ruin what I had accomplished. By mid-March, my back and ribs contained the sensation of rocks stuffed under my flesh instead of bones, muscles, and organs. Sitting, standing, or lying in any position offered no comfort, but I couldn't bring myself to sacrifice my new life for my past world of doctors, IV needles, barium, blood, and x-rays. So I ignored it. I stuffed a pillow under my aching side every night and stuffed a coat between my desk chair and back during the day until I could ignore it no longer. The end result was three weeks in the hospital recovering from two colectomy surgeries, and five fistulas with a partial abscess, fluid surrounding my liver, slush in my gall bladder, and an ileostomy surgery. Ulcerative colitis ripped a perforation into my colon, and my small intestine folded over top of the hole to keep me alive. The surgeon who did the biopsy of the 2/3 of my colon that was removed said I was a "very lucky girl," and he emphasized that I have no idea how bad the ulcers are on my colon. Spending that much time in the hospital with several fluids pumped into me each day through a needle in my neck caused my lower body to swell and my stomach cavity to collapse. Once the fluids escaped my body, I no longer had the muscle capacity to walk long distances, so I spent six months in physical therapy and nine months in a wheelchair.

I made up those spring classes via arrangements with the professors and finished the semester of my surgery with a 4.0, and made the Dean's List my following and graduating semester, December 2006. I married my husband this past September and freelance music articles from home. Recently, I landed a job working as an order entry clerk from my home as well. Ulcerative colitis and Crohn's Disease have gone hand in hand in helping me appreciate life. I've learned not to waste my time worrying about insensitive people or looking to others for happiness. I create my own happiness now, and I'm blessed to share my life with someone who appreciates who I am regardless of what my body does to me. I am 27 years old, and I can no longer deny that there is a reason why I've had all of these chances to finish my life early but continue to survive; I won't receive these free chances for long. Fortunately, I refuse to rely on fate for survival. I create my own happiness, and I maintain my own survival just the same.