When I was 19 years old, my world was turned upside down. I became very ill and wasn’t sure what was happening to me. The pain in my abdomen was so excruciating I couldn’t stand up straight, and the other symptoms were so embarrassing, I didn’t want to talk to many people about it. I let myself get very sick before I finally went to the doctor and got some answers. Ultimately, I was diagnosed with a chronic autoimmune disease called Ulcerative Colitis.
Ulcerative Colitis (also called “UC”) is an inflammatory bowel disease that causes long-lasting inflammation and ulcers in your digestive tract. This illness affects over one million Americans, most of whom are diagnosed before age 30. Unfortunately, many people with my disease feel isolated because it can be so embarrassing to talk about. Over time, I’ve learned not to feel embarrassed or ashamed. My illness is beyond my control and I’ve spent a lot of time being depressed about it, but I certainly didn’t ask for this and even the doctors can’t explain why it happens to so many people. There is currently no specific cause – only theories – and there is no cure except surgery, which means losing your colon and never getting it back. There are no colon transplants!
The 19-year-old me sat in a doctor’s office with my mother at my side while the man across the desk told me that my body was sick and it was never going to be quite the same again. Disease? Incurable? I had always been healthy and active. From what I understood, he basically said that eating was making me sick. My system couldn’t digest properly anymore, so my body was attacking itself.
I was so frail and weak that I ended up in the emergency room and had to be hospitalized for weeks. I was so ill that I couldn’t walk, dress myself, or even take myself to the bathroom and I wasn’t allowed to eat or drink anything for fear of further exacerbating my disease. I could hardly move, and I was in more pain than I had ever experienced in my life. Constant, relentless pain. That was just the first trip of many to the emergency room.
My doctor told me that I was the worst case of UC he had ever seen. I was sent to multiple doctors, different hospitals and special clinics because no one could quite figure out how to keep me in remission. Eventually, I had to drop out of college and move home with my parents because I couldn’t stop relapsing. In the beginning, I was in denial about my disease and very determined not to let it change my life. I would push myself to get through school and social events, despite crying in pain in the bathroom every 10 minutes. Even though I had straight A’s for the whole year, I received failing grades because I relapsed and ended up in the hospital just before finals. It seemed so unfair, like I had to pay for being sick. My hair started falling out from malnutrition; I had to cut it very short and pin it back on the sides so you couldn’t see the major hair loss on the sides of my head. I remember hair falling out in clumps in my hands in the shower and I would just cry. I didn’t understand why this was happening to me and why I wasn’t getting any better. My body was giving up on me, and I would actually speak to it and beg it not to give up.
For a long time, my life became an endless cycle of medication, remission, relapse; new medication, remission, relapse. Each time I relapsed I was put on complete bowel rest, then slowly graduated to clear liquid and full liquid diets. I had to be careful reintroducing solid food to my body for fear that I might get sick again. There was a time when I literally ate baby food as a woman in my 20s. I developed a strange relationship with food because of all the restriction diets and pain. I associated food with pain, and I also saw it as something I wanted but couldn’t have. Sometimes I would get so angry that I would just eat food I knew would make me sick because I couldn’t take it anymore. I started bingeing in private on foods that I would fantasize about while laying in my hospital bed. My weight was up and down for years, and the steroids they had me on to fight the inflammation in my body made me swell up and I looked almost unrecognizable. Everyone told me it didn’t look that bad, but I knew they were just being nice.
When I asked what would happen if I ever tried to go off medication, the doctors would say, “You could die.” The side effects of the medications were just as terrible. To name a few that I experienced: weight gain, irritability, brain fog, memory loss, insomnia, ear pain, headaches, rashes, constant fatigue and flu-like symptoms, etc. The drugs were powerful and further suppressing my immune system, which made it difficult to hold any job or have a social life. I became known as the girl who was “always sick with something.” I lost a lot of friends and started shutting people out because I just didn’t feel like I could relate to anyone anymore. Everyone my age was off in college and planning their futures, while I was becoming a regular at Albany Medical Center and just trying to find the energy to get out of bed each day.
When I was 23, after a year of medicated remission on a drug that I had to administer at home via a shot in the stomach, I started getting horrible, painful rashes in the sun when I went outside. Then it started happening when I was in the car on the way to work, when the sun was merely reflecting on me through the window. I was becoming allergic to the sun, because of something the medication was doing to my body. Another side effect. I love the outdoors, and I couldn’t stand the thought of something keeping me from enjoying the fresh air and sunshine that I love and live for. I decided I’d had enough.
I sat down with my family and talked about the idea of taking myself off medication completely, and trying to control my symptoms with diet and lifestyle. My disease is triggered by two major things: stress and food. I began studying nutrition and exercise science, fascinated by the complexity of the human body and mind, and what an impact our choices can have on our intricate systems. My parents knew I was determined to find a better quality of life for myself and supported my decision to go off the prescription drugs. Almost two and a half years later, I am beyond happy to report that I am healthier, stronger, happier and more ALIVE than I have ever been. I eat a well balanced and nutritious diet, I exercise every day, keep a positive attitude and avoid stressful environments. Exercise is my new medicine. Research has shown that regular exercise can relieve stress, alleviate depression, strengthen bones and joints, prevent cancer and other illnesses and reduce fatigue! I’ve learned to take care of myself and love my body instead of hating it. I have to make sacrifices and constantly think about how my choices will affect the way I will feel tomorrow, but it’s worth it. I work hard at getting stronger every day because I know what it’s like to have your health taken away from you, and I want to make sure that never happens to me again. The stronger I become, the harder it will be for my disease to fight back again.
When I was really sick, I lost all my muscle and couldn’t even walk up the stairs. People didn’t believe me when I said I wasn’t able to do a single push-up. Today, I am a certified personal trainer and currently preparing for my first all natural body building competition this Fall. I can definitely do more than one push-up! I am truly grateful for each day, each moment, and each breath. I get to exercise for a living now and I have more energy than ever. I have the opportunity to help educate others on how to make their bodies functional and strong again so that they can lead a happier life, pain free and feeling comfortable in their bodies. I know what it’s like to feel like you can never get up again. I know what it’s like to ask yourself if you’re even worth it because you’re so far gone. I’m here to tell you that you are worth it, and you can always pick yourself back up again no matter how hard you’ve fallen down. The human spirit is extremely resilient. All you have to do is remember that you are stronger than you think, and capable of more than you know. Healthy choices lead to more healthy choices. Start now!
Avery Lansing is a personal trainer at VENT Fitness in Guilderland.