Hi, my name is Lily Colman and I was born and raised in Philadelphia, PA. I don’t have Lyme Disease but I do have Crohn’s Disease; a chronic autoimmune illness that is one of two forms of Inflammatory Bowel Disease (IBD) that attacks the intestines, usually the small intestine. Ulcerative Colitis, the other form of IBD, generally only attacks the colon.
Crohn’s was always a part of my life, even before I was diagnosed. My grandfather was diagnosed in his 50s, after being so sick one night that he couldn’t keep anything down. He was rushed to the hospital where a large portion of his small intestine was removed and he was diagnosed with “Ileitis” (because of its location in the ileum of the lower intestine). It wasn’t even called Crohn’s Disease yet. He lived at the beach so I always saw his foot long abdominal scar, but I never really understood what it was from for several years.
When I was nine, my older sister Alex was extremely sick. She was 12 but only weighed about 70 pounds, was constantly in the bathroom and missing school either to stay home or get blood work. She was never hungry and always tired. A well-meaning teacher approached my mother, believing Alex was anorexic. My mother was furious at the implication that she was unaware of her own daughters’ health problems.
My parents were very familiar with the symptoms because of my grandfather, so it came as no surprise when Alex was diagnosed with Crohn’s. But it didn’t make it any easier. She was promptly put on a feeding tube, an experience my family will never forget. A nurse came the first night to show her how to insert the tube (up the nose and down the throat). I crept into the den to observe, since I was curious. The nurse sprayed Alex’s throat with a “cherry flavored” numbing spray and began inserting the tube. Alex began to cry. I tried to be strong and stay for her, but I couldn’t do it. I ran into my room and closed the door, playing my radio loudly to drown out the sounds.
About a year later, my mother was concerned about my growth. I was almost 10, but was dwarfed by everyone my age and extremely skinny. I was taken to my pediatrician since my mother was concerned I had a growth hormone deficiency. It turned out I was 50 pounds and hadn’t grown at all in three years. As the nurse went to take my blood, I tensed up and nothing came out. I screamed bloody murder. The nurse stuck me again. I have never looked at a needle the same since then.
The initial blood work indicated the possibility of Crohn’s Disease. My parents were in shock. They were not aware that growth failure was a symptom (which it only is in children; since you don’t absorb nutrients properly, your growth is stunted). I went through a series of unpleasant tests to diagnose me. First was an x-ray done of my bones, which confirmed that at age 10 my bone age was that of an 8 year-old. Second was the barium test. I had to fast for a day and then drink a disgusting chalky substance called barium, while the doctors use an x-ray to watch how it moved through my system. Then were the colonoscopy and endoscopy tests. Thankfully I was put under for this procedure, but the worst part was the 3-day liquid diet before hand. Eating nothing but popsicles sounds great at first, but after a day I just wanted to chew on something solid.
I was given a liquid sleep medication before the IV, so I don’t even remember my doctor coming in to start the procedure. The next thing I remembered was waking up in a hospital bed, looking over at my mother sitting next to me and saying, “Did they do it yet?”
The day of my diagnosis was one I’ll never forget. I came home to find my dad sitting with my mom at the dining room table, when dad was still supposed to be at work. My parents sat me down and gave me the news. Even though I’d been through all the tests and knew essentially what it meant to have Crohn’s, I couldn’t wrap my mind around the idea of actually having something for life. I was 10, terrified and confused; a little girl who had no idea what was happening to her own body. I screamed at my mother that I hated her. She ran up to her room crying and I realized that I was not the only one affected by this diagnosis. As I crawled into bed and apologized to my mother, telling her it wasn’t her fault, I felt I’d aged a thousand years since the morning.
About a year later, my younger sister Drew was diagnosed as well. My doctor, who did a gene study of our family, discovered that not only did my mother carry the gene, but my father did as well, making clear to all of us why we three children were so susceptible. During my first year of college, my mother was diagnosed. Although it’s been hard that almost my whole family is affected, we’ve realized how much worse it could be. None of us have yet to have surgery to remove part of the intestines, nor have we had to go on the more extreme medications (Prednisone, a severe steroid; Humira, a bi-weekly injection; or Remicade a monthly infusion). I’ve been lucky enough to grow a bit, gain some weight, and keep my illness fairly regulated with oral medication, giving me at least the appearance of a normal girl my age.
I have always been very open about my disease. Not only is it a part of who I am, but it is a part of who my family is as well. Being open about it has allowed me to understand and process what is happening to me on a daily basis. A lot of people are uncomfortable with it though; no one likes discussing anything having to do with bathrooms or the gastrointestinal tract. That was part of the reason why I decided to do a portrait and interview series of people living with IBD: to bring it into the light and make it an open and acceptable part of discussion. The other reason I wanted to make it a topic of conversation is the idea that I don’t look sick. There’s this idea in our culture that illness does not exist unless you can see it, and as we have all proven that is far from the truth. You can see some of the stories on my website, lilycolman.com, under the project “Do I Look Sick To You?”
I met Allie through our mutual friend Erica, whose story about living with lupus was just published on this website. They asked me to do Allie’s headshots for the project. Being able to work with other young women who understand my daily struggles is not only empowering but inspiring, and although I would never have wished this illness upon myself, I can honestly say I would not be the person I am today without it. Thank you, Erica and Allie for giving me a space to discuss my illness with other people who understand and appreciate my struggle.