My Story- Who I Am and Why I Raise Awareness

I woke in a frenzy, hurriedly flinging off my sheets and tugging down my panties as I ran out of my room and around the corner, and promptly threw my naked butt down on the toilet seat. As quickly as I had moved, I still managed to dribble crap from my bed to the bathroom. I was home alone, but humiliated and confused with myself. My family doctor told me I was vitamin D deficient and probably had hemorrhoids, but every time I tried to Google my symptoms, I only pulled up colon cancer. I spent the next hour scrubbing the strangely maroon-colored soil out of the carpet, wiping the blood spatters from the toilet seat, and being extremely cautious I left no trace of my accident behind. To my dismay, the hoodie that I bought my long distance boyfriend for his birthday was especially splattered. Having no more money to buy him a new gift, I washed the hoodie three times in antibacterial soap and hot water.

I have ulcerative colitis. By the time I was diagnosed, nearly a year after that particular accident, my entire colon was severely damaged and on the verge of perforation. I was told I could die. I was severely anemic, malnourished and dehydrated. My bones and joints ached, my guts were screaming at me, and I was using the restroom over forty times a day. Even when I didn’t feel urgency, my ass dripped blood, and I wore hospital undies (gross!) so I wouldn’t stain my own. The only thing between me and an ostomy was a dose of super mouse proteins, otherwise known as Remicade, to hopefully slow down my overactive immune system. I was disgusted at the thought of an ostomy. I cried, thinking I’d look hideous. I cried. And cried. And cried. I wasn’t just crying because of the upcoming ostomy, or my bleeding bowels, or that I stank so bad the nurses would, politely as they could, spray air freshener all around my room every single time they came in my door. I was crying because I really, really freaking hurt, the steroids were messing with my head, I knew I could die, and I was really, really embarrassed. I only let my immediate family, two aunts, my grandparents and my partner know what exactly, I was in the hospital for. I made sure they would only tell everyone else that I was having some issues and would be out of the hospital soon.

I was so embarrassed that, prior to hospitalization, I barely told my family doctor how bad my symptoms were. I only said that I had a lot of blood in my stool, was extremely tired, ached everywhere and I had to use the restroom a lot. I didn’t say that when I was going to the bathroom, I was literally only crapping blood most of the time. I never mentioned that my urgency was so severe, that I lost count of the number of times I soiled myself in public. I never mentioned that I could eat nothing, because I’d either throw it up, or it’d go straight through me.

She failed to prompt me about my bleeding butt. She failed to wonder why I lost thirty pounds from my 5’1″, 135 pound frame in one month. She failed to recognize my elevated white blood cell count as a sign of a bigger issue. Instead, she summed my symptoms up to panic attacks, a vitamin D deficiency, and an unexplained  elevated white blood cell count. With that, she sent me to the psych ward for severe panic attacks. Once I got there, the psych ward nurses recognized that my needing to be carried to the restroom every fifteen minutes because I couldn’t walk by myself was not a psychiatric issue, and I was transferred to a medical unit. Over the next few days, I was given a CT scan and colonoscopy, before finally being diagnosed with severe ulcerative pancolitis.

After I got out of the hospital, having escaped surgery by hours after the Remicade worked just well enough to spare my colon for the time being, I still kept quiet about my disease. With time, I started to open up. I made more poop jokes to cope with the overwhelming depression. I started telling people I trusted about my disease. Some people gave me amazing support, would ask me to tell them my story, would pray for me, laugh at my poop jokes and kindly ask me if I was in pain when I’d tenderly rub my swollen, bloated belly. Some people told me they cared about me, but then dropped out of my life. And then there were others… The others were cruel. They told me horrible things. I was told I’d never have children, that I needed to shut up because they go seven times a day due to terrible IBS, or that I should just wear Depends. These things hurt me deeply. I’d go home and cry, feeling miserable for myself.

I learned who to open up to when I was feeling down and that I shouldn’t have to endure the humiliation some people put me through. I lost friends because of this disease. But I also forged amazing bonds with my family, my parents, my sister, and my devoted, loving partner. Although I’ve had gut problems my entire life and it’s only been fifteen months since my diagnosis, I have only begun opening up about my condition a few months ago.

During IBD Awareness Week 2012, I posted a status on Facebook every day about my story, and what makes IBD such a serious condition. Although terrified, I set my privacy to “friends” so that all who I was friends with could read my posts…I was met with incredible support.

Relatives who had no idea I was suffering sent me their love. Old friends from high school contacted me. So many people let me know I was in their prayers. I’d sit at the bus stop after work, reading the amazing comments on my statuses struggling not to break down and weep with gladness.

I never thought I would raise that much awareness in a single week, or feel such incredible love from old friends and extended family. It was my first time “going public” with my disease, and it was an amazing, liberating experience.

Awareness for ulcerative colitis and Crohn’s disease could have saved my health. This is such a humiliating disease and no one wants to talk about bathroom issues. Lack of awareness literally almost killed me. If my doctor, however incompetent, hadn’t sent me to the psych ward, would I be alive? Probably not. But because she failed to do anything up to that point, I now struggle with keeping my health under control and remaining in remission. We need to spread awareness so that no one ever feels too ashamed to admit their illness no matter how embarrassing the symptoms or what the disease. I need to be open about my disease so that others can feel comfortable talking to their doctors and other patients. Doctors need to be better educated about when to refer patients to a specialist and how to ask their patients fact-finding questions. Most importantly, they need to make time for their patients. This is not such an uncommon disease. In America, one out of every two hundred people have IBD. Everyone knows someone with IBD, they just may not realize they do.

I do not want sympathy for my condition. I don’t want anyone to play “emotional babysitter”. I just want them to validate my pain, recognize this is a serious illness, and not feel ashamed to speak up about their own bleeding bowels. My body is something I will never again be ashamed of, no matter how diseased and damaged it becomes. I hope I can lead others to feel the same.

Note: this was published as a guest blog on The Great Bowel Movement.