“You have Crohn’s disease,” my doctor said standing at the foot of the hospital bed. The word disease itself was terrifying to me at age 15, yet I was relieved because I had been living with excruciating stomach pain since I was 8-years-old. Finally, there was a reason why I spent half of my life in the bathroom. I went back and forth with so many different doctors over the years, meanwhile my symptoms were becoming worse and worse. The amount of pain and time spent in the bathroom on a day-to-day basis was depressing.
Unfortunately, I was misdiagnosed for many years. My family took me to several specialists and we were told everything from food allergies to irritable bowel syndrome. The most difficult opinion to face was when a doctor implied that what I was experiencing wasn’t physical, but psychological. He actually pulled my mom aside and said he thought I was making up these symptoms for attention. I honestly felt like the medical system had failed me.
I had little knowledge of Crohn's disease since there is no history of the illness in my family, so we were at a loss in terms of what the next steps should be. After all the poking, prodding, scoping, and imaging which led to the diagnosis... I was sent home with prescription for Prednisone. Two weeks after my diagnosis, I was back in the emergency room. I had a perforated colon and needed surgery. I was still trying to wrap my brain around the fact that I had a chronic condition with no cure, and now I was faced with the possibility of waking up with an ileostomy — things felt like they were spinning out of control.
Ostomy surgery was not an ideal choice, but it had to be done in order to save my life. Other than a brief article I read about ostomies on the internet, mixed with all the other Google searches my family read about Crohn’s, I still had no idea what an ostomy was. I had very little time to prepare, but I was fortunate to have a wonderful surgeon who explained what a stoma was, where it would be placed, and what to expect waking up from surgery.
Nothing could have prepared me for what I would endure after ostomy surgery. During the operation my surgeon discovered that my colon had actually perforated and been draining the contents of my bowel into my body. I was lucky that I hadn’t gone septic, but due to the massive amounts of infection and state of the disease, I experienced many complications. I didn’t leave the hospital for eight consecutive months and underwent a total of seven abdominal surgeries, with each of them resulting in an ostomy.
I’m 27 now, and looking back, I’ve come so far since my diagnosis. I knew I never wanted another patient to have to go through what I did, so I became very involved in advocacy and raising awareness in the IBD and ostomy communities. “Speaking up and raising awareness for those silenced by the stigma.” This is my personal statement which sums up my passion in life. I suffered in silence for years because of the overwhelming feeling of isolation caused by my own insecurities of living with an ostomy. Due to my own physical and emotional struggles, I understand why others might be embarrassed of living with Crohn's, or might avoid life-saving surgery because of life with a “poop bag.”
My goal was to speak up, share my story and raise public awareness through volunteer opportunities with the Crohn's & Colitis Foundation of America and the United Ostomy Associations of America. This led to working with a major ostomy manufacturer, traveling throughout the United States speaking to nurses and clinicians on the importance of pre/post-surgical education and the patient’s perspective. Sometimes I joke about being a “professional patient” because I’ve gained so much insight on living with a chronic illness and the resources available to patients. I feel it’s important to share this knowledge so that patients and medical professionals can move forward together to achieve better results.
I became an advocate for myself, but also for others. Living life with a chronic illness and an ostomy is not always easy; I’ve been stopped by TSA, had a pouch leak in a public place, and heard unkind remarks by strangers. Instead of feeling sorry for myself in these situations, it motivated me to make a change. Sharing my struggles with others gave me a voice and changed my perspective on life. By speaking up I’m able to encourage others so maybe they won’t have to struggle in silence like I did. I am so grateful for the support and the advocacy work of many others — so much needs to be done! It’s encouraging to see more and more ostomates rising up on behalf of one another to end the stigma.