My journey with Crohn's disease has not been an easy one. I started experiencing symptoms when I was just 8 years old. I had a lot of stomach pain, and many trips to the bathroom with chronic diarrhea. It was terrible.
Unfortunately, I was misdiagnosed for years. My family took me to a multitude of doctors, and I was diagnosed with everything from food allergies to irritable bowel syndrome. The doctors also thought my symptoms were stress related. As I entered into my preteen and early teen years, the pain had become so severe that I made several trips to the emergency room, where the doctors blamed it on menstrual cramps.
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 really limiting.
The hardest misdiagnosis for me was when one doctor implied that what I was experiencing wasn’t physical, but psychological. He actually pulled my mom aside and said he thought I was just making it up for attention. My family and I knew that was nonsense, but it was still really hard for me, because I was desperately searching for answers and relief. I felt like the medical system had failed me.
Despite my challenging symptoms, I continued to maintain a pretty active lifestyle. I was living the life of a typical teenager. I was really involved with school activities and clubs. I was on my high school cheer team, and I loved to hang out with friends. Then there was a dramatic shift in my quality of life, as my symptoms started to invade every aspect of my existence. I missed a lot of school, and I wasn't able to attend many of the major high school events.
Eventually, when I was 15 years old, the pain became so excruciating that I went to the emergency room. Although, I had already been to the ER several times before, the pain had never been like this before. It literally felt like I was dying. That was the very first time that anybody had ever run any real tests to try and determine the source of my symptoms. That ER visit finally led to a proper diagnosis: It was Crohn’s disease.
The word "disease" is terrifying in and of itself, especially for a teenager; But because I had been living with such painful and embarrassing symptoms for so long, it was a relief to finally have an answer. I was admitted to the hospital for two days, and I was sent home with 80 milligrams of prednisone — but that was it. Although I could finally put a name to my problem, I wasn't provided with much education about living with the disease.
My family and I had little knowledge of what Crohn's disease was. There's no history of the condition in my family, so we were at a loss in terms of what the next steps should be. My family, like a lot of people would, turned to the internet for a lot of their questions and the resources available to patients and their families.
Two weeks after my diagnosis, I was back in the emergency room. I had a perforated colon and needed surgery.
I was very fortunate to have a surgeon who prepared me for the possibility of waking up with an ostomy. Prior to facing surgery, I didn't really know what an ostomy was, other than information from a brief article I had read of the many my grandma had printed out. I remember saying to a friend, "Oh my gosh. People with this disease have these disgusting poop bags. I hope I never have to get one of those.". I was mortified at the possibility of ever having to get an ostomy and here I was headed into surgery.
It had been just two weeks since my diagnosis, and I was still trying to wrap my brain around the fact that I had a chronic condition with no cure, and now I needed surgery, and might wake up with an ostomy bag. Things felt like they were spinning out of control.
Sure enough, I woke up from that surgery with an ostomy. Due to the perforation and the state of my disease, I had complication after complication. I didn't end up leaving the hospital for eight consecutive months after my first operation. I had a total of seven abdominal surgeries within the first year of my diagnosis, and five of those surgeries resulted in an ostomy.
Being in the hospital for so long and being so sick, I definitely missed out on my teenage years. I was confined to a hospital bed and a life focused on my disease. My priorities were pouch changes, wound vac care, PICC (peripherally inserted central catheter) line placements, and TPN (total parenteral nutrition). I couldn't eat by mouth, so I was relying on IV nutrition to maintain my weight. I was on antibiotic after antibiotic and trying different medications in an attempt to get my disease under control.
My diagnosis was like the flip of a switch: My life just changed after that point. It wasn’t until I left the hospital that I really faced the social or psychological challenges of living with inflammatory bowel disease.
I was fortunate to have an immense amount of support from my family and friends. My cheer friends rallied around me and became almost like my personal little cheer team, and that really encouraged me during the time that I was in the hospital and recovering at home. If I hadn’t had the support that I did during those eight months, I really don’t think I would have the attitude about living with Crohn's disease and an ostomy that I do today. Support makes a world of a difference for anyone living with a chronic illness. I'm just so grateful for all of my friends and my family for surrounding me and reassuring me that despite my diagnosis, they would love and support me unconditionally.
Any chronic illness is isolating, but with Crohn's disease, your symptoms are not something that you want to talk about openly and publicly, which makes you feel even more alone. To have a network of support, whether it be online or in person, is so important, and I think it plays a crucial part in the psychological healing process after being diagnosed.
I’m 27 now, and looking back, I’ve come so far since my diagnosis. Not only am I on great medications that make my symptoms manageable, but I’ve also found myself again.
I became very involved in advocacy and raising awareness within the IBD and ostomy communities. I knew I never wanted another patient to have to go through what I did — those feelings of isolation and insecurities based on something completely out of my control. I started consulting for different companies by sharing my story, sharing what it's like to live with an ostomy, and how my ostomy allowed me a new chance at life. These experiences really empowered me as a patient and increased my confidence. I became passionate about encouraging others that your disease doesn't define who you are. Your condition can definitely help shape the person you are today, but it doesn't have to be the label stamped across your forehead. For me, I learned to find a balance by being involved in advocacy without making my whole life about Crohn's and ostomies. My experiences also inspired me to help others from a clinical standpoint. My goal now is to go to medical school so that I can help patients — both emotionally and in other life-changing ways. I’m in school full-time, and it feels good to be working toward that goal of becoming a physician. I also got engaged earlier this year, which has been an amazing milestone for me, considering that my 15-year-old self was convinced that nobody would ever want to even be in a relationship with me. Finding love was another thing that encouraged me that you can live a normal life with Crohn’s; it doesn't have to limit the person that you want to be.