(BPT) – My path to diagnosis
In my late twenties, I was leading a relatively “normal” life. I had graduated from college, landed a full-time job and was living on my own. I had my own insurance, which was a huge thing to me, because behind the scenes, I was dealing with symptoms of a chronic illness.
I had been living with Crohn’s disease and experiencing symptoms like abdominal pain and frequent bathroom visits for the majority of my life, but my Crohn’s disease became intolerable when I was 31 years old. I put everything on hold in order to focus on my health. Through the frustration of moving back in with my parents, I was able to channel my anger into getting smart about my health, and getting more involved in my healthcare plan.
Taking action and finding the right doctor
My Crohn’s disease symptoms were always there, and always very present, but I just managed. I dealt with or ignored my symptoms and put off doctor’s appointments, so I knew that I lost things I had worked for because I wasn’t an educated patient. It also took me a long time to officially be diagnosed with Crohn’s disease.
After being persuaded to find a gastroenterologist, I turned to the Crohn’s and Colitis Foundation (CCF) website, and was quickly overwhelmed by the amount of choices. So, I did what most people my age do — I went to Facebook. I found a local CCF chapter page and used it to ask for gastroenterologist recommendations in my area. Between researching on my own, and one of the recommendations I received, I was able to find a gastroenterologist and get an appointment immediately.
After my first appointment, I could tell this gastroenterologist was the right fit. My frustration was replaced with vindication, as my doctor listened to how I was feeling, and was committed to helping me learn more about my condition while finding a treatment that would help get my symptoms under control. We’ve worked together to find a treatment that works for me, and it hasn’t been easy.
After failing on a few other treatments, my gastroenterologist and I decided to try a biologic medication approved for Crohn’s disease. It’s been more than a year, and I’m still taking the same biologic medication. While I still have some bad days, my treatment has helped relieve my symptoms, and I am able to get back to doing some of the things I need or want to do, like going out to eat with family and friends and even traveling. Enjoying these activities may seem routine for most people, but for me they mark progress, a victory along my journey.
Becoming my own advocate
When I look back on my journey with Crohn’s disease, particularly the early years when I was uninformed about the disease and didn’t take an active role in my care, I realize I have come a long way. I have learned that I must be the first line of defense when it comes to my health, which means diligently tracking my symptoms, appointments and lab results, as well as speaking up during appointments.
This transformation as a patient has inspired me to share my story in hopes that it will help others living with Crohn’s disease not give up on their journey to symptom relief. When I first started truly learning about my disease, I quickly learned there was a lot of bad information online and how to sift through it and find sources that were legit; much like researching for a college paper. I hope that people can take my experiences, even the bad ones, and use them to help navigate their own journey.
Visit www.youtube.com/crohnicles to hear more about Jaime’s experiences with Crohn’s disease and her current treatment journey.
This content is published by Janssen Biotech, Inc., which is solely responsible for its content. Jaime has been paid for her time in connection with this project. The material presented is intended only as information or as an education aid and is not intended to be taken as medical advice. The ultimate responsibility for patient care resides with a healthcare professional.