Jaime
Chron’s Disease
At age 31, Jaime couldn’t walk without intense pain. Her joints swelled, her nerve endings were on fire, and her digestive issues were unbearable. Jaime was misdiagnosed for nearly a decade. It took another seven years to receive proper medical treatment. In that time, Jaime’s symptoms worsened and her health deteriorated. Read more about Jaime’s extraordinary story and her relentless efforts to advocate on behalf of patients with inflammatory bowel disease.
My health issues started when I was about 5 or 6 years old. My symptoms manifested in ways that were not typical of a young child. During my tween and teen years, I would often be out of school for weeks at time. A year prior to high school, I was diagnosed with Epstein-Barr virus. By high school, my digestion issues were beyond unbearable. This pattern continued through the early high school years, along with countless medical appointments, missed school, coupled with stress and consistently feeling incredibly sick. Eating was a non-starter. I was weak, in pain, and lived in a constant state of embarrassment.
There seemed to be no end to doctors’ appointments, treatments, and medicines – none of which were helping. I was talked at and never talked to. There was never an explanation about the uncomfortable examinations or testing ordered for me. But there was a constant…more specialists and no answers.
At around age 15, I was misdiagnosed with “severe irritable bowel syndrome” (IBS). There wasn’t much that could be done back then. Despite receiving a few medications that helped dampen my symptoms, my condition continued to flip-flop all throughout the rest of those high school years.
At the ripe age of 23, I underwent a couple of procedures and received a true diagnosis — Crohn’s disease, which is an inflammatory bowel disease (IBD). Unfortunately, my doctor-at-the-time didn’t believe in treating the disease. Rather, he prescribed medications for the symptoms. A similar issue I experienced during my youth. And because of this, I didn’t know any better to question if this was the proper course of treatment for this disease. I continued down this path of placing a band-aid over my Crohn’s symptoms for another seven years. That is, of course, until I couldn’t mask these symptoms any longer.
I couldn’t sleep — couldn’t walk. I was only 30. Things in my life were going well, as I turned 30. About six months after that milestone birthday, things pivoted and began to roll downhill. Beyond my regular digestion issues, my joints began to stiffen and swell. The nerve endings in my feet sang out in excruciating pain after each step. I needed help, and fast.
After receiving a recommendation for a board-certified gastroenterologist about an hour from home, I begged for an emergency appointment. That first appointment was the first time I ever felt validated and heard by a doctor. She educated me on the intricacies of Crohn’s disease, ordered new testing, and then created a treatment plan with my feedback included. Unfortunately, my insurance provider had other plans.
Often times, doctors prescribe a particular medicine because, in their professional opinion, it will provide the best outcome. Unfortunately, we were told — repeatedly — that I needed to try other, less expensive and older treatments, first. Both my doctor and I knew they most likely would not work, but she was required to document failure before I could be approved for the medications she originally prescribed.
I experienced several awful reactions and this only complicated my case further. This was my initial rude awakening to the detriment that is step therapy. It delayed my ability to get well and get the treatments my doctor planned for me. I needlessly suffered and declined further, for an entire year, before my doctor got her prescriptions approved. It’s taken another eight years to heal and reach a satisfactory quality of life.
Becoming disabled due to step therapy became my catalyst to turn the tables and reclaim my health and life. I became educated on the intricacies of inflammatory diseases, treatments, and insurance practices. Raising awareness about IBD and step therapy’s harmful impact motivates me each and every day. As a professional writer and patient advocate, I am committed to making a difference and changing the status quo for patients like myself. Although I’m still recovering emotionally and physically, I’m up for the fight to do what’s right for my community.