Nine Years Later

At 23 years old, my health changed.

At 23 years old, my life changed.

The initial symptoms

Nine years ago this week, I began experiencing symptoms of Crohn’s disease. As I have written in the post, “Trust Your Gut”, I was a normal 23-year-old when my life turned upside down. I was just a year post-college graduation, and three weeks into a new job when I began experiencing GI distress on a whole new level - pain that stopped me in my tracks, frequent and urgent trips to the restroom, nausea, and vomiting.

For more than six years I lived in a grey area with these symptoms. I saw so many specialists, underwent a significant amount of medical testing, bounced in and out of the hospital for emergency treatments, and tried every vaguely related prescription anyone could recommend, but I never saw very much improvement. Without having a diagnosis, without knowing what was causing my body to destroy itself and my life to implode, I felt constantly discouraged, I lived in fear, and I struggled with my mental and emotional health on top of the physical purgatory I was living in.

Finally diagnosed

As I’ve spoken to previously, I was finally diagnosed with small bowel Crohn’s disease almost three years ago through use of the PillCam (capsule endoscopy). This was a pivotal moment in my life - not just enabling me to get accurate and possibly adequate treatment for my disease, but also to process the devastation of the previous six years. Having lived so long as “undiagnosed,” I spent a great deal of time bartering with my body, my life, and anyone who might be willing to listen. I felt trapped inside skin that wasn’t mine and became not much more than simply a shell of my former self.

I always take time during this week to reflect on the pre and post diagnosis chapters of this chronic illness journey I’ve been on, of the last nine years since my life changed. This week I will head to the infusion center for my Remicade infusion, and remember sitting through the same thing last year at this time. I will fill my head and my heart with gratitude for the changes my life has seen and felt since I began this medication 18 months ago, and I will think about the 14 months between diagnosis and beginning Remicade, along with the six years before that. I will think both about the time, experiences and friendship I lost, and the ways in which I have been able to reclaim my life and my identify since entering a chapter of my life where symptoms don’t define every single day.

Reflections

It’s interesting to think back at my life and my health growing up. From birth to age 18, I only ever experienced a handful of doctors appointments outside of the normal physical exams and school required check-ins, and despite an intense figure skating accident, I had never stayed overnight in the hospital. Interestingly enough, I do remember having an abnormally high SED rate as a child, but my pediatrician never identifying a single cause for it. From as far back as I can remember, I have always experienced joint pain, specifically in my knees, but this used to be attributed to growing pains and participation in athletics. Sure, I also had grown up with a “nervous stomach” but I always chalked that up to “normal” as this was not uncommon in my family. Looking back, I always wonder if these signs should’ve pointed someone, anyone, to further testing then, or if they should’ve factored into the extremely lengthy diagnosis process I had to endure between ages 23-29.

Reflecting on all that has happened and changed in the last nine years, I do think it’s incredibly important to highlight a few things for anyone who is on a seemingly endless, bleak looking journey. To start with, there are not enough words for me to communicate the importance of and power in persistence and advocating for yourself. There were hundreds of chances along the way for me to stop in my tracks and swallow the reality that I would never get better because nobody knew what was wrong with me, but deep in my heart, I had to believe that somehow, someday things would get better for me.

A second opinion

Next, the medical field is saturated with physicians, residents, fellows, and in many areas, hospitals too. If you do not feel like your doctor(s) treat you like a person, I would keep trying again, and again, and again. In looking back, the first few years of my illness were filled with doctors who saw me as a time slot, or a check from insurance, or a nuisance. None of them knew who I had been before this all started, or who I wanted to become. They only saw a girl who wasn’t able to give them an easy, comprehensive picture. Both my current GI as well as the one I worked with previously are incredible people, and at every appointment they do a pulse check - not just on my Crohn’s disease, but my overall physical and mental health, as well as what’s new or changed in my life and how I feel like I am overall.

A fine-tuned treatment plan

Finally, as I alluded to earlier, the critical nature of finely tuned treatment plans is more important than I can express. It took more than a year after being diagnosed to land on a treatment (Remicade) that made any dent in my symptoms or quality of life, and then it took another eight months to determine the right dose, frequency, and pre-medication combination required for me to truly feel better.

Nine years has in many ways felt like a lifetime, but I am so grateful that it’s but a chapter along the way. Recently, I’ve been able to look towards my future with hope (instead of the fear or devastation that once loomed), to plan for things down the road, and to really take time to appreciate each milestone I have accomplished since this all began.

If you reflect on your IBD journey, do you identify with different chapters/challenges since you got sick, or does it feel more like time all blends together?