A Decade Later

Ten years ago this week, in September 2009, my life changed forever.

Ten years ago this week, I was one month into a new job, one-year post-college graduation, and really excited to finally be living in the city.

Ten years ago this week, my life changed in an instant when I woke up one morning experiencing significant GI distress - something I naively (or routinely) assumed at the time would be short-lived.

I went to work, struggled through the day, took some over the counter medication, and went to bed early - five days in a row. Then, I called my doctor, asked if there was a bug going around and if they could prescribe something for me to get past this. One doctor's appointment led to many, one test led to several, and it started to become clear that what was going on inside my body wasn’t going away anytime soon.

The first years after the onset of symptoms

The first six years were the absolute hardest - inconclusive tests, doctors who told me it was all in my head, living without a proper diagnosis or treatment plan. Spending my days terrified and alone, fighting not just physically but mentally too.

As my quality of life deteriorated and my hospitalizations became more frequent, I started to wonder why I was fighting. What could come of this life when there was no end in sight for my misery and my pain? What was the point of trying to survive? I want to circle back to that in a moment.

Finally diagnosed with Crohn's

Fast forward to January 2016, when I was finally diagnosed with Crohn’s disease by the pill cam, a swallowable camera that traveled all the way through my small bowel and identified pockets of active disease.

That moment was the start of a course correction for my life, with the idea of hope returning for the first time in a very very long time. I went through a lot of trial and error with medications, a time where I knew what was wrong but I wasn’t able to fix it, and I kept wondering if my life would really ever get better.

Relief from symptoms

In February 2017, I began Remicade infusions, and about nine months in, my doctors and I were finally able to obtain the right dosing and frequency of infusions to allow me to really live my life again. When I realized that I was having more good days than not, my heart exploded. The relief was something deeper than I’d ever experienced in my life, and nothing could have prepared me for the hope it brought back to my life.

It’s now been 18 months since my last hospitalization, and about a year of being able to say that I’m currently in remission.

In that time, I underwent In-Vitro Fertilization, experienced a healthy pregnancy, and naturally delivered my daughter - things that I honestly thought I’d never get to do. Things that I wanted more than anything in life, but was terrified that my ill health would prevent me from achieving. Things that make my heart overwhelmingly grateful to this body I spent nine years literally hating, not understanding, feeling betrayed by.

Celebrating where I am today compared to 10 years ago

This week, I have been reflecting on the heartbreaking journey that began a decade ago, and I am celebrating where I am today. I am trying hard to think about and express my gratitude for all the things that have changed in my life and my hope for those things to continue onward, as well as my sincerest wishes that we can do better in the future for people in my position.

The standard of diagnosis with IBD continues to evolve, but it needs to include the “hard” cases, the ones that aren’t clear cut or identified by colonoscopy or endoscopy. My active disease should’ve been seen sooner, and believed much earlier on than it was. Had I not experienced those challenges, I might never have struggled so much with my mental health or my identity as a person outside of being indeterminately ill.

This week is also a time for me to thank my biggest cheerleaders - without whom I likely would’ve given up long before my story changed.

Do you find yourself reflecting on the anniversaries along the way of your IBD journey? When your symptoms started, when you were diagnosed, when the right treatment began? I’d love to hear below!