Thriving with Crohn's Disease

Seven years ago, I was not sure about anything.

I’d been debilitatingly ill for a while already, with no answers and no reasonable treatment options. I was in and out of hospitals and doctors' offices, trying a smattering of medications with little success. I was mostly homebound, never feeling confident enough about my bowels or my strength to venture out often.

I was spending many nights falling asleep sitting on or lying beside the toilet. My mental health was just as bad as my physical health, with depression and anxiety crippling my every thought. I was struggling to figure out how to survive, and I couldn’t picture my life shifting even a little bit.

What changed in my Crohn's journey

Now, it wasn’t luck that changed my circumstances or my thinking.

It wasn’t a magic pill, or a fad diet, or one moment in time.

I had to work my way through the trenches in order to come out the other side. I spent a lot of time navigating and processing my thoughts and feelings in therapy. I met my now-husband in the midst of that work, and what started as a really wonderful friendship evolved into something so much more.

I was finally diagnosed with Crohn’s disease, several years after my symptoms began, and although it took another year to identify, receive approval for, and start the treatment that would later bring me a remission, the entire process helped me to find hope again.

I found a doctor, and then a care team, that believed in me, valued my insight as a patient and my goals for treatment and encouraged me to become an integral part of my own healthcare.

These small wins led to bigger ones.

The positives on the other side of diagnosis

When the light turned on at the end of the tunnel, it gave me bursts of energy and occasional feelings of rejuvenation. It led me to pursue writing, first in the patient advocacy space, then expanding to arenas aligned with my scientific background and healthcare-related degrees.

I got married. I tried to conceive. I went through IVF and became a mom. I trained to become a doula. I started a business. I found that sharing my experiences and my education to support and encourage others fulfilled me in ways I previously hadn’t known to be possible.

Today, I’m literally doing what I never thought I would be able to do.

Thriving with Crohn's disease

I’m living my best life, despite having Crohn’s disease. I’m thriving, despite having a calendar full of doctor appointments and infusions, a port in my chest, and a phonebook full of doctors (and nurses and insurance agents) to dial at a moment's notice.

I’m writing this not to brag, because that’s literally the least important thing in the world to me, but to share with you that this is possible. If you’re in the hard parts now, you’re newly diagnosed or failing your current treatment, if you love someone who is struggling with the symptoms of IBD - I want to serve as proof that life can go on. It can go back to normal. It can even improve.

It just takes time. And work. Persistence and patience and hope.

And community.

If you’re looking to find one, this space is pretty great. Our Q&A boards and forums offer a great place to connect with other patients, ask questions and find advice. You’re not alone. There are better days ahead.