3 Things I’ve Learned in my 28 Years with Crohn’s Disease

This post is sponsored by Verily. As always, I write what I truly believe in and stand behind, whether I’m paid for it or not. But you knew that already!

I was diagnosed with Crohn’s disease when I was 7 years old. At the time, I had no idea what that meant — and neither did my parents. It was 1992, long before we had internet access and Google at our fingertips. We had my pediatric gastroenterologist, who was a 45-mile drive from our house, and the monthly mailers with updates from the Crohn’s and Colitis Foundation. But other than that, we were pretty much in the dark, navigating each icky symptom and nasty steroid side effect as they came.

I’ve been living with this disease — a diagnosis of which was later upgraded to “Crohn’s Colitis,” because why not be a true overachiever and have both inflammatory bowel diseases at once? — for nearly 28 years now.

Sometimes I think I know my body better than anyone. I’ve felt so many weird things, I’ve undergone so many invasive tests, and I’ve tried so. many. drugs. But other times, I still feel like that 7-year-old in the dark, crying in pain in the bathroom at the hospital, holding my dad’s hand from the other side of the door, which was open just a crack. While there’s no cure, researchers at Project Baseline are working hard to gather as much information as possible to better understand Crohn’s disease and ulcerative colitis.

Living with Crohn’s is never easy. Because my primary symptom is the urgent and unpredictable need to use a bathroom right this second, I can never really venture beyond the confines of my apartment feeling totally relaxed. I am a public restroom connoisseur. No matter where I go, I know where I can go, if you know what I mean. (Perks of running with me: I always know where all the bathrooms are along our route!)

Now, I may openly share what my life with Crohn’s is like, but I rarely give advice. I’m not a doctor (surprise!), I’m not a registered dietitian (double surprise!), and I’m not cured (there is no medical cure for Crohn’s disease — yet). So, I’m in no place to give advice regarding medication, diet, or how to fuel for a 20-mile run when you have a sensitive stomach.

But there are a few things I will preach about, tirelessly, because I think they’re important. Let’s start with three:

1. You must ruthlessly, relentlessly be your own advocate.

You have to trust your [leaky] gut. You have to stand up for yourself, in doctor’s offices, when dealing with insurance companies, and in social situations when you want to leave because you’re sick or fatigued and everyone is pressuring you to stay. Having a chronic illness is a tremendous, lifelong lesson in how to realize your own needs, vocalize them, and stand by them. No one else is going to make your appointments, find you the best doctor, navigate your deductibles, or sound off when it seems like you should maybe try a different treatment. It’s all you. It’s a lot! Managing a chronic illness can feel like a full-time job. And as much as other people can and hopefully will stand by you and help you, it’s all you, baby. Use your voice. Loudly if needed.

2. Do not let yourself fall into the Crohn’s disease comparison trap.

Some people can eat whatever they want. Some can run marathons. Some swear by celery juice while others exist on ice cream. It can be tempting to follow someone on social media and say, “Well, she went keto and cured herself, so I can do that, too.” It’s great to connect with a community, either online or in real life. But it can be frustrating when what works for someone else isn’t working for you. Try to tune it out.

3. Try talking about it.

That online or in-person community I just mentioned? That just might save your life. When I was going through the worst flare of my life in 2013–2014, I had some really dark and scary days. Days when I no longer wanted to be alive. I really, truly mean it when I say this community right here is a huge part of what kept me going. I have a hard time talking about this disease and how I’m feeling with my real-life loved ones. I feel like I’m a burden. I don’t want to be a downer. I don’t want them to worry. It’s easy for me to share online, where it sometimes feels like I’m just chirping into the internet abyss. However, that’s where I’ve also found so much magic. By sharing my story honestly, I’ve connected with dozens, maybe hundreds  — there are so many of us — of people who either have Crohn’s or colitis, or know someone who does. It’s so unbelievably powerful. I know it can be tempting to keep these diseases quiet. They’re bathroom diseases. They’re not cute! But connection is a powerful thing. It may help to seek it out in whatever form works for you.

So why am I sharing all of this today? Because, as you may have gathered, I care a lot about spreading awareness for Crohn’s disease and ulcerative colitis, and about helping ensure we keep moving forward in learning more about these diseases. I really truly believe that the more we share, the more open we are, the more we communicate, the more likely we are to see a cure in our lifetime.

A cure would be so great, don’t you think?!

So — want to share and help? Enter Project Baseline.

Project Baseline’s Gut Research Project  — run by a team of researchers, clinicians, engineers, designers, advocates, and volunteers — was created with the goal of helping researchers better understand gut health. They’re developing and adding to the map of human health, and they want you (and me!) to help contribute.

What does all that mean, why does it matter, how does it work, what do you get for it? Glad you asked!

If you choose to participate in the Baseline Gut Research Project, you’ll participate in a survey about your own health history and may share your electronic health records so researchers can get a holistic, all-things-accounted-for view of your health history. It’s a place where those with IBD can share health information so scientists can gain a better understanding of Crohn’s disease and ulcerative colitis.

OK then! It’s a no brainer! You can make an actual difference here.

You want something in return? I get that. Other than, oh I don’t know, maybe a cure someday, here’s what else you get for participating:

• Compensation for your time
• First access to relevant studies, and future access to Crohn’s disease and ulcerative colitis-related opportunities
• Exclusive access to the Project Baseline community
• Participants may receive a free Picnic Health account so you can see all your own records in one place (cool and helpful!)     

CLICK HERE to get started and participate in Project Baseline. It would mean a lot to me.

Crohn’s disease cure in 2020! Let’s do this! (JK. Kind of. I’m an optimist!)