Crohn's Becomes Part of Your Identity

Editor's note: Between the pain, symptoms, flares, and other daily challenges, life with inflammatory bowel disease (IBD) is hard. We want to shed light on these challenges during Crohn’s and Colitis Awareness Week (December 1-7, 2019). Crohn’s and colitis are often invisible illnesses, and therefore not always understood by others. We asked our advocates a series of questions to raise awareness about many of these invisible aspects of the condition. Here’s what they had to say!

Crohn's is unpredictable

The most difficult aspect of living with Crohn’s is the unpredictability of the disease. Every single flare up and hospitalization I have experienced has blind-sided me. I’ve gone from anchoring the morning news and training for a half marathon to being a hospital bed with a bowel obstruction, all in a 24-hour period.

Even though I’ve had IBD for more than 14 years, dealing with the uncertainty of when my disease is going to strike next is an extremely challenging mind game. Back in 2015, I was told after a colonoscopy that I was in remission. It was the first time since my diagnosis in 2005 that I ever heard the word “remission” come out of a GI’s mouth. Fast forward a week later, and once again, I was hospitalized with a bowel obstruction. That experience, in particular, took a lot of mental healing, as I felt like I completely fell from grace and that I had no control over my illness.

What does pain from Crohn's feel like?

The worst symptom I experience during a flare-up is the gnawing/stabbing abdominal pain that lasts for hours upon hours. The type of pain that causes you to vomit and even blackout at times. When I’m in the middle of a bad flare that requires a trip to the ER, I often can’t even walk on my own because the pain in my stomach is so intense. During one hospitalization in my late 20’s, my dad had to carry me like a newborn child from the parking lot of the ER into the hospital. My parents couldn’t believe I was unable to walk at the time. When this is happening no pain medication at home or trip to the bathroom calms the pain, it pushes you to the brink. Oftentimes I lose feeling in my arms and legs because I get so worked up.

Crohn's is always there, even in remission

One thing I wish more people understood about Crohn’s is that even though you haven’t required hospitalization in years for a flare, it’s still a part of your life on a daily basis. Every single decision you make from the start of your day to the end of it requires thinking on your part about how it’s going to impact the way you feel. As an invisible illness, it can be complicated because you can easily mask the pain with a smile or by isolating yourself.

I wish friends and family understood the mental and emotional impact of what it’s like to live with a chronic illness for which there is no cure. As a mom of two little ones, I also feel there’s a lack of understanding about how fatigue plays a role in the illness.

You are not alone in your diagnosis

If I had to give one piece of advice to someone newly diagnosed with Crohn’s, I would tell them that the first year will be the hardest in their patient journey. Coming to grips with the fact you have an often debilitating, serious chronic illness takes a lot out of you. So much of life with IBD is a mind-game. If you are going to constantly think ‘woe is me’ and feel sorry for yourself, it will be a self-fulfilling prophecy.

Give yourself time to grieve your former self, but realize that while IBD is a big part of who you are, it is not all of you. You can still accomplish your goals and dreams, you may just need to take some detours along the way. Be patient with yourself. Reach out to fellow patients on social media and through blogs and open yourself up to support. You are not alone in how you are feeling and brighter days are ahead.