The power of a Crohnie: When your friend calls during a flare up

A week ago a college friend who’s battled Crohn’s since she was 11 called to tell me her disease was spiraling out of control and that she’s getting started on a biologic—my heart immediately sank. My friend Mary McCarthy and I have been Crohnies since we met at Marquette University in 2005. At that time I did not have Crohn’s and I wasn’t aware Mary suffered from it. A few months passed and I was diagnosed. That’s when I found out she too dealt with the same chronic illness. This week, Mary shares her story of having IBD since 1995, and finding out decades later that not only will she be starting Humira injections…but, her parents have IBD as well.

I have had Crohn’s for most of my life, but I’ve dealt with it by taking medication and pretending I don’t have it.

However, I recently learned that my Crohn’s is severe. I am going to start Humira soon, and I expect the shots to serve as a constant reminder of the disease.

I have since turned to the Crohn’s online community for support and wanted to thank Natalie and other Lights Camera Crohn’s contributors for helping me.

I know Natalie from college, so she was the first person I called when I learned about my severe Crohn’s. Until now, I read this blog to hear about how Natalie was doing. When my disease took a turn for the worse, I started paying closer attention to posts like the one about giving yourself Humira. It wasn’t something I needed until it applied to me, but thank God there’s a place to connect with people who are suffering from the same illness.

Natalie told me amary2bout how she gives herself shots in her legs, and I immediately thought about this picture. Look at those hot legs! She looks great. I’ll be fine.

As I dug further into the blog, I also felt downright jealous of Stephanie Horowitz, an actress in NYC who put on a show called Flare: A Crohn’s Cabaret. What a humorous, artsy way of dealing with Crohn’s.

Stephanie’s post got me thinking about the endless possibilities to be part of the Crohn’s community.

For now, that means sharing my story and finding humor in having Crohn’s.

A few weeks ago, when I was waiting to have a colonoscopy, the nurse at the University of Chicago told me that she thought I was in college (God love her). I’m really 34, and I’ve had Crohn’s since I was 11, which means I have more than 20 years of stories.

As a kid, my mom used to take me to a pediatric specialist at the University of Chicago, where we would wait for an average of five hours in the waiting room. I would then be examined by several different medical students. They would huddle around me and eagerly ask the head doctor questions about my case.

Over time, I started to be a bit sassy with my visitors.

They would look at me with pity, and I would have none of it.

They would ask me about my diet, and I’d tell them I felt fine and would continue eating whatever I wanted.

They would ask me how my medications were working, and I would tell them with full confidence which ones were working and which weren’t.

I’m still very much the same way with my doctors, but I’ve learned to temper my attitude over time. My parents and I still laugh about it. I refuse to be “sick.” I always will.

Mind, body, family connections.

My dad was diagnosed with ulcerative colitis in his 50s, and last year, my mom was diagnosed with Crohn’s at the age of 63. It’s a topic we discuss more frequently now, and I’m lucky to hear firsthand what their doctors have told them about managing IBD later in life.

mary3

My dad was part of a research study at Rush University a few years ago where he did yoga for several months while the researchers tracked his symptoms. I asked him for the results of the study for this blog post, but he has not received them. Instead, here is what he said:

My assumption—and I think it’s a safe one—is that there is some positive correlation between increased stress and flare-ups of UC, and that some mastery of stress management reduces the frequency and severity of flares. Regular physical exercise and regular meditation/visualization — and yoga is something of a combination of the two — do wonders, in my opinion.

That’s reason enough for me to commit to a daily practice of slowing down, meditating and visualizing the person I want to be—with and without Crohn’s.

If you currently meditate or you’d like to start, please leave a comment and let me know about your experience with it. If there is enough interest, I’d love to write a blog post more focused on the connection between managing a chronic illness and taking time to meditate.

Mary McCarthy is a consultant and career/life coach living in Chicago. She helps people with Crohn’s and Colitis thrive in their work and life in spite of their illness. Contact her at mary@clrtycoaching.com if you are interested in her one-on-one coaching program for people with IBD.

 

 

 

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