Humor, Humility, and Purpose with Crohn’s Disease

In this guest post, our friend Tony talks about how he takes on Crohn’s Disease, why it’s brought a purpose to his life, and why he believes it’s important to share our stories with honesty, humor, and pride. You can follow Tony on his personal blog, HomoCrohn: Thriving as a Gay Male with Crohn’s Disease.

I’m in year 12 of having Crohn’s, but after factoring the onset of my symptoms, I would say I have 15-17 years under my belt in navigating life with Crohn’s disease. I want to address why, personally, my Crohn’s disease is a source of great pride and accomplishment. Sure, it’s everything else that comes with inflammatory bowel disease, but I feel blessed to have discovered that Crohn’s can, and has become, so much more to me.

To give you a sense of how I live my life vis-à-vis Crohn’s disease, I’m highlighting two of my burgeoning collection of Crohn’s selfies. And, I have to credit Instagram for adding mood lighting.

So as to clear up any confusion, Crohn’s absolutely, without question changed my life in a very fundamental way. Crohn’s disease nearly killed me at age 17. I’m 30 now, and I can still remember most days that I spent inpatient at Nemours/Alfred I. duPont Hospital for Children in Wilmington, DE. The pain was unlike anything I thought imaginable.

By the time I was admitted, I had emaciated away to practically nothing. Bones jutted. My nails, clubbed and striated, looked like someone with many decades on me. My former Italian-American olive complexion has degenerated to a clay colored pallor, and my hair had fallen out in patches. Moving any part of my body was a tremendous undertaking, and the classic, lower right quadrant pain was unbelievably excruciating. I can still close my eyes and smell the putrid, vile odor emanating from me. Showering was out of the question.

I ended up having emergency surgery when all signs (correctly) pointed to a ruptured appendix, which was due to one of the four fistulae the surgeon removed, along with a foot of my intestines, including my ileocecal valve. Ever since my diagnosis and surgery, Crohn’s has been a constant presence in my life. I’ve been on almost every possible medication, have endured multiple extraintestinal manifestations of the disease, and have had so many “unfortunate” bathroom accidents that I’ve lost count.

Despite all of the above (and there is so much more), Crohn’s disease ignited in me a call to action. I trace my identity as an educator to a specific moment during my hospitalization, wherein I made a promise (not to anyone in particular, but just a promise) that I would do good. At the time, I didn’t really have a plan as to what that meant, but I’ve put myself, my guts, my gas, my bowel movements, my surgeries, my many medications on the line because I believe it’s the right thing to do. I cannot rightly say it’s simply an altruistic action on my part, because I gain a sense of purposefulness by sharing my story. I’ve always been an extroverted, witty, and affable guy. I’ve never been shy or foreclosed. And, basically, I made a promise that I would treat Crohn’s disease – my Crohn’s disease – in exactly the same fashion.

If we can have marches and walks and fundraisers and celebrity endorsements for breasts (which had to overcome a different, but related battle, as breasts are a sexualized portion of the body) and breast cancers, I feel that we can do similar work from inflammatory bowel disease. That means we have to be honest about crap. The crap that comes with living with IBD, and the voluminous amounts of crap (stool, poo, feces, etc.) that we collectively expel with volcanic force. I certainly understand that this is off-putting to a great many, and not all Crohnies and UCers would and should feel comfortable framing this component of the disease as I do.

However, I see signs of progress. I saw Maya Rudolph’s character in Bridesmaids give all of us with IBD a new label for those “gotta go” moments when we don’t make it. I had my own Bridesmaid moment. I really tried to make it back to my apartment. But, I didn’t, and I popped a squat on a very busy road in San Diego, and that was that. And, while I don’t want to trivialize those possibly embarrassing moments by referencing a popular recent comedy, I really do feel that scene opened the door. Other signs are evident: Charmin toilet tissue is urging us (haha . . . urge) to enjoy the go.

As a patient advocate from Crohn’s disease and ulcerative colitis, I try to infuse humor and humility into my story. I don’t shy away from the pain, the terror, the tears, and the truly horrifying experiences I’ve had because I have Crohn’s disease. But I’m also very happy to share with others the wonderful things Crohn’s has done for me.

The people I’ve met through Team Challenge San Diego, the increased awareness I have about my own health, and my role in my health care, the countless people in my life who have thanked for me for speaking my mind (or, my gut). I would not have those gifts without also having Crohn’s. My indefatigable and indomitable spirit, and my earned (yes, I’m not afraid to admit this) pride in my accomplishments and myself are directly related to having Crohn’s disease. So, I encourage everyone out there to not just live with IBD, but thrive. Be proud. Value your accomplishments, and take time to think about how IBD has affected your life, but remember that it sometimes takes a little more effort to see those silver linings. But, I believe, they’re definitely there.

Apart from being a Crohnie Crusader, compelled to spread frank yet humorous awareness about Inflammatory Bowel Disease, Tony is also a PhD student in higher education and women’s studies at Penn State University. New to the blogosphere, Tony blogs about the intersections of his multiple chronic/incurable medical conditions and his identity and life as a fierce, witty gay guy*. Because one incurable disease isn’t enough, Tony also lives with Classical Type Ehlers-Danlos Syndrome, a heritable genetic disorder affecting the body’s connective tissues (which also affects his gastrointestinal tract). Follow along at HomoCrohn: Thriving as a Gay Male with Crohn’s Disease!