First person: Having ulcerative colitis, a chronic disease, is a pain in the butt

When someone tells you they are having a crappy day, if they are like me, they literally may be having one.

I have ulcerative colitis.

If you’re thinking, what is that? You’re not alone. When I was diagnosed 19 years ago, I had no idea what my doctor was saying when – after extensive blood work and a colonoscopy – I was given the diagnosis. What is this guy talking about? 

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I went home and did my research. And more research. Please heed my advice and don’t Google everything, especially when it comes to your health. I was 19, in college, and working part-time, but reading about my condition (there is no cure) and all the side effects (trouble conceiving a child. And I wasn’t even sure I wanted kids) upset me.

Since being diagnosed there have been many ups (being in remission for years; having the amazing support of my friends and family) and downs (large welts appearing on my legs making it difficult to walk; losing so much weight that I was less than 100 pounds; gaining an extra 30 pounds due to the medicine I was taking; having to sit in the hospital for hours trying out a new, intravenous drug – I can go on and on).

Through it all, I’ve tried to raise awareness about ulcerative colitis. For the past 12 years, I’ve been involved with fundraising efforts with the Crohn’s & Colitis Foundation of America (CCFA). My team, the Beach Bums, has participated in Ocean City’s Guts & Glory 5K for the past 11 years. It’s one of my favorite days in the summer – seeing so many people support those who suffer from these chronic diseases is inspiring. And the team names people come up with tied to the disease are hysterical – Party Poopers, Frequent Flushers, Strollin’ for the Colon and more.

I can go into all the crappy details (pun intended!) about the disease but I won’t bore or gross you out. You can find out more athttp://www.crohnscolitisfoundation.org.

I am writing this column because I don’t think anyone should feel ashamed of something that is part of them – something they are dealing with that might not be the most pleasant thing to talk about. 

When I started talking more about my disease, I found other people dealing with similar stomach or intestinal issues. Friends and family thanked me for making them aware of the disease (you never know what someone is dealing with).

How did I found out about my condition? I started having really bad stomach pains (I called them spasms) while I was sitting in my college classes. I finally went to a doctor – they thought it was nothing. But after more alarming things started happening with my body, I visited a gastroenterologist who ordered blood work and a colonoscopy (they aren't just for those 50 years old and older).

He gave me the news and started me on medicine. I still remember my mother filling up one of those pill boxes with all the drugs I now had to take and crying.

So, my point, don't ignore your body when it's trying to tell you something.

Sometimes you just have to laugh….because, well, that’s life – s%$# happens.