I've had stomach problems my whole life, but before I was diagnosed with Crohn's pretty much every doctor I saw suggested I was suffering from a sensitive stomach. Whatever that means. Late in my senior year of high school, right around the time everyone was thinking about graduation, prom, and our senior trip, I started experiencing severe abdominal pain and constipation that lasted weeks. That bout led me to finally visit a gastroenterologist, and after a series of tests I was diagnosed with Crohn's.
When the doctor came back with a diagnosis of Crohn's, I had no clue what it was. No one else in my family has it -- I'm the only lucky one! -- so it was uncharted territory for me, my parents, and my two younger sisters. As we started reading about the disease and all the physical problems that come along with it -- fatigue, weight loss, fever, all sorts of things -- I realized this was the start of a new chapter in my life. And it was a frightening chapter, at first.
My college years in Virginia were really hard. Not only was I away from my family and friends back in New Jersey, but I was in new territory, meeting new people, and you know how it is when you're a teenager: you don't want to be different. You want to make friends easily.
I still had no idea how to control my symptoms -- what to eat, what not to eat. But now that I knew what the problem was, and now that I could put a name to it, I thought I could move forward. I was in denial about how serious Crohn's really is, and I did not take care of myself. I didn't want people to see me constantly running to the bathroom or not going out at night, even though the pain was so bad that all I really wanted to do was stay in bed.
Fortunately, I had an amazing group of friends in college. They didn't treat me any different than anyone else just because I had Crohn's, and their attitude was critical in helping me get a handle on my own health. Every time I had to go to the hospital, they were right there with me. In fact, one of my friends drove me up to New Jersey from Virginia so that I could go to my regular gastroenterologist. It wasn't a big deal -- to them. But it was a huge deal to me.
At my wedding last November, my dad gave them all a big shout-out for everything they had done for me through the years. They loved it -- the same way they loved it when we were in school and my parents would come down from Philly and take us all out to a nice dinner.
I never knew anyone else with this disease until I joined CCFA [the Crohn's & Colitis Foundation of America]. That was the first time I had a support system where other people genuinely understood what I was going through. I would never downplay how important the support of my friends and family has been, but CCFA has opened up new ways of dealing with the disease.
Another challenge with this disease is that there are still days when the joint pain and fatigue are so bad that just the thought of getting out of bed is painful, but I don't look sick. When I have to cancel plans, when I have to stay in bed all day, some people just don't understand. And some people don't want to hear about the details because, let's face it, Crohn's really is a gross disease. Luckily, my husband is not squeamish about this sort of stuff, so it isn't hard to talk to him about what I'm going through.
My advice for anyone with any chronic illness is to find someone you can really talk to. When you're first diagnosed with something Crohn's, you won't want to talk about it because it can be embarrassing. You have to find a person or a group of people that you feel comfortable with, because not sharing what you're feeling gives the illness power over your life.
I try to stay active by running, walking, biking -- anything to help keep me going. It can be difficult to get to the gym, but I remind myself how good it feels afterward. That's my motivator.
I accept that this disease is a part of me now, but that doesn't mean that I have to like it. The way I see it, I have Crohn's, but Crohn's doesn't have me.