Living with Ulcerative Colitis

It’s taken me awhile to write this post. I’ve been wanting to write it since I started this blog because I think it will shed some light on why I wanted to join Team Challenge to train for the Las Vegas ½ Marathon and fundraise for the Crohn’s and Colitis Foundation of America (CCFA), a nonprofit organization dedicated to finding cures for Crohn’s disease and ulcerative colitis and improving the quality of life of children and adults affected by these diseases.

I debated on what details to share. I landed on sharing enough for you to understand my experience and know more about these diseases. I say this because I have to warn you that Crohn’s disease and ulcerative colitis aren’t sexy – they’re digestive diseases so symptoms deal with digestive issues. Not always pleasant.

A Little About Ulcerative Colitis

So, if it’s not obvious from the title of this post, I have ulcerative colitis (UC). I talked about this some in my first blog post, but to recap UC is an inflammatory bowel disease (IBD) that affects the large intestine (a.k.a. the colon) where the lining of the intestine becomes inflamed and develops tiny open sores, or ulcers. UC is an auto-immune disease, so the immune system is basically attacking itself. It’s also a chronic disease, meaning there is no cure. Medications can treat the symptoms and reduce inflammation, but once you’re diagnosed you’re in it for life, but hopefully one day that will change.

Symptoms of UC can include more urgent bowel movements, abdominal cramps, diarrhea, and rectal bleeding (see, I warned you).

Really quick, Crohn’s disease is also a chronic inflammatory bowel disease, but it can affect the whole gastrointestinal (GI) tract, not just the colon.

My Story

I first started experiencing symptoms in high school. I went to a few doctor appointments where they speculated different things that could be causing them and suggesting treatments. Symptoms would go away for a while, but they kept coming back. Then, in my sophomore year of college, my symptoms had returned and I went to the doctor for a test where I was finally diagnosed with colitis.

So, I actually went a few years without a proper diagnosis. It’s tough to have pain or other digestive issues (like seeing blood when you go to the bathroom) and not know what’s wrong. It can make your head jump all over the place as you speculate what’s wrong with you.

After I was finally diagnosed in December 2005, I had some relief in knowing what it was, but then there was the process of finding a treatment that would keep the symptoms at bay. I tried several different medications until we finally found one that worked.

Like I said, UC doesn’t have a cure, so symptoms just have to be managed. When symptoms pop up, it’s called a flare. When symptoms are gone, it’s called remission. Some patients can stay in remission for years. I’ve been lucky enough to be one of those people. Finding the right treatment was the key.

I knew that what I had could be treated, but I have to admit that I really didn’t know anything about my disease. For some reason, it didn’t occur to me at the time to learn more—maybe because I wasn’t experiencing symptoms. While I always felt like I had good doctors and nurses, I realize looking back that they never really explained to me what UC was. I even asked my mom recently if she remembers them educating us on the disease and she said no.

I felt a lot of embarrassment about having UC. I didn’t tell anyone about my symptoms or the disease because I thought I had something that was unusual for people my age. I thought these digestive issues were something that “older people” have to deal with, not a college student.

It wasn’t until about a year ago that I really started to learn more about UC. One of the first things I learned is that while Crohn’s disease and UC can affect people of any age, it is actually most commonly diagnosed in children and young adults. Turns out I wasn’t a freak of nature! Learning this and learning more about the disease helped me feel more open to talking about it with friends and family.

Then, I learned about Team Challenge. It was actually from my nurse practitioner at my annual GI check up. I told her I had started running and she asked if I had ever heard of the program. As soon as I read about it, I knew I wanted to participate. I was excited for the opportunity to not only train for a half marathon, but also connect with others who are living with the same disease I am. I knew joining Team Challenge and fundraising for CCFA meant I would have to start talking about my UC. This was a bit scary at first, but as I started to talk about it, I found that I have lots of family or friends who have or know someone who has Crohn’s or colitis. Being more open about my disease has really helped me build a bigger support network. I’m very blessed to have such understanding and caring family, friends, and co-workers.

My experiences are why I’m participating in Team Challenge and working to raise funds and awareness for the Crohn’s and Colitis Foundation of America. I’ve been able to manage my disease pretty well so far, but who knows how long that will be the case. Unless a cure is discovered, I’ll be taking medication for the rest of my life and possibly continuing to go through periods of flares and remission.

The funds and awareness raised through Team Challenge help CCFA provide vital services and fund research that will hopefully make IBD an acute disease rather than a chronic disease.

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