I don’t write about my experience with ulcerative colitis here very often because, let’s face it, who really wants to read about digestive issues?
And the truth is that while I have been living with this disease (ulcerative colitis is the result of an abnormal response by the body’s immune system; you can read more about it here) for 13 years, I am one of the lucky ones.
I found my magic combination of medication that keeps my system in check. I have only had two flares since my initial diagnosis in 2002. I have a fabulous and vigilant gastroenterologist who makes sure I’m towing the line in terms of regular blood tests, check-ups, and (ugh) colonoscopies.
Other than the fact that I take six pills a day and I’m considered “immunocompromised,” my ulcerative colitis has somehow just become part of who I am, like being a vegetarian, and I admit I’ve gotten pretty complacent about it.
But this past October, I got a reminder of the reality of living with a chronic disease.
As many of you know, I was diagnosed with pneumonia just after running the Smuttynose Half Marathon.
My GI doctor likes his patients to get the pneumonia vaccine because immunocompromised people are more susceptible to pneumonia, but I hadn’t had a chance to do it. So when I got sick, I did all the right things: I called my primary care doc, got an appointment, was sent for a chest x-ray (which confirmed the pneumonia diagnosis), picked up my Z-Pak (azithromycin) prescription, and took all my medication as directed.
Yet a week later I only felt marginally better.
I called my primary care doctor back, who said sometimes patients need something “heavier” to kick the pneumonia to the curb, and called in some hardcore penicillin. This made me really nervous, since antibiotics can sometimes impact the efficacy of immunosuppressive medications (and could possibly cause a flare), but I felt so miserable that the risk was worth the reward.
A few more days went by with just a small improvement, but I was clearly still sick.
I called my GI doctor to fill him in, and he told me to stop taking my UC meds for a few days to give the penicillin a chance to work.
Because, in layman’s terms, my body was all sorts of confused. On the one hand, the UC medications were telling my immune system to back off and stop mistakenly fighting the intestinal lining (which is what keeps my disease at bay), yet the penicillin was trying to give it a swift kick in the pants to fight the pneumonia bacteria.
You can see why I wasn’t getting better.
While taking a few days off wouldn’t trigger a flare, my gastroenterologist did warn me that the penicillin could make me susceptible to c.diff (a nasty disease on its own, and particularly awful for someone with inflammatory bowel disease), and to keep my eyes out for symptoms. UGH.
But as soon as I stopped taking my immunosuppressives, the pneumonia improved pretty dramatically, and within a few days of finishing the penicillin, I was able to resume my normal medication routine. And – thank god – I never developed any symptoms of c.diff.
I can’t help but feel like I dodged a bit of a bullet here. Things could have easily gone in another direction without my GI doctor’s wise input and a little bit of luck.
It was also a reminder that, while I sometimes forget, I am living with a chronic, autoimmune disease…just like millions of other people.
And so that’s why I am celebrating Crohn’s and Colitis Awareness Week (Dec. 1-7).
Because these are the facts: more than 1.4 million Americans like me are living with these Crohn’s disease and ulcerative colitis, which affect pretty much everyone: young, old, male, female, rich, poor, all races. It doesn’t discriminate. There is no known cure, medications don’t work for anyone, and an ulcerative colitis or Crohn’s flare can be debilitating, embarrassing, and painful. Which I know firsthand.
We also face an uphill battle when it comes to awareness of ulcerative colitis and Crohn’s disease because they’re uncomfortable and unpleasant to talk about. Discussing bodily functions and digestive issues simply aren’t the norm in our culture. So given the stigma, it’s easy to understand why many people don’t talk about their disease.
Which is ironic, since ulcerative colitis and Crohn’s are so-called “silent diseases,” meaning you can’t look at someone and know that they’re suffering.
But my hope is that by continuing to share my story and calling attention to this issue, and supporting the need for more research on these diseases, we might someday find a cure. So please do me a favor and join me in observing Crohn’s and Colitis Awareness week by:
- Checking out the Crohn’s and Colitis Foundation of America website.
- Join CCFA’s National Call-In Day on December 3 — that’s tomorrow! — to urge your legislator to join the Congressional Crohn’s & Colitis Caucus!
- Sign up to participate in CCFA’s Awareness Week Thunderclap on December 3 (again, tomorrow!) to make everyone #IBDAware (I’ll be doing it!).
- Consider joining Team Challenge, CCFA’s endurance training and fundraising program. (Their next stops? Rock ‘N Roll New Orleans Half Marathon and the Disney World Half Marathon!). Or think about joining Take Steps, CCFA’s national walk program, which is now recruiting for the 2016 walk season.
- Joining CCFA on December 5 in a city near you to spin4 crohn’s & colitis cures, CCFA’s new fundraising program!
- Wear purple to support a friend, neighbor, or loved one with these diseases.