My doctor first suggested surgery in 2009, but I resisted. Flare after flare, I wouldn’t even discuss it. Remove my colon? You must be crazy. I’m not that sick. Sure, I go to the bathroom 20 times a day. Granted, I can’t go anywhere without first scouting the bathroom situation. Of course, I have to deal with emergencies and the occasional accident. Yes, I’m up several times a night to go to the bathroom. But I’m managing. I’m still working. I haven’t been hospitalized. I’m not losing weight. I’m not totally confined to my house. I just have to live with my flares until we find a treatment that works. Or so I had decided until my wake-up call at 30,000 feet.
In April 2010, I took a trip from California to Washington, DC as a volunteer chaperone/coach for a high school class competing in the national finals of the We the People academic competition. We had a 6am flight (when my UC is typically the worst), and I was really afraid of the 45-minute drive to the airport. Would I be able to find a bathroom? Would anywhere be open at 4 in the morning? Not wanting to chance it, I booked a hotel room near the airport for the night before. Totally normal. Unfortunately, it didn’t make much of a difference, as even the 10-minute shuttle ride to the airport resulted in a near-miss and a mad dash to the bathroom when I arrived at the terminal.
Five or six more trips to the bathroom and then we boarded the plane. I had to go again almost immediately, squirming uncomfortably as I waited for us to reach our cruising altitude. I couldn’t hold out and ran to the lavatory as soon as we hit 10,000 feet (and it was safe to use electronic devices). Two or three more trips within the first hour, each with increasing urgency. Each increasingly unpleasant and painful. This was not going well.
Somewhere over Utah, I was hit again with tremendous urgency. I knew I had less than a minute to get somewhere. I made a run for the main cabin bathroom, but the drink cart was in the aisle. I calmly explained to the flight attendants that it was a medical emergency and I needed to get by. Unwilling to move the cart 15 feet to the galley and let me by, they instructed me to go to the First Class cabin. Sweating, I dashed up the aisle to the First Class lavatory. Occupied.
Intensely focused on maintaining control, I patiently waited outside the door—until the cheerful flight attendant instructed me to “stand by the curtain” at the rear of the cabin. I explained it was a medical emergency and that I needed to get in the bathroom as soon as it was free. She instructed me again to “stand by the curtain.” I obliged until two other passengers jumped the line in front of me. I sprinted back up to the front, explained that I needed to get in next due to a medical condition. To my amazement, the flight attendant explained that the first-class lavatory was “theirs” (referring to the line-jumpers) and that I would need to go back to the main cabin. I told her that unless she wanted a major scene, she needed to tell the other attendants to move the fucking drink cart. She made the call, and I ran to the back of the plane, making it just in time.
The whole ordeal probably lasted 3-5 minutes, but it felt like an eternity. Thirty high school students and 100 strangers watching me run up and down the aisle, sweating, pleading with the flight attendants, freaking out. It was humiliating. It was terrifying. I returned to my seat and cried.
After a bunch more trips to the bathroom, we landed in DC. And I immediately ran to the bathroom. This was it. The medicine wasn’t working. I’d reached my breaking point. I couldn’t live like this anymore. I called my doctor, and he called in a new prescription for my best frenemy, prednisone.
The first two days in DC involved me staying behind at the hotel or suddenly ducking out of tours to find a bathroom** (“Where’d Ben go?”). Fortunately, by the third day (when competition started), the steroids were taking hold, and I was able to manage things (with some strategic bathroom planning) and fulfill my duties as chaperone/coach.***
This trip was my epiphany. My life was controlled by my disease. And my disease could not be controlled without steroids (and even then not controlled completely). I needed to consider alternatives.
* Incidentally, the We the People program recently lost its federal funding (after 24 years) and may not exist next year. You should call your representatives and urge them to save it. It’s worth every penny.
** I have used the bathroom at nearly every Washington, DC tourist destination. The monuments and Arlington Cemetery are not great (especially at night), but I’m pleased to report that the new visitor center at the U.S. Capitol has an excellent bathroom situation.
*** The class did amazing, placing second in the Universe. Notwithstanding my horrendous UC ordeal, being part of their journey was one of the best experiences of my life.