I have an app to track bowel movements, something easier to do on a phone than with pen and paper, and helpful when you’re working with doctors to manage ulceritive colitis and crohn’s disease.
It’s gross. And it hurts. But you can also get little reminders about improvements, and why you’re so tired. This number, 9.3 bowel movements/day is an imrovement. It was 17 a few weeks ago, but slowly dropping as medications kick in. 9.3 is still too many, but it’s better.
They come without warning, too. Like, if I have to go, a stopwatch starts for me. I’ve got 30 seconds to 15 minutes to find a bathroom. It’s why I know where they all are just about anywhere I go, and why travel of more than 20 minutes can hurt. It’s not the holding it in. For me, it’s the cramps. Imagine a leg cramp. Now put that into your colon. Add in your anus throbbing. And no matter what you do, until the inflamation stops, it just continues until it ends. The creams and ointments don’t help much, and come with their own complications.
I’ve been in remission for over a decade. I’ve had bouts of illness and injury, even stomach aches, but thankfully not this. I wanted to do improv and comedy for fun since 2006, but I hesitated because of a recurring nightmare, of me being on stage, needing a bathroom, racing to it, but it’s locked. A small secret I’ve kept is that after a UC related hospitalization, I assessed my life. I started up puppets and art because of that moment.
The secret was that after I’d been in remission for two years, I felt like that recurring nightmare wasn’t possible. I went to UCB and Magnet to help me be a better comedy writer, but I felt like that was an option because I was in remission.
Improv, comedy writing, Camp Magnet, are all part of the reason I got PTSD treatment. I didn’t expect that. There’s a chain of choices and coincidences that led me, while there, to finally remember that two awful things happened within weeks of each other, not years.
I don’t know how long this bout will last. The longest for me was 3 years before it got under control. The shortest was 4 weeks. I’m in week 7 right now. I’m in a phase where I’m beating myself up for pushing myself too much the last month, instead of just being grateful I can rest.
I missed my improv show on Monday. I felt awful. I didn’t want to miss shows and have to retake my class again. So I went. There was a ten minute delay on the subway. I got to Penn Station, my intestines cramped, the countdown clock started, I got to the bathroom there, it’s disgusting, there’s one stall open like a miracle, there’s no toilet paper, the seat has someone else’s poop on it, I’m almost out of time, I pull out my wipes, clean it, sit, and literally as I’m sitting out it comes. I’m there for ten minutes, people are banging on the stall door, and I’m getting chills and shivering. This means I’ve lost slightly too much blood. It’s over, and I have a choice. Go to Magnet, it’s ten minutes away. Go home, it’s 40 minutes.
I go home. There’s weird train delays that bypass me, and so I get lucky, a 30 minute ride. Just as I walk in to my place, a cramp. The twinge tells me that I’m on a 30 second or less timer. I get to the bathroom. I spend the next theee hours randomly racing to the bathroom before I go to sleep.
UC may shorten my life. The more of these flares I have, the greater the chance of colon cancer. But UC has also saved my life, and created random timing of things. I was rejected for military service in 2001 and 2002 because of UC. Thank god for that. UC led me to a hospital bed after a severe bleed out, which got me to puppets, which got me to UCB and Magnet, which got me to PTSD therapy – and also learning the overlap between UC patients and trauma.
I don’t wish this on anyone. But for my life, I accept this part of it. And I’m ashamed no more.