Irritable Bowel Syndrome. Spastic Colon. My large intestine needs to see a shrink. It could use some benzos, or at the very least, Haldol. Maybe a stint in the psych ward. Unfortunately, my colon doesn’t have a separate brain and I can’t take it for psychoanalysis. (I probably wouldn’t want to hear the diagnosis anyway.) Fortunately, my brain (addled and atrophied as it may be) has been able to uncover all the wonders and horrors of dealing with and treating Irritable Bowel Syndrome (IBS).
In 1971, I was born a seemingly healthy, properly-pooping nine-pound baby. But things soon changed. In my terrible twos I was at least easily potty-trained. (You couldn’t get this kid on the toilet fast enough.) I skipped the entire Freudian anal-retentive stage. What was going on? Was it because my mother hadn’t breastfed me? Was it the Ukrainian evil eye from my jealous older siblings? No, proclaimed Dr. Zaber, it’s a sugar allergy. The catch-all digestive diagnosis in those days.
Out went any and all sugar, which only proved to make me a crankier child. Goddamn it, I wanted my candy and I wanted it NOW! Using myself as an experimental group while Dr. Zaber thought I was in her control group, I resorted to stealing my sister’s stash of Halloween candy. Then I raided my mother’s “After Eight” chocolate mints. Soon, this led to desperation: Climbing on a chair and eating an entire bottle of baby aspirin. (Sorry, but it tasted good.) One stomach pumping later, the adults began to catch on that sugar didn’t seem to alter my cramping, diarrhea, bloating, and sometimes severe constipation. To compare the latter to defecating a pine cone is no exaggeration. I was blessed with the worst of both toilet worlds.
Finally, in grade school, after too many incidents of having to leave birthday parties without warning, my father getting speeding tickets from rushing me to a bathroom, and general misery, Children’s Hospital was called in. There I underwent a multitude of tests: Swallowing barium (which turns your poo white), barium enemas, fasting tests, drinking strange fluids, and having my blood drawn every few hours. My arms looked like those of a young Nancy Spungen. I bore this with extreme dignity and extreme bruxing. The results came in: Irritable Bowel Syndrome. More fiber? Metamucil? I was terrified. Dr. White Coat explained that the fiber was to hold my bowel down and build bulk. I tried it. Sometimes it worked, sometimes it didn’t.
I began to have periods of remission, but there was no pattern to the flare-ups. Stressed or not, jacked-up on sugar or not, fiber-loaded or not – no rhyme or reason. So I learned how to live around my IBS. I always knew where every bathroom was everywhere I went. I became an expert at all the secret methods of veiling violent bathroom experiences: The social excuses, the hidden bathroom where no one knows you, and the simultaneous constant flush, to name a few.
The older I got, the more time I had between episodes. But damn, when they hit, they really hit. There’s nothing that makes up for having fewer episodes like suddenly jumping out of a traffic jam in Northwest D.C. while simultaneously unzipping your pants to make it to the filthy gas station toilet on the corner in time. It’s also fun facing dinner dates with severe anxiety and deciding to barely eat in order to avoid any embarrassingly quick exits. Never mind being in a new relationship and fearing a sleepover more than a sighting of the Four Horsemen of the Apocalypse.
IBS doesn’t exactly enrich your love life. It behaves like a stalker slapped with a restraining order; it’ll show up any damn time it pleases because it knows you have no serious protection against it. Still, I threatened it with more colon palpations by med students, colonics, and near-starvation. Didn’t matter: IBS decided to turn a ski weekend away into a threesome. Every time my companion used the bathroom in our cozy winter resort hideaway, I made a break for the hotel lobby bathroom. (I love lobby bathrooms, in condos, hotels, and apartment buildings. Sure, the front desk person may think you’re homeless, but that judgment is well worth the clean, widely available, and anonymous facilities.)
Marriage means in sickness and in health and til death do you part, but does that include IBS? I should have known after a delightful day with my soon-to-be husband in Baltimore – which ended with me bent over with cramps and sweating in a public bathroom – that love can be conditional. My irritated bowel and I left that grimy bathroom to join an equally irritated fiance who possessed annoyingly perfect health and perfect intestines. Stooped over and unknowingly cultivating my dowager’s hump, I limped apologetically behind him ten paces back to the car. Did I get any compassion? No. Did this and other similar scenarios stop me from marrying Mr. Perfect Scat? Of course not! As newlyweds, sharing one bathroom did not expose cute and quirky Hollywood movie scenes of lovers peeing or number two-ing in front of each other while simultaneously engaging in playful banter. The toilet was my soulmate. Ultimately, IBS wasn’t the reason my marriage ended, but romance certainly can take a nosedive if your stomach makes more noises than you in the throes of passion. I’m currently divorced and single, and sometimes I can’t help but think that my IBS helps firmly pigeonhole me in the “party of one” category.
Over the years, a string of procedures to find the right medication followed. There’s nothing more terrifying than being sedated while having an endoscopy mouth guard inserted as your doctor is playing Billy Joel and joking with the staff. My colonoscopy was even less fun. The prep was horrible and grueling, rendering my lower intestines raw. I no longer had “an unremarkable anus” like Anna Nicole Smith. (There went any chances of a career in anal porn.) Still, I forged ahead. Papaya enzyme tablets, Reglan, Bentyl, Lomotil, and slippery elm bark capsules were just some of the treatments I tried. And ah, opiates – wonderful, stomach-calming opiates. But ultimately, these haven’t been the answer for me. To be honest, the things that have helped me the most have been regular exercise, eating less fats (and, of course, sugar), and plain old Imodium. Do I still have to carry baby wipes in my purse just in case? Absolutely. Not surprisingly, thanks to IBS, I have become, well, quite anal about my bathroom habits.
Welcome to our new Blisstree series about living with chronic diseases as your perpetual housemate. (We kicked things off a few weeks back with tales of Hailey-Hailey Disease, a chronic — and very irritating — skin condition, and last week we featured Crohn’s Disease sufferer Simone Edwards.) Each week, in a Q&A or a personal essay, we’ll feature someone who’s living and struggling with a different chronic disease, and how they manage their life navigating such an enormous built-in obstacle. If there’s a specific chronic disease you’d like us to cover, tell us about it in our comments section, below (anonymously, if you like).