I am standing in a voiceover booth having just finished what is meant to be our final take of the script. The client in Canada has signed off the phone patch and I am waiting for the producer to give me the signal from the other side of the glass that we are finished. I stick my hand down my pants for a routine check, and something feels wrong. Very very wrong. There is a much larger bulge of intestine than I am used to feeling. My chest tightens, sweating increases and I need to get out of this booth, STAT. The producer, who is very kind and very chatty, says we are done but continues the chit chat. He wants to know what I am doing for the upcoming holiday, wants to take a photo in the booth together. I don’t want to be rude, so I oblige. Fakest, fake smile ever smiled. Like Woody Allen at the agent’s office in Annie Hall fake.
The longest five minutes later, I am hiding in the stairwell of an office building at 5:30PM on a Thursday night in the flatiron district of Manhattan, pulling my pants down to try and see what’s going on. The bathroom is locked and I can’t risk going back to the chatty producer to ask for a key. There are many types of ostomy bags; see-through, opaque and some opaque with this little peekaboo window which allows you to check on things to make sure all is still cool and collected down there. Lucky for me I am wearing a bag with one of these peekaboo windows and I manage to hunch over and peek while trying to cover myself with my jacket. I see what I hope you never ever see. When I lift the window to peak at my stoma, which is normally the size of a donut hole, I see about 2 feet of my intestine erupting out of my body. It is thick and pulsing and hanging down near my hip bone. It looks alive and confused, twisting and turning and filling every corner of the bag trying to contain it.
I freak the F@$*! out. I miraculously have my surgeon’s cell phone number, contraband I got from another of his patients, I call him, barely able to talk. He says to calm down and take a photo. Now I am standing with my pants down at 5:38PM on a Thursday in the stairwell of an office building in Manhattan trying to take a photo of my intestine that has quite literally fallen out of my body. He then says he can’t really see what’s going on from the picture and I can go to the ER “if I want to.”
I text my husband, Doug things like “Emergency” and “SOS” and “meet me at the ER.” He is on the subway, so that must be fun for him. I steal a cab from a pissed lady in a suit who mumbles “screw you,” under her breath. Normally I might have reacted to this, I was born and raised in Brooklyn after all, but I am afraid if I speak louder than a whisper, what’s left of my insides will be at my knees.
It might be too soon to go back to work. That was my first thought when I got an email from my agent that I had booked this job. I auditioned because “what are the chances.” Plus, I could do the audition at home, in my pajamas and I figure it might be nice to feel like a productive human and do something other than cry, or watch Vanderpump Rules, at least for five minutes.
I am about a month out from my most recent major surgery. During this particular procedure, the surgeon took a loop of my small intestine, made a hole in the lower right quadrant of my abdomen, pulled that loop of bowel through the hole, sliced an opening in that section of bowel, rolled it inside out, balloon animal style, and stitched that little shit volcano to the outside of my abdomen. This is now where the traffic of everything I put in my mouth will exit my body while my anus is out of business for renovations. The medical community feels that the term “shit volcano” is a bit crass, so they call it a stoma.
Many people name their stoma’s. Rosebud is popular, Meatball, Ted, anything goes. This helps them accept this little volcano of burning acidic feces that erupts willy nilly, whenever it damn well pleases. I have never named any of my four stomas, quite frankly because I didn’t want to accept them. I didn’t want to accept that I, a former professional aerialist and acrobat, was now to live my life as an “Ostomate.” That’s what they call people who have stomas, no longer boy or girl or any pronoun of your choosing, just: Ostomate. Which spell check tells me isn’t even a word.
There are approximately 500,000 Americans that currently live with an ostomy. Even famous people get Ostomies! They’re just like us! Dwight Eisenhower, and Napoleon to name a few. Pictures of Napoleon often show him with his right hand in his shirt in an effort to conceal his ostomy bag which was created out of a goat bladder. Thank goodness medical technology has evolved past goat bladders. I don’t mean to be cavalier or cheeky about all of this, but when life gives you a shit volcano on your stomach, I ease my pain with humor. OK, and Diladuid.
The ER is busy. I sit in the waiting room, crying, shaking and waiting. When Doug arrives, he makes them see me. I can barely tell the nurse what’s going on because I am so panicky, so I just lift the cute little peekaboo window. From over my shoulder I hear my tough, builds steel buildings in the snow and heat for a living, Iron Man racing husband say; “Oh my god.” Even when our intestines are hanging out of our bodies did not come after “in sickness and in health” when we exchanged our vows less than a year ago. No lingerie will help him unsee this.
2 hours, an IV full of valium and some nice doctor’s later I am lying in a rather quite section of the ER accepting my back to surgery fate, when I reach down for a feel and feel nothing. I lift the window. She’s back in. Only my cute little donut hole sized stoma staring back at me like “What?” “What was all the drama for?”
There is a lot they don’t tell you that they know MAY happen after ostomy surgery. Having a “prolapse,” or in laymen’s terms, your intestine falling out of your body, is one of those things. To the docs, it’s no big deal! Unless it turns purple or white, then; problem. To the docs, it’s cool if you walk around with a bulge of intestine hanging about, just as long as it is a good color and still producing “output.” Output is ostomy lingo for shit. I like this term, very sanitary. I think even people whose shit comes out the standard way should start calling it output. “Hey, friend, how are you? How’s the fam? How’s your output lately?” Very civil. Very proper and yet, caring.
When we leave the ER that night, they say the usual; Call if you vomit. Call if you have a fever. Call if your intestine falls out again and turns purple. They also say, sometimes this only happens once, sometimes it happen a few times and sometimes it happens often. Ok, we say, let’s hope I am in the once camp.
Nope. Unfortunately, this happens A LOT over the course of the next 4.5 months. I learn quickly that the only remedy for me that works is to lie down. Flat down. So, I lay down. I lay down in restaurants, I lay down on stoops in Brooklyn, when I have to lay down, I lay the F down. Doug and I spend a lot of time waiting for my intestine to go back inside my body before we can resume whatever we are doing. We cancel plans or are late or have to leave early. Sorry, we can’t make it, Cody’s intestine fell out of her body again. Argh, Sorry! Happy Birthday! Merry Christmas! Congratulation! I also learn what will exacerbate the situation if I am having a prolapse-y day which is most days. Laughing. Crying. yelling. Breathing. talking. AKA being a living human with emotions.
By the time March rolls around and with it, a date for my next surgery, I’ve become robotic. I don’t laugh, cry, yell, talk or breath too deeply. Not really. But, I have become a woman who is working towards accepting and respecting her limitations. I have become a woman who has managed to laugh, cry, yell, talk, breath, live her life despite an unruly intestine that likes to assert her freedom. Most of all, I have become a woman who knows that when you need to lay down, it’s best to lay the F down.
Like this post? View similar content here: On My Own: Growing Through the Failures of My Ostomy