So Much Shit by Christy Lorio

               ​Jason Tessier CC



So Much Shit 


If I want to be polite, I tell people that I had an ileostomy bag. If I’m trying to be funny or crass, I tell them I pooped out of my stomach for nine weeks. The general public doesn’t know what an ostomy bag is (there are different kinds) and, prior to having one, I wasn’t really sure either but now I have an intimate, first-person account of it after having my rectum and a cancerous tumor removed. An ostomy is necessary when a person has to expel waste out of a surgically made opening other than the plumbing they were born with. Many people with Crohn’s disease or post-colorectal surgery cancer patients, like me, need them temporarily or permanently. I needed an ileostomy, which connects to the small intestine. The bag collects the waste. It’s a shitty situation. 
   My surgeon told me I wouldn’t need a permanent ileostomy bag, which was great news. I insisted on going to my initial surgery consultation alone. At that point I had been through brain surgery, what would be a little butt tumor removal? My surgeon was just going to go in and remove it and I’ll wake up and be back to normalish, right? 
    I was so, so wrong. 
   The bag was something necessary for me to let my insides heal after I had my rectum removed and rebuilt out of part of my small intestines. The five hour surgery was without incident and went as smoothly as these things can go. I woke up with excruciating pain in my shoulders, a result of being pumped full of air to give the surgeons more room to work around my internal organs. The gas that settled in my shoulders was even more painful than my abdominal incisions. 
    During my pre-surgery consultation the ostomy nurse explained what an ileostomy bag and a stoma was. I wasn’t sure what a stoma was, even while my nurse held the little plastic stoma model in her hands. I was half overwhelmed, half in denial. I didn’t realize I would need a temporary bag prior to this consultation. I thought the hard part— the brain surgery and twelve rounds of chemo, were over. The nurse measured me for my bag. She had me sit and bend, evaluating the natural folds of my stomach in order to decide what the best placement would be— underneath my belly button and slightly to the right. Prior to this, the only time I had someone analyze the curvature of my body like this was for a tattoo, the design complementing a shoulder blade or the generous blank canvas that a thigh provides. Having a body part removed was disconcerting enough, much less rerouting an internal organ to the outside of your body. But I didn’t realize the full extent of it until I got home. The nurses showed me the plastic model of a stoma, which looked like a pink plastic plug. I thought getting an actual plug, a tidy little opening in my stomach. Then I went home, googled “stoma” and realized a piece of intestines would be sitting out of my body. 
    Wait, what?
   The bag almost looked like a whoopee cushion. It’s the color of a bandaid and hangs off the body, collecting waste. After I got the ileostomy I made jokes when Thomas and I walked the dogs. I pointed out that it would be much easier to just grab one of our dog’s poop bags and secure it with a rubber band over my stoma. He asked me if I had poop bags for our walk. “Yes, but what about for the dogs?” would be my response. My sister also just had a baby, which requires so much to just get out the door. Diapers? Check. Baby wipes? Check. Extra bottles? Check. I felt like we had this weird parallel with her baby and my bag. I had to bring an ostomy kit with me everywhere I went. A spare bag, wipes, scissors to custom fit the bag, etc… 


March 2019- You don’t realize how much you use abdominal muscles until you have your abdominal wall sliced into. Standing up just to walk down the hall and back right after surgery felt like an impossible task, not just from the physical pain but from the juxtaposition of my life. The week before I went rollerskating; this week I was barely able to put one socked foot in front the other to stare at the river out the gastrointestinal ward window. I could see joggers and cyclists whizzing down the levee, which made me feel trapped inside my body, trapped inside this hospital. 
   One of the stipulations of me leaving the hospital was learning how to empty and change my bag. It was upsetting seeing an internal organ hanging out of my body. It took two days for me to muster the courage to look at it. The nurses emptied my bag out for me, which made me feel stripped of my humility. My shoulders and abdomen still ached from surgery, and I felt fragile and vulnerable while I watched them empty the contents of the bag out, wipe fecal matter off the opening, then pressing the velcro tabs back in place. I felt bad that they had to literally handle my shit. Two nurses came in to help me care for my stoma. I closed my eyes and winced as I looked at it for the first time. The small, pink nub of my stuck out small intestines looked like a round, quivering tentacle, spewing out fecal matter like an alien which I had no control over. I felt equal parts detachment, horror, and curiosity. I was able to temporarily detach myself from the situation and see this as an interesting insight into the human body until a wave of pain would force me back to the reality at hand. I could do this the easy way— even though there was nothing easy about it— and accept this burden, or do it the hard way and resist it. I had to come to accept what was happening to me if I was going to get through those next nine weeks.
   I found a small online community of other people, almost exclusively women, who took to Instagram to connect to others going through similar situations. Some of them were unbelievably upbeat. I found their attitudes inspiring sometimes but mostly they just really pissed me off. They gave their stomas cutesy names like Meatball and Bob. Look, I get it. They were choosing their attitude, choosing to see the silver lining on the ostomy cloud, but when my bag leaked fecal matter in public, or I woke up to shit soaked sheets at two a.m. I couldn’t do anything but break down and cry.  Instagram captions included, “Thank God for this life saving bag!” And “I love my bag.” It was a little too much. I wanted to shake these women sometimes and ask why they were lying to themselves. Quite frankly, having the bag sucked. Who really wants this damn thing? There was nothing cutesy about it. I found #Freethestoma, a hashtag that got started after the suicide of an eleven year old ostomate that broke down after having been bullied for his bag. Fellow ostomates showed up online, their pink nubs out for the world to see, unencumbered by the bags that catch their output. I didn’t want to go as far as they did, displaying their new buttholes to the world, but I also didn’t shy away from talking about what I was going through, both in person and online.
   I joked about my shitty situation but I didn’t show my new poop portal to anyone except my medical team. I didn’t want my husband to see my stoma. Hell, I didn’t want to see my stoma. Most ostomates have opaque bags but, since I was just using hospital sample bags, mine were clear. I wore a modified belly band to hide the bag and so I wouldn’t have to feel warm fecal matter pressing against my stomach.
   Emptying the bag in public was an exercise in patience and stress management. One of the first times I had to empty the bag in public ended in utter humiliation. I was at a restaurant with my husband and made the grave mistake of trying a new tactic to empty the bag. “Just sit on the toilet like normal and empty it in between your legs,” the ostomy nurse instructed when I was still in the hospital. Prior to this moment, I had a different approach: stand facing the toilet, squat down, and dump it out. I must have been feeling adventurous to try to change up my tactic and was horrified when I released the plastic velcro tabs, unrolled the plastic opening, and missed the toilet completely. Shit spewed onto my underwear and the biker shorts I had on underneath my dress. I was horrified. I tried not to panic and see the upside in the situation. At least I was wearing a dress, so going commando was an option. At least I didn’t have to walk out the restaurant in shit stained shorts? I tossed my underwear and shorts in the tampon receptacle in the stall and walked out to the dining room, visibly shaken by the experience. I started to cry, apologizing to my husband for ruining the upbeat mood we were in just a few minutes earlier. 
    “Sorry I ruined our dinner.”
    “You didn’t ruin anything.”
    I didn’t want to leave a shitty surprise for the poor waitstaff at the end of the night, so I asked for two plastic bags, went back into the bathroom, fished the offending articles of clothing out of the trash, brought them home, and washed them about six times. 
    Emptying my bag in public wasn’t the only inconvenience when dining out. You don’t realize how unaware you are of chewing your food until you have to start paying attention. “Most people don’t chew their food well enough,” my ostomy nurse explained, hence why you get a laundry list of foods you can’t eat when you have a stoma, and yet “People with permanent ostomies eat whatever they want,” she explained. People with permanent ostomies get used to chewing their food well, whereas newbies aren’t as in tune with their eating habits. The trick is pulverizing almonds, machinating the food into a paste so you don’t give yourself a blockage later. It’s one more thing most healthy adults have the luxury of not having to think about. Having to slowly chew, chew, and chew some more wasn’t all bad; how many of us wolf down our food in a rush, or mindlessly snack in front of a computer screen? Taking the extra time to chew helped me savor my food and be a more mindful eater.
    Certain foods produced foul smells, which were fortunately not detectable when the bag was closed and tucked away. Gas producing foods weren’t off limits but they resulted in the bag inflating like a balloon, I had to “burp” my bag frequently, otherwise I risked it exploding under the pressure. If I had a beer (or anything else gas producing) too close to bedtime I would wake up with a bulge; it looked like I was smuggling a water balloon in my pants. I heard horror stories of bags bursting under the pressure, but fortunately that was one disaster that I managed to bypass. I could have reduced the risk of an exploding bag even more by abstaining from beer but damn it, I deserved a drink. 

    I had grown used to having some dietary restrictions after chemo, such as not eating undercooked meat and fish due to risk of infection; goodbye sushi, sayonara medium rare steak. Buffets were off limits during chemo (not the worst thing tbh) but as soon as I finished treatment I was enjoying eating whatever the hell I wanted; now I had to consider even more dietary changes. Seeds, sausage casings, nuts, and fibrous vegetables were all off-limits.
    I had been eating sushi at my campus’s coffeeshop one day when I realized my rolls were coated in sesame seeds. Would I combust? No, but I pooped sesame seeds out of my stoma and it was gross and strangely fascinating to watch— a peek inside the human digestive system, not unlike dissecting owl pellets in middle school science class. 
    Throughout the process I became more attuned to my body. What I ate in the morning would come down the pipeline eight to twelve hours later. It was an anatomy lesson and an exercise in humility; when things with the bag went awry, which they frequently did, it was inconvenient and messy at best, totally humiliating at worst. I tried to handle it with as much grace as I could muster but there were times when I sat in the bathroom and cried after a leak so bad that it warranted a shower at three a.m.
     I had to remind myself that I am an intelligent, well-rounded human being with two college degrees and working on a third. I made it through multiple surgeries, chemo, and radiation. There were lots of people worse off than I was. This was only temporary, a blip on my cancer timeline. At least I didn’t have cancer anymore, right? No, fuck that. This sucks. Everything about this sucks. I didn’t want to hear “At least you’re alive,” from my own internal dialogue or anyone else. I didn’t want to deal with part of my intestines pushing shit into a plastic bag. I didn’t realize how lucky I was to use my own plumbing before. Cancer teaches you how to take nothing for granted.

    I read The Wounded Storyteller by Arthur Frank, a Professor Emeritus of Sociology at The University of Calgary. I wanted to gain perspective on my cancer experience. Frank explains that society allows contingency for the infant body; it’s expected that infants have little to no control over bodily functions such as burping, spitting and defecating. Yet “when adult bodies lose control, they are expected to attempt to regain it if possible, and if not then at least to conceal the loss as effectively as possible.” Frank goes on to note that stigma “is embarrassing, not just for the stigmatized person but for those who are confronted with the stigma and have to react to it.” So let me get this straight; not only do I have to worry about embarrassing myself but I’m also supposed to avoid making other people feel uncomfortable? Screw that, I’m the one with ass cancer. 
    
May 2019— When I woke up from my ileostomy reversal surgery I was in minimal pain. The surgery hooked my small intestines back up and my surgeon sewed up the layers of my abdominal wall to close the hole where the stoma once was. I was uncomfortable but not horrendously so like the surgery that removed my tumor and my rectum. A gauze pad and medical tape covered the hole my stoma once occupied, which looked like a relaxed cat butt that would heal and scar over in the next few weeks to form a purple scar below my navel, the only indication of what was once there. I thought about getting a tattoo over the area to cover the scar but I chose to see it as a source of pride. Besides, there is a divot where the hole was, imperceptible to anyone but me. It doesn’t bother me and it could have been much worse; I could have been gutted up and down like a fish.
    The blessing and curse of reversal surgery is that it’s invisible. No one is going to know that you’re still healing, that you’re still hurting. No one is going to know that every time you have to poop it feels like you are collecting rocks inside your rear end. The healing process varies wildly from person to person and, to be honest, there’s a lot of humiliating moments that can come with it so there’s a real want for that invisibility, to minimize embarrassment. Sometimes it would take (and still does) multiple trips to the bathroom to finish making #2.  I quickly realized that I wouldn’t have to worry about shitting myself in public (thank god) but I was often in crippling pain, even months after surgery. 
    
    Just three weeks after my rectum takedown, my husband broke his elbow after a bad accident while riding our Vespa. It was a nasty break. “I think he left a piece of bone on the road,” the surgeon told me after Thomas’s second surgery. I was still adjusting to my ileostomy bag when Thomas was getting nerve blocks and walking around in a sling for several weeks. When we were out in public together I noticed the way people reacted to him. Some people ignored him, others asked what happened out of sympathy. The thing with cancer is this: people don’t react to you because they don’t want to be rude, which is a good thing. The only visible indicator that I had cancer is when my hair fell out. When my hair started growing back but I was still dealing with cancer I was invisible. Now that my hair was back, I could walk around in public and no one would know that I had my rectum removed and my new stomach butthole was pooping uncontrollably as I exchanged casual banter with the grocery store cashier. I couldn’t express that maybe I also wanted a little sympathy sometimes without coming across as oversharing. No one knew I had to wear the damn bag. Unlike a cast, there was no visible evidence of what I had endured. I was happy the bag was discreet yet I also felt as if I was harboring a secret. 


    I was at my brother-in-law’s 50th birthday party. I was just three weeks post-surgery and my body was still healing. I was in a lot of pain, still figuring out the cocktail of pain pills, stool softeners and laxatives to take. I was in so much pain after my body digested that morning’s breakfast. Sharp shooting sensations coursed through my new plumbing. I tried to mask the pain I was feeling and carry on conversations with other guests like normal. I thought I would have to leave the party early but the pain eventually subsided; I only felt comfortable telling a handful of people what I was going through in that moment. Later on, as the evening was winding down, I joined a friend in the living room. She was talking to some friends and the topic shifted to the nuances of New Orleans accents and pronunciations. I was trying to express how I default to pronouncing certain words a certain way since I’m from the West Bank, a suburb of New Orleans. At least that’s what I was trying to say before she interrupted and told her friends that I had brain surgery. Their mouths dropped. 
    “But that’s okay, she’s fine now.”
    “I don’t have cancer now but no, I’m not fine,” I said and quickly changed the subject.
    I could have slapped her. I make light of my brain and butt cancer all the time. I couldn’t tell if she was going for shock value, trying to be funny, or looking for an ice breaker but it wasn’t her story to tell. I went from being just another party guest enjoying myself to being singled out for having cancer. And, just two hours ago, I was not fine. I was in serious pain but I didn’t want to talk about it. In that moment I just wanted to another guest at the party. 
    A few weeks after that party, my husband and I went to Mississippi with the dogs one weekend for a much needed quick getaway. I had taken a new laxative and took too much of it, to the point where I had to go to the bathroom no less than six times during lunch one afternoon. I just hoped that our waitress didn’t notice. It was embarrassing and I was frustrated that I was souring our lunch with my bathroom trips. I didn’t want my husband worrying about me but I was also in pain.
 
July 2019— I posted a picture of myself, pulling my shirt up and my skirt was down just enough for the scar where my ileostomy once was to be visible. I did it to show others that this had been my reality, the only visible proof that I had an ostomy bag, as well as to do my part in destigmatizing having one. A friend of mine, who reached out to me in private as she was going through her own bout of butt cancer, emailed me.
    “Seeing your post today flaunting your scar=goals. You’re awesome. I’m desperately looking forward to those days!”
    I hardly felt like I was flaunting the scar, more just presenting it for public consumption. It wasn’t a close up shot, either. It was full body, as if to say this scar does not define me. I am still me. 

                                                                                                                                      ***

    I had a dream where a woman was making people take laxatives as a form or torture and to make sure they weren’t working as a drug mule. In the dream I felt scared but also partially immune. I had been through cancer. What could possibly be scarier than that? I suppose this meant that my suffering has given me some kind of upper hand in life, like I’m better equipped to handle physical and mental anguish now that I’ve been through this. Nothing could be more torturous than all that I had been through. 

                                                                                                                                       ***
I’m in New Orleans,  back at the doctor’s office waiting for the doctor to come in and snake my pipes with the sigmoid scope. I have to have a sigmoidoscopy once every three months for the next two years. The sigmoid is a specific part of the colon. The doctor wants to look up my butt, much like a colonoscopy, but it doesn’t go up as far and I don’t get knocked out for it.
     I bought an art print off Etsy that reminds me of my new normal. It’s a woman with her pants at her ankles, bare ass in the air with an audience of physicians, nurses, photographers, etc… and text that says, “Rectal Cancer Be Like.” It’s funny because it’s accurate; I’ve had more cameras up my butt than most porn stars.
    As I continue waiting for the doctor to come in, I glance at a poster of the human gastrointestinal tract. I stare at it hard every time I come in, trying to remember the names of body parts that most people forget after high school biology. I previously thought the Wall of Jejunum was a key geographical component in Game of Thrones. Didn’t the White Walkers destroy it in the final season? I imagine cancer cells invading my body not unlike the White Walkers breaching the wall in order to take over the North. They’re trying to take down everything in their way, breaking through the wall of my rectum, sailing wooden ships through my lymph nodes to land in my brain and now my lungs. Maybe (spoiler alert) after nearly everyone dies in the final episode, I’ll be able to start anew as well. In the meantime, chemo sends out its own armies yet again to attack these shit heads that spread to my lungs. After all I had been through the cancer popped back up again just as I was adjusting to my new normal. At least I got my poop proclivities down; I got a bidet attachment for my toilet, I went to pelvic floor therapy sessions to strengthen my muscles down there, and I started taking fiber supplements at the recommendation of my doctor, which have all helped with a problem that Amazon reviewer Gorn so eloquently described in his description of fiber pills:
     We're not talking about diarrhea here. Diarrhea is nasty stuff  but at least it's easy to clean.     
    What we're talking about is more like pushing toothpaste through a straw or squeezing tar out of a baloon [sic]. The real problem, if I have not yet been sufficiently graphic, is that cleanup is a nightmare. 
     All of this has been a nightmare, but at least my problems are manageable. I don’t have to worry about shitting on myself, which was one of my greatest fears after my ileostomy reversal. There was a video circulating on Twitter of a man caught on surveillance cameras shitting  on himself in a shopping mall. The quality of the video obscures the man’s face but there is no mistaking what happens; one man wearing white shorts walks past a luggage display and has explosive diarrhea, soiling his pants and smearing the floor. As soon as he exits the frame another man rides up the elevator, doesn’t see the feces and slips and falls, knocking over the luggage. The footage of this man is out there for eternity, for future love interests or bosses to find. I’ll admit that part of me laughed, but I also couldn’t help but feel sorry for both parties involved. It’s one of those videos that is equal parts hilarious and disgusting; we watch content on our phones in pure disgust, shaming both parties by firing off tweets and Facebook messages. When I saw it my immediate reaction was “Thank god that wasn’t me” followed by anger at the people that shamed this man online. Give him a little grace. Give me a little grace. 

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Christy Lorio is a writer and photographer. She is currently making work about living with stage IV colorectal cancer. Her essays have been published in Had, Scrawl Place, Nurture Literary, and Entropy, among other places. She was a 2021 fellow for Arizona State University's Desert Nights, Rising Stars Writers Conference. She frequently contributes to Ochsner Healthcare's blog and is currently working on her MFA in Studio Art from The University of New Orleans, where she also received her MFA in Creative Writing.

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