Reflections on 2 Years of Pooping Out of my Stomach
Two years ago today, a surgeon was using a state of the art robot to remove five inches of my rectum, including a massive rectal tumor. I woke up that night to find out that my medical team successfully removed that tumor, but were unable to remove the tumors in my liver. I found out I was returning to chemotherapy for life, that I was unlikely to survive two years (gotcha), and as heavy as those things are to hear and process, I was least prepared to live with the little piece of intestines dangling out of my stomach. I woke up with an ileostomy.
Someone had stuck a clear plastic bag to my stomach, and I looked down to see I had been uncontrollably pooping and farting into it. I found myself quickly trying to process my new reality. How am I going to handle spending these next two years (if I make it that long) with a bag of poop on my stomach and constant chemotherapy? I may have been able to access a medical team that could use an expensive robot to remove my tumor and I could recover well enough to go home in just two days, but I could not access any medical professional who could tell me how to wake up everyday and live with my new, stomach pooping reality.
I knew going into the surgery that I might wake up with a poop bag, so I did as much as I could to prepare. Many ostomates won’t honestly tell you this, but I was utterly disgusted and terrified. I looked on social media for people living with ostomies, and I was grossed out. I did not want to be like them. I joined patient groups about ostomies and asked for advice on how to prepare and accept living with one.
I found loads of support groups for ostomates with other intestinal conditions like colitis or Crohn’s disease, and saw posts from them about how getting an ostomy saved or greatly improved their lives. They were grateful for theirs and could return to a somewhat “normal” life. I immediately felt like I did not fit in because I’m dying. I am a bummer. I don’t have an ostomy story that ends with me getting better and living my best life. Mine will be a slow progression towards death. Death and poop both carry huge stigmas in this society, even in the cancer and chronic disease space. People don’t want stories about dying girls who poop in a bag.
I searched and searched online, and someone finally referred me to an online patient community called Colontown. Colontown is a secret network of over 100 facebook groups where colorectal cancer patients and care partners share their stories and educate each other. They have a community for people with ostomies.
I started posting there about my anxiety over having a bag, and at first received comments from other patients with ostomies telling me to get over it, there is nothing I can do and it is saving my life. I often found married women telling me I would find someone too (get real, no one wants to date a dying pooping girl). People kept telling me I should name mine. I never wanted to do that, possibly because that made it seem more real. However, I will say the best stoma name that I have ever heard is Stomie Daniels. It is perfect! Like Stormy, she is very expensive, there’s a stigma attached to her line of work, and nothing, not even a non-disclosure agreement, can keep her from talking.
Eventually I found a woman slightly ahead of me in the process, and she shared videos that taught me how bags work. She seemed to be happily living with hers, and it made me feel better. She didn’t shame me for being worried or for feeling vain. I followed her story and learned as much as I could.
I was still sad when I woke up. It took a whole day for the hospital to send an ostomy nurse to see me, so my first few bag changes were done by nurses without me knowing what was going on. When the nurse finally came to see me, we went into the bathroom to finally change my bag. As soon as we removed it, electric green liquid poop started shooting out of my cute little intestines and squirted across the room. My mom and I both looked at each other with terror.
Suddenly, I remembered the videos from Colontown. I grabbed a wafer (the sticker that holds the poop bag to the stomach), slapped it on and put my own bag on. I‘ve never let someone change my bag for me since. The ostomy nurse commented “Wow, are they offering patient education classes now?” I laughed and said no, no one on my team taught me anything about this. I learned this in the patient community.
After working through the technical aspects of poop bags, I again turned to Colontown to find inspiration on living with it. I would oftentimes be jealous of the people who got theirs reversed, but found they faced their own challenges as well. I would see people posting pictures with their bags out, wearing them in public. I didn’t like it. It made me uncomfortable and I could never imagine myself doing it.
I spent a few months being ashamed, buying new clothes to hide it, and making excuses for my uncontrollable farts, but eventually something broke in me, and I wore my ostomy out to see the cherry blossoms at the National Mall with my mom. I think after a year or two of straight chemotherapy, one simply becomes way too tired to make apologies about bodies. A few weeks later, I wore it out on the beach while visiting a friend in San Diego. I walked around Comicon with a cute little unicorn cover on my bag. No one really seemed to care.
Do I always feel like walking around with my ostomy out, educating others on the disease? Hell no. I am still grossed out by it. Sometimes I look down and poop is leaking out of the side of it. It is gross. It is me though, and I have to live with it. I am not one of those people who will tell you everything is great, and I am cherishing every second I have left on this Earth. I am very pissed that at age 31 I was diagnosed with this disease, and I am very pissed that I am dying and that I am alone. Having limited time left doesn’t change that for me. I don’t like when people tell me I should be grateful. When I do feel grateful, I embrace it. When I am pissed, I embrace that too.
Accepting the changes cancer forces on you is a constant process of grieving. Over the last two years, I have grieved and let go of so many Violets. The Violet who poops out of her butt. The Violet who might get married and have kids. The Violet who has a successful career. The Violet with a sexy six pack. I miss all of those Violets. They are dead though, and there is nothing this Violet can do about it. That doesn’t mean she is always happy to bloom where she is planted though. Acceptance is hard, and a process that takes constant work. Violets tend to keep growing whether they want to or not, and that is true for this one. Unless I’m unexpectedly uprooted, I have to wake up and live with this daily.
Today, I am happy to be sitting here doing chemotherapy and pooping into a bag. I’ve lived longer than I ever expected to, while also losing nearly every aspect of my identity. I often feel like an elderly infant, an old woman who was just born. As such, I feel entitled to poop wherever I want, cry whenever I want, and tell stories about my poop whenever I want. I’m glad I’m here today to tell you I am pooping right now, but I also ask that you hug me when I cry about it later. If you’re facing an ostomy, don’t let anyone make you feel bad for being embarrassed, ashamed or ungrateful. I’m not grateful for mine.