I don’t have an ostomy story that ends with me getting better and living my best life

Reflections on two years of pooping out of my stomach.
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Two years ago today, my 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 my medical team had successfully removed that tumor, but were unable to remove the tumors in my liver. I also found out I would be on chemotherapy (for life) and only likely to live two more years (alrighty then). As heavy as those things are to hear and process, the thing I was least prepared to deal with was a little piece of intestine dangling out of my stomach. I woke up with an ileostomy.

Someone had stuck a clear ostomy bag to my stomach, and I looked down to see that I'd been uncontrollably pooping and farting into it. It was hard 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? Sure, I was able to access a medical team that removed my tumor and I could recover well enough to go home in just two days, but there weren't any medical professionals who could tell me how to wake up every day and live with my new, stomach pooping, reality.

Going into surgery, I knew I might wake up with a poop bag, so I did as much as I could to prepare. Many won’t honestly tell you this, but I was utterly disgusted and terrified. I looked on social media for people living with an ostomy — I was grossed out. I didn't want to be like them. I joined a few support groups for ostomates and asked for advice on how to prepare and accept living with one. I found loads of support for patients with other types of intestinal conditions, like ulcerative colitis or Crohn’s disease, and read posts about how surgery greatly improved their lives. They were thankful for theirs and could return to a somewhat “normal” life. I immediately felt like I did not fit in . . . because I’m dying. I'm a bummer. I don’t have an ostomy story that ends with me getting better and living my best life. Mine is a slow progression toward death. Death and poop both carry huge stigmas in this society, even in the cancer and chronic disease space. People don’t "like" stories about dying girls who poop in a bag.

Someone referred me to Colontown on Facebook. This is not your typical online support group, it’s made up of over 40 "neighborhoods" dedicated to specific diagnoses and patient needs. I found Stoma City, so I started posting there about my anxiety over having a bag. At first, I received comments from other ostomates telling me to get over it, there is nothing I can do, and it's saving my life. I even had married women telling me I would "find someone" (get real, nobody wants to date a dying stomach pooping girl). Eventually, I connected with 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. 

Btw, some ostomates keep telling me I should name my stoma. I never want to do that, possibly because that makes it seem more real. However, I will say the best name I've heard is Stomie Daniels. It's perfect! Like Stormy, 1) she is very expensive, 2) there’s a stigma attached to her line of work, and 3) nothing, not even a non-disclosure agreement, can keep her from talking!

My first few bag changes were done by nurses without me knowing what was going on. One time it took an entire day for the hospital to send someone to help me. When the nurse finally came to my room, we went into the bathroom and changed my bag. As soon as we removed it, electric green liquid poop started shooting out of my cute little stoma and squirted across the room. My mom and I both looked at each other in sheer terror. But then I remembered the videos from Colontown. I grabbed a wafer (it's the adhesive part that holds the poop bag to my stomach) and slapped it on. I put my own bag on! I‘ve never let anyone change it for me since. The nurse said, “Wow, are they offering ostomy education classes here now?” I laughed, "No, nobody on my medical team taught me about poop bags. I learned this from Colontown."

After working through the technical aspects of an ileostomy, I again turned to Colontown to find inspiration on living with it. I'd oftentimes be jealous of the people who got theirs reversed, but found they faced their own challenges. I would see people posting pictures wearing their bags out in public. I didn’t like it. It made me uncomfortable and never imagined myself doing that. I spent a few months being ashamed, buying new clothes to hide it, and making excuses for my uncontrollable stoma farts. But eventually something broke in me, and I wore my bag out for all to see while visiting the National Mall with my mom. I think after a year or two of chemotherapy, one simply stops giving a crap what others say or think about looks. 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 pouch cover. No one really seemed to care.

Do I always feel like walking around with my ostomy bag out or educating others on colorectal cancer? Hell no. I am still grossed out by it. Sometimes I look down and poop is leaking out the side, gross. It's me though, and I have to live with it. I am not one of those people who will tell you everything is great. I'm pissed that at age 31 I was diagnosed with cancer, and I am very pissed that I'm dying. 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 much of me; the Violet who poops out of her butt, the Violet who will get married and have kids, the Violet who has a successful career, the Violet with a sexy six-pack. I miss all of those Violet's. They're dead though, and there is nothing this Violet can do about it. That doesn’t mean she's always happy to bloom where she is planted though. Acceptance is a hard process that takes constant work. Violets tend to keep growing whether they want to or not, and that's true for this one too. Unless I’m unexpectedly uprooted, I have to wake up and live with this reality daily.

Today, I am happy to be sitting here on 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 RANT about whatever I want. If you’re facing ostomy surgery, don’t let anyone make you feel bad for being embarrassed, ashamed, or ungrateful. I’m not grateful for mine.

Article credit: Crazy Cancer Cat Lady