Living with an Ostomy: A Conversation with Amy Hart

Written by Julie Woon, MSJ

Amy Hart is a colon cancer survivor, mother of two, and advocate who lives with an ostomy bag. In this conversation, she shares her journey of resilience, body image, identity, and her mission to break the stigma surrounding ostomies.

Can you tell us about your journey leading up to getting your ostomy?

Amy: “I'm a mom of two, and my youngest was 18 months old when I started having symptoms of colorectal cancer. Because colorectal cancer and uterine cancer run in my family, I was very proactive about getting screened. I was seeking answers before I even fully understood that my symptoms were related to colon cancer.

As my acute symptoms set in, I really pressured my doctors to get me a colonoscopy. It took some doing, but when I finally got one, they found that I had stage three colorectal cancer. I kind of credit my "don't take no for an answer" attitude and continuing to advocate for myself—being a bit of a B-word for lack of a better term—with saving my life.

After my initial treatment of radiation and chemotherapy, doctors told me during the staging process that I'd likely have an ostomy. So I started wrapping my head around the idea that come March of 2020, I'd have surgery and live with an ostomy for the rest of my life.”

How did you prepare yourself mentally for this change?

“I went on social media to seek other people who looked like me, who had an ostomy and were living with one. And finding those people changed my whole mindset about the possibilities that were in front of me. It changed the idea that only old people who are in hospital beds have ostomies. It just opened my eyes to a whole new world and helped me understand the power of sharing your story.

My life before cancer…I was a working mom of two, very busy, didn't have time for this kind of stuff. So I always speak to women who are feeling something in their bodies: Listen to that, because that saved my life.”

What were some of the biggest adjustments between life before and after?

“It's a massive adjustment. Anyone who has an ostomy or has gone through abdominal surgery of any kind can speak to that—recovery from surgery is a bear. I'm honest with people about this: you're not going to sail right through it.

I remember changing my ostomy bag for the first time, and my hands were literally shaking. I had to lay on my back. I think about it now as I'm standing there—I jokingly refer to myself as the animal house of having an ostomy. I have stuff in my mouth, I'm holding things while I'm ripping my bag off and throwing trash bags into my trash can, because it becomes so much a part of your everyday life.

But I think just getting up and doing it and facing it—a lot of mirror work, looking at it, knowing that you're okay, radical acceptance, and then physically moving your body—that really helped me adjust. For me, it was dancing in front of my camera and taking silly little videos that got me feeling like myself again. Those little adjustments and just getting up every day and doing them, suddenly it becomes your normal.”

Has having an ostomy affected your work, travel, or social activities?

“Absolutely, but it doesn't make anything impossible. It's just something I have to think about. And if I'm prepared, it's really no big deal. The situations that I find myself in are self-inflicted a lot of times, where I didn't have my supplies with me or I didn't plan ahead.

For travel, the big difference is when you go through the body scanner—it will pick up your ostomy bag nine times out of ten. I let the TSA agent know right as I'm going in, "Hey, I have an ostomy." I keep it really low-key. They know exactly what that is, and they're well-trained. Usually, that involves a slight pat down and checking your hands with a bomb swab just for safety.

I work a regular job now where I'm a traveling salesperson, and I work in an office half of the day at a desk. I'm prepared for my day and have my supplies with me. I was worried about going back to work, but it's really just become part of my regular everyday life.

And with my kids—Delilah's eight and Simone's twelve—I'm up in the climbing tubes at the air park with them. There's not a minute of not doing the mom thing around here. I never want to give somebody the idea that you're going to be the person you were before, but I'm a new version of myself. I do all of the things that I want to do, but I do have to prepare for my day.”

What are some misconceptions about ostomies that you wish people better understood?

“I think a big reason I share on my platform is because I had those misconceptions when I was first diagnosed. I couldn't picture a mom of two who might be jumping into the pool as somebody with an ostomy. So I think just showing up and showing people that everyday people have ostomies is important. You could be standing next to somebody who has an ostomy and you'd never know it.

I want people to see that there are people in your everyday life who have this. They're very normal. Your life is worth living. Don't give up if this is where your path has led. I know nobody dreams as a little kid of having an ostomy, but if this is where your path has led, there's hope and there's normalcy—there's annoying, regular life beyond this major surgery.

Also, the misconception that you're going to be an inspiration to everyone every day. You're going to have a bad day. You're going to have leaks, and anyone you see sharing their life online has leaks, has moments of "why me," has times where they struggle with what they're going through. That's why I like to show kinds of those ups and downs. It's not always pretty and shiny and well posed, but that is the reality—not just life as an ostomate, but life in general.”

How has having an ostomy impacted your identity and relationship with your body?

“To say that you could go through a surgery of any kind, let alone an ostomy surgery, and not have your body image impacted would be a myth. Not even the strongest, most confident person could go through that without having to deal with your body being forever scarred, quite literally, and having to carry a reminder—a physical reminder—of some of the worst pain you went through.

It took me going to those depths of feeling really low about it to get to the other side. I think that's the best thing I can tell people: dark night of the soul, you gotta ride through that and get to the other side. When you let yourself feel those feelings and understand that any human would feel this way, all of a sudden, it feels lighter, it feels easier, it feels less like you're shaming and judging yourself for having those feelings in the first place.

But to be completely candid, it's a lifelong process of acceptance with this. How it impacted my body image in the first two years was that I felt like I went through that really low time, and then I saw myself in this whole new light. I reflected on how hard I was on myself when I didn't need to be.

That's part of what I share now: don't let it take something so drastic in your life before you start being kinder to yourself, because you're just in a vessel. You didn't pick it. None of us do. You're more than your body. That changed my relationship to how I treated myself, how I saw myself, how I carried myself in the world, how I interacted with other people.

I wouldn't suggest anyone get an ostomy to feel confident about themselves, but that's where my journey has led me—to feeling more confident because I'm more detached from the idea that I am my body or my body is me.”

Do you think ostomates are well represented in media or health conversations?

“I think it's getting better. I see more representation every day, though I know I'm kind of flooded with that content because I'm in those spaces. I'd love to see it on a broader level—more positive representations of ostomates in media and entertainment.

A lot of times, when somebody references an ostomy on a TV show or movie, it's in reference to it being a devastating moment in someone's life. I can understand the concept of it being partially devastating, but I'd love to see that rounded out with the other side of the story, so we can see that positive aspect represented.

More models in our advertisements, more conversations, more spaces for us. Even in our healthcare community and cancer community, we need more for ostomates. We need those safe spaces because we aren't just old and we aren't just young—we're everywhere in between. There's kids who deal with this, so people creating content and providing good visual representation of ostomates is powerful for children who are growing up with an ostomy bag, whether it's temporary or permanent.

I'll never be satisfied. We'll always want a few more ostomates in the project.”

Where have you connected with other people on this journey?

“Originally, I was Googling things because at the time when I got diagnosed in 2019, Google was still the prevailing search engine. But pick your platform. If you're most comfortable on Facebook, there are Facebook groups. Instagram has tons of people—pick somebody who speaks to you, follow them quietly, send them a message, and read their content.

There are people on TikTok doing fashion and humor. There's people who write blogs and do amazing YouTube tutorials that are extended, where you can watch them do a whole bag change. If this is on your docket and you're about to have an ostomy surgery and you want to see what it looks like before you have it, so you can prepare, those resources are there for you on truly every platform.

Primarily, Instagram and TikTok are where I'm hanging out.”

Amy not only is very active on social media, but she also focuses on sharing her real-life experiences and providing advice to others in her blog. One example is her article about how to stand up in the business world when facing stigmas surrounding ostomies. You can read her blog by clicking here

How would you like to see society's view and support of people living with ostomies change?

“I think we're trending in a great way on understanding people with disabilities on a greater level, having conversations about it, realizing that more and more people need these outlets. I never want to scare anyone, but you could become disabled at any point in your life. That is truly not up to you. Things happen to people who are Olympic athletes, even.

So just having grace for people who have disabilities, bringing them into the conversations, into the spaces of decision-making, especially in patient-centric spaces, and giving them opportunities to connect with each other—I think that is such a powerful aspect.

Seeing other people do this and becoming friends with them and becoming true lifelong friends through a connection on Instagram back when I didn't even have my bag yet—I've seen it real time in my life, and that's why I really want to be a part of it at this point.”

Is there a mantra or mindset that has helped you embrace life with an ostomy?

“I have a lot of them. A lot of times I say, "I didn't die and now it's everybody's problem." But maybe more apt for having an ostomy is: shit happens, man. What am I gonna do? Sit around and cry about it forever? I gotta get up and live. I've got the body I have. I've got an opportunity with my ostomy.”

How has this experience changed you?

“I think my sense of humor has expanded, and I let go of a lot of taboos that might have been keeping me a little uptight in life. So I think it's just broadened my horizons in every way—in humor, in friendship, in just empathy.

I hate to say that it's like the best worst thing that's ever happened to me, having cancer and getting my ostomy, because it's really just helped me settle into who I am, big time.”

What does confidence and self-love look like for you now?

“A couple of  years ago, I went back to work after my surgery and being at home for a while. So that confidence was like, okay, I'm going to get up and go have a job. And that sounds kind of normal and low-key, but it was a big deal for me.

Now that I've done that for three years, I think the confidence is just knowing I can keep pursuing more. I have the opportunity to do more, to keep sharing my story. Not getting the imposter syndrome of like, "I should just be thankful my stuff went well." No, we need the positive stories in our group.

That, for me right now, is the confidence I'm working on—I have confidence with my bag, I feel good in my body. Now I want to just share that confidently with the world so that if people are at the very beginning of their process, they know that that's possible.”

What would you tell somebody who just found out they need an ostomy?

“I'd say this is nuts and that's fair to feel. I felt like I got smacked by a freight train. And I'll be completely honest and candid with you—I felt like the ostomy news hit me harder and was worse than hearing I had cancer. I don't know why that is; I'm just being completely forthright.

I just want people to know that everyone who lives with an ostomy that you see confidently right now, whether that's online or you meet them in a group, they were gobsmacked by this, too. It was not what they had planned for their life, and they had to go through a lot of lows to come to the point of acceptance.

And if you need help, there are resources and outlets. Do not close yourself off. Do not take a year to open yourself up to a community of people that can help you with tips and tricks and humor right now.”

What tips or tools have made living with an ostomy easier for you?

“Being prepared is a big deal for me. Whenever I find myself unprepared, something seems to happen. Because I work, I keep supplies at work, in my car, and on my person. I'm not so worried about it now because I've gone long enough, but keeping an extra change of clothes on you is never a bad idea. Just leave it in your car. If you have to run out to your car and get an extra change of clothes, at least you have it.

Beyond that, just in the moments of something going wrong, talk to yourself that it will be okay and you will get through it. And by the end of it, you'll probably be laughing about it as you reflect back with your ostomy friends. But go to those spaces, get that understanding, and never feel ashamed. I have these emotions daily, if not hourly.”

Where can people follow your journey?

“I would love if they do! I'm on Instagram at @Barefoot Ostomate, and on TikTok I'm @Barefoot Professional. I'm not really active on Facebook, but I do have a blog where I copy my social media posts at BarefootOstomate.com.”

Want to hear more from Amy? Check out the YMyHealth podcast on all streaming platforms and on our YouTube Channel!