This Colorectal Cancer Survivor Is Raising Awareness on the Disease on Instagram
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This Colorectal Cancer Survivor Is Raising Awareness on the Disease on Instagram

Oct 11, 2023

Amy Hart is taking control of her body image after a life-threatening diagnosis and flipping the script on a major medical taboo.

The first thing you notice about Amy Hart as she models bikinis, lingerie, and her stylish #OOTDs on her Instagram account, @barefootostomate, is that she's gorgeous. Oh, and she happens to be wearing an ostomy bag, a bag that collects bodily waste after part of the digestive tract has been surgically removed.

Hart was diagnosed with stage 3 colorectal cancer in late 2019 at age 34. She underwent 10 months of treatment — mostly during the early days of the COVID-19 pandemic — which she completed in October 2020. As part of that process, she had a nine-and-a-half-hour surgery, which included a total proctocolectomy (a complete removal of the colon and rectum) with an end ileostomy (in which the end of the small intestine is redirected through a hole in the abdomen), leaving her with the need to have a permanent ostomy bag to eliminate stool.

While many might be devastated by this turn of events, Hart took control of her body image after surgery. Everyday Health sat down with Hart to discuss her experience and her decision to use that she’d had this life-altering medical procedure to inspire, empower, and educate others and to raise awareness about colorectal cancer — all while destigmatizing ostomy bags and, somehow, even making them look sexy.

Everyday Health: When did you first learn that you were going to need an ostomy bag?

Amy Hart: As I was beginning treatment, about three months before my surgery. My doctor sat me down and said, "We're looking at the possibility of an ostomy bag," and I said, "A J-pouch?" (A J-pouch is an internal pouch created with the small intestine after the colon and rectum have been removed.) And he said, "No, a full bag."

Initially, he did let me consider a J-pouch, but I decided against that because it would mean keeping more of my digestive tract and that was going to end up being a risk for me. I felt strongly about not making the choice based on what was the easy thing for me appearance-wise versus what was the right thing for my family and me in the long term, and for giving myself the best chance to be here with my girls [her daughters were 3 and 7 years old at the time]. That was my driving thing: What gives me longevity? At my next appointment, the doctor said that ultimately, an ostomy bag was what we needed to do.

EH: How did hearing that affect you mentally and emotionally?

AH: Honestly, I felt so defeated, just awful. I felt like I was going to hide in my house and never go anywhere, and I wouldn't tell a soul. Like I would die before I admitted it to anyone. I hated it. I was so angry.

EH: What was the turning point in how you felt about needing to have an ostomy bag?

AH: Within the first week or two after learning I’d need to get an ostomy bag, I was on Instagram looking at inspirational quotes, and I was like, "Let me see: Is anyone hashtagging ‘ostomy?’’’ I typed in "ostomy" and saw that there are so many of us! There are young girls in bikinis, girls with cute outfits, guys who are ripped, regular Joes — all with an ostomy. And I thought, There are other people who are doing this! After I saw that, it relieved me. Leading up to my surgery, I had time to watch videos and take in content and read information. I had time to adjust my mind, too. If these people can do it — they're showing their ostomy bags in public, unashamed — then I can do that, too."

EH: What prompted you to start posting about it on social media?

AH: It was Fourth of July weekend in 2020. I’d had chemo a few days before so I felt sick. But I was going to go swim with my girls even though I felt awful. And I was going through my bathing suits, and I was so upset. My bag was hanging out, and I’d put on one bathing suit and then take it off. And I thought, Wow, this is wasting so much time and energy. And I feel like crap, but what does any of this matter? I put on my favorite bikini and looked at myself with the bag out, and I was like, You're fine. You can do this. Go swim with the kids. I took a picture of myself, captioned it "Let Freedom Ring," and posted it on Instagram.

I got all these messages, and it made me feel like the people writing to me were all me six or seven months earlier, when I was looking at Instagram for people with ostomies. So I started sharing more.

EH: What has been the hardest part about this experience?

AH: Recovering from surgery was the most challenging six weeks of my life. I had a surgical drain, I had restrictions on how I could sit, and I had this new ileostomy, which made me feel like I was a walking one-man band — I had all these things coming out of me, and bandages and staples, and it was so overwhelming. This is a lot of why I do what I do, because I want people to know that that stuff is ugly, and it is hard, and it feels impossible. And it's fair to feel those things about having your guts ripped out, but every day, you keep getting better and better. And eventually one day, you're just doing it, and you're in a public restroom going, "My bag is leaking," and you just rip it off and put on a new one.

EH: Have there been any unexpected positives that have come out of this experience?

AH: Yes, I was so hard on my body and myself prior to my cancer diagnosis. I was a people pleaser — I still am — but I’m working on it. I worried more about everyone else than I did about myself. It's taken some work, but now I look in the mirror and I like myself. I feel sexy and cute. I feel good when I put on an outfit or swimsuit. I feel good that I inspire other people to try to do that.

EH: What advice would you give to other ostomates (people who have ostomy bags) or those just learning that they’re going to need to have an ostomy bag?

AH: Take a deep breath and be nice to yourself. Give yourself some grace while you adjust to this idea. There's not one person in the world who hears that news and is just A-okay with it. Whether it's from a long-term illness that you've been suffering from or it's quick, like a surgical issue where you wake up with it, give yourself some time and grace to adjust to it. It sounds so cliche to say it gets better, but it really does. It gets better a little bit at a time and then all at once. I felt a little better, a little better … and then all of a sudden, I woke up one day and thought, Oh, I haven't been really worried about this in a while. I'm living my life with an ostomy. That's what I want them to know.

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Everyday Health: When did you first learn that you were going to need an ostomy bag? Amy Hart: EH: How did hearing that affect you mentally and emotionally? AH: EH: What was the turning point in how you felt about needing to have an ostomy bag? AH: EH: What prompted you to start posting about it on social media? AH: EH: What has been the hardest part about this experience? AH: EH: Have there been any unexpected positives that have come out of this experience? AH: EH: What advice would you give to other ostomates (people who have ostomy bags) or those just learning that they’re going to need to have an ostomy bag? AH: