Joanna Burgess-Stocks was 3 years old when she was diagnosed with cancer in 1965. That year, her family realized something was wrong when Burgess-Stocks cried in pain whenever she went to the bathroom. Her mother also started noticing blood in the toddler's urine.
Burgess-Stocks was soon diagnosed with rhabdomyosarcoma of the bladder, a rare type of cancer that affects muscle tissue. She was treated with a combination of chemotherapy and cobalt radiation for six months. (The cobalt radiation would wind up affecting Burgess-Stocks—now a nurse in the Raleigh, North Carolina, area—the rest of her life, but more on that later.)
Though treatment was successful, doctors also had to remove her bladder, which meant Burgess-Stocks needed another way to urinate. So she had an ostomy—a surgery that changes the way urine or stool exits the body. An ostomy that redirects urine is called a urostomy. During the ostomy surgery, doctors created an opening, referred to as a stoma, on the right side of her abdomen. The stoma was covered by a containment device for the urine, known as a pouch. By the time she was in first grade, Burgess-Stocks knew how to change, empty, and care for the pouch all on her own.
Growing up with an ostomy pouch
As little kid, "I really didn't know anything different," Burgess-Stocks, now 59, tells Health of having the urostomy pouch. But once she entered school, things changed. Back then, the pouch had to be glued to the body using cement paste. One time in first grade, the glue irritated her. "I started to feel really itchy, and I started to scratch, scratch, scratch, scratch, scratch, went into the bathroom, walked out, and my teacher saw blood all over my hands," she recounts. She scratched herself so much, her skin started to bleed. "And I remember her just whisking me up and running down the hall with me thinking something horrible had happened."
During grade school, she didn't tell many kids that she had an ostomy. But by the time fourth grade came, Burgess-Stocks made sure to always have a best friend she could tell her secret to. "It made me feel safer," she says. "I always had a lot of good friends, but I always made sure I had a best friend. And I always wanted my best friend to know my story just because, if there was some kind of a safety issue."
These formative years weren't just hard emotionally but also physically. In ninth grade, Burgess-Stocks started experiencing difficulty and pain while walking, as well as stomachaches from colitis, aka inflammation of her colon. She was also dealing with lymphedema, a chronic swelling of one of her legs. (By the time she was an adult, one leg was twice the size of the other.) All of it could be tied back to the cobalt radiation she had undergone as a child in the '60s. It's a very different kind of radiation than what is used for cancer treatment today. "I like my father's analogy of it: It's more like sort of a bomb going off in your body, rather than today they can pinpoint that radiation," she explains.
Come college, the colitis was getting worse. So was the pain with walking, both of which she tried to push through. What was actually happening was that Burgess-Stocks's hip bone was necrosing, also as a result of her radiation from years earlier, and her hips were beginning to wear out. The skin on her back that had been burned during radiation treatment eventually died off, and she needed plastic surgery to repair it. But just like she covered up her ostomy pouch, she also covered up her pain.
Getting a second ostomy pouch as an adult
While she found ways around the walking pain, the colitis pain and cramping could no longer be ignored. By her early 30s, the after-effects of the radiation had damaged her colon to the point where Burgess-Stocks became incontinent. "I couldn't go anywhere without knowing where a bathroom was. I really didn't have a life because I was tied to the bathroom," she says. "I was in constant pain. I couldn't eat. I was basically surviving on steamed vegetables and rice. I was about 85 pounds. It was a type of colitis that was miserable."
Burgess-Stocks realized she couldn't live like that anymore, and so she made the choice to get a second ostomy—a colostomy for fecal diversion. But even though she already had an ostomy, that didn't mean the decision was any easier. "It seemed easier to talk about urine than it did about stool," she says. "I think there's such a big stereotype with fecal ostomies, so it took a lot of pushing myself to just go for it and do it, because I did want to have my life back."
But getting a second ostomy also meant that she'd have a pouch on both sides of her body. And that was something she struggled with. "The urostomy is on the right side of my body, and I always was really proud that I had the whole left side of my belly to myself." But she was in too much pain to not do the procedure. At 34, she underwent a colostomy.
At that point, Burgess-Stocks was single and seeking a life partner. Now it wasn't just a urostomy that she had to bring up to any potential partner, but also her colostomy. "And how am I going to talk about that," she reflects. "I was OK talking about the urine. I was not okay talking about the stool. I really wasn't. I was like, nobody's going to get it. This is going to be awful."
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Becoming comfortable in her own skin
Over the years, Burgess-Stocks had learned how to cover up her urostomy pouch, which was especially important to her when it came to dating. "I would have this way of placing pillows so they wouldn't hear the crunch. And I would have them focus on the left side of my body instead of the right." When it came time to have the conversation about her urostomy, and later the colostomy, she'd tell her best friend it was "clincher time" and ask for prayers.
Most of the men she told were not familiar with ostomies and asked for her to explain it to them. One man was "pretty horrified" and "devastated" after she revealed the news. Burgess-Stocks says she's in a support group where other women with ostomies have described similar experiences. "It broke my spirit for a little while," she says. But she thought to herself, I want to get my vision of having a husband back. I want to believe in myself.
In her mid-40s, Burgess-Stocks started therapy with a counselor who helped her reach that vision. "[The therapy was] about learning how to see yourself as beautiful, and that maybe [I wasn't] so different from other people. Everybody struggles with something, whether it's an emotional struggle, a physical struggle, something," she says. Her counselor also helped her come up with the right language to tell a potential partner that she had two ostomies.
Soon, a new man came along. When she explained to him about her ostomies, using the communication tips from her counselor, "he did not bat an eye," Burgess-Stocks says. "He was like, 'OK, let's just talk about what this means. And I just want to make sure I don't hurt you. Let me know where everything is and what it means." After four years of dating, that man would eventually become her husband. She and Ross recently celebrated their 11th wedding anniversary.
Fighting to erase stigma
Burgess-Stocks graduated from nursing school in 1985. But it was her own experience through the decades that got her interested in becoming certified in wound, ostomy, and continence nursing, in particular, in 2008.
There are about 750,000 to 1 million people in the US living with an ostomy, according to the United Ostomy Association of America (UOAA). Each year, about 100,000 ostomy surgeries are performed. Burgess-Stocks is able to help hundreds of these patients a month as a wound and ostomy nurse at ConvaTec, a medical products and technologies company. There, she performs crisis intervention, provides counseling support, and sets people up with the necessary supplies. She also works with the UOAA, where she helped rewrite the association's Ostomy Continent Diversion Patient Bill of Rights, a tool patients can use to advocate for their care and improve outcomes.
With both groups, Burgess-Stocks is also helping to end the stigma associated with ostomies. With the UOAA, she has written letters to TV shows that perpetuate stereotypes about ostomies and the people who use ostomy pouches. She's also sent letters of support to shows that portray ostomies in a positive light and help break stereotypes. "It's been fun to find my voice and be an advocate for patients," she says.
At ConvaTec, she informs patients about others who had an ostomy and thought they'd never feel joyful again…only to realize the ostomy saved their life and brought them a deeper kind of joy. Says Burgess-Stocks: "They can finally say: 'Wow, this is my life and it's great. And I'm living my life. I'm doing the things that I love to do, and maybe I'm even doing more than I ever wanted to ever do because I understand my body. And I've overcome this difficult thing and, wow, how amazing that I was able to do that.'"
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