By Agata Blaszczak-Boxe
Abby Bales at a Manhattan gym. Photo: A. B. Boxe
One day last year, Abby Bales, a personal trainer and graduate student in New York City, was riding home on the subway. She wasn’t feeling great. Her insides had been acting up on her for a while and she had been diagnosed with ulcerative colitis a couple of years before. Bales got off the train at her stop and started walking home. Suddenly, she lost control of her bowels. She hurried home, and when she got there, she started crying, tired of dealing with the nightmare that UC had turned her life into. Her husband was home and tried to comfort her, but there was nothing at that moment that could have possibly made her feel better. “That was my emotional bottom,” she says. “I just couldn’t believe that at the age of 32 I couldn’t control my bowels. It was just insane that this disease was making me infantile.”
That accident made her realize that it was time to have her colon completely removed. During a procedure called ileostomy, the surgeon made an opening in her abdomen called a stoma, which passes waste to an external colostomy bag. Considering what a taboo topic bowel diseases are to many people, most patients would have likely remained silent about their experience. But not Bales. Not only did she write about it on her fitness blog Run Stronger Every Day, but she also posted photos of her post-surgery self. One photo shows her in her running bra, her abdomen bare, with the colostomy bag attached. In another image, she has removed the bag and revealed her stoma. “It's a disease that people all over the country and world live with silently," she writes on her blog. "Well, not me. I've been open about my disease, my bag, my stoma named Rosebud, and my fight."
Even in the worst moments, Bales did not let ulcerative colitis defeat her. When it got really bad and she could not run outside, as she usually liked to, she moved to the treadmill. She continued attending pre-med classes at NYU. Now, having undergone two serious surgeries, she is technically free of ulcerative colitis. She is finishing her first year of a doctorate program in physical therapy and continues to train clients in her free time.
In the spring of 2010, Bales was working as a personal trainer and preparing to return to school to take prerequisites for a doctoral program in physical therapy. All of a sudden, she started to experience constipation. “Then I started seeing blood.”
She called her GP right away. Her grandmother had died of colon cancer in her early 50s. “I was very, very worried that I had cancer.”
Her doctor diagnosed her with ulcerative colitis and sent her to see a specialist, who told her that her case was mild. He said that, with medication, she should be able to function normally. He was wrong.
A year later, while running in the New Jersey Marathon, she experienced unusually intense symptoms that forced her to be “stuck at the porta johns from mile 13 to 20.”
“I was dehydrated and things were blurry, and I didn’t think I was going to finish,” she says. “I think that was when I realized that I was sick, and that it was something that could stop me from living my life.”
This turned out to be the beginning of a year-long flare-up, an increase in symptoms, which turned Bales’s life into a nightmare. “I couldn’t walk to the elevator in my apartment building without losing control of my bowels,” she says. “And I didn’t have any kind of warning when it would happen. It would just happen.”
“It is a horrible way to live, a horrible way to live,” she says. “And I’m a social person, it made me not be social. I felt very alone and very closed off from whatever everyone else was doing because I couldn’t be social.”
She tried hydrocortisone enemas and chemotherapy. Nothing worked, while her symptoms were getting worse every day. Ulcerative colitis was gradually destroying her colon. The lining of her colon became severely inflamed and ulcers developed, resulting in bleeding and diarrhea. “When he said the next option was surgery, I didn’t question him, I didn’t need a second opinion,” she says. “He was telling me this like he would tell his wife. That this is the next step. And this is the last step.”
The last step, because the surgery would remove her entire colon, a part of the digestive system that is responsible for extracting salt and water before waste is eliminated from the body. She would technically no longer have colitis but she would also no longer be able to fully digest her food. Ileostomy, the surgery that changed the way Bales' body got rid of waste, took place in the spring of 2012, and went as planned.
But getting used to the new way her body worked was not easy. She remembers how her best friend visited her in the hospital and tried to help her deal with the situation. “I told her I didn’t wanna be a freak with this bag and this stuff,” she says. “I felt like a freak, and she reassured me that I wasn’t.”
Her husband, a former Marine who spent 11 years in the Marine Corps, was also supportive. They met five years ago at a bar in New York and got married in the fall of 2009. “He was so great,” she says. “You know, the things that husbands say like ‘You’re beautiful, I don’t care about the bag.’ And he was genuine about it.”
Once Bales recovered from surgery and got accustomed to the colostomy bag, she was able to enjoy her life again. She exercised, socialized and attended classes without interruption. She talks about her first post-surgery run, “I didn’t feel urgency,” she says. “I remember that was like a miracle.”
In the fall of last year Bales had a second surgery, in which the surgeon constructed a reservoir out of her small intestine called a J-pouch that holds stool until she is ready to have bowel movement. Now she does not need a colostomy bag anymore and her body can get rid of waste naturally. And all that is left from the stoma is a scar on her stomach.
It seems that Bales’ openness about her disease has won her a number of fans, who show their support in the comment section of Run Stronger Every Day. “I also suffer from UC, but from what my doctors tell me it’s more of a mild case since it’s only left sided,” writes Sarah, one of the visitors to her blog. “So thanks for being so honest and strong. You really help others like me know we’re not alone because NO ONE TALKS ABOUT IT!!!”
But she remains humble and says that her own ulcerative colitis experience has raised her awareness of other people’s suffering. “It’s nothing,” she says. “It’s nothing compared to what some people go through. Nothing compared to the kids at Camp Oasis, which is a camp for inflammatory bowel disease children, where they can go and be together and other people know what they are going through. These kids have never known life without disease.”
The recovery after the J-pouch procedure went well. “I feel really good now,” she said a few months after the surgery. “I can do pretty much everything. Everything is making me sore though because I am still building my muscles back, my strength training back.”
But she stays strong and, as usual, does not give up. "I have colitis. I had a colostomy bag. I have a J-pouch now. And I am a BADASS,” she writes on her blog.
Agata Blaszczak-Boxe is a health and science journalist based in New York. You can find her here and follow her on Twitter: @AgataBoxe