Troy was diagnosed at age 13 and went on to have 15 open abdominal surgeries, including an ileostomy at age 16. The ileostomy procedure, in which the colon and rectum are removed, and a pouch is attached to a hole in the abdomen to collect waste, was a major source of stress and shame for her. “I spent so much time hiding who I really was,” Troy says. “It took a huge, huge toll on me.” It wasn’t until after she reached out to a support group and started talking openly about her struggles with ulcerative colitis that Troy realized keeping her pain inside was bad for her health.
Living in the Open With Ulcerative Colitis
Ulcerative colitis changed everything for Troy. As a swimmer, she was used to fueling herself with big meals before her illness. But once it hit, she was forced to live on plain pasta and crackers, or else suffer grim consequences, including bouts of urgent diarrhea anywhere from 30 to 50 times a day. In a cruelly ironic twist, sometimes she couldn’t even stomach water. Between her symptoms and surgeries, Troy missed an entire year of high school and took two exams in the hospital. To make things worse, only her parents knew the full extent of her suffering. She talked about ulcerative colitis with her friends, but only in broad, general terms, not in gory detail. Her move away from isolation started when her mother encouraged her to check out a website called The J-Pouch Group, where she was able to connect with a couple of people with similar experiences. From there, she discovered a Facebook page called The Great Bowel Movement, which promotes awareness of Crohn’s disease and ulcerative colitis. As Troy began connecting with others like her, she became more involved in activities to advocate for people with IBD. After a two-day bike ride with the charity cycling event Get Your Guts in Gear, she felt like she had a whole new family. “I finally embraced my community,” she says. “It was the greatest thing I could have done.” A couple of months later, she started a blog, which she has shifted away from more recently to write for InflammatoryBowelDisease.net. She says when she first posted an entry from her blog on Facebook, it blew people away. “They knew I had been sick, but didn’t really understand what I was going through physically and emotionally,” she says. “It was very therapeutic.” Since she started building relationships in the IBD community, Troy feels like a weight has been lifted off her shoulders. Knowing other people who share her experiences makes her feel like she’s not alone. Her isolation is over.
Invisible Illness: Why IBD Advocacy and Awareness Matter
Since ulcerative colitis is a mostly invisible illness, most people don’t understand how serious it can be. “Most people don’t know someone with ulcerative colitis or an ostomy,” says Frank Sileo, PhD, a licensed psychologist and executive director of the Center for Psychological Enhancement in Ridgewood, New Jersey, and a children’s book author who writes books about IBD. That’s part of why the illness remains cloaked in mystery for many people. Troy says that before she started speaking and writing openly about ulcerative colitis, some people compared it to food poisoning or irritable bowel syndrome (IBS). Because some of the symptoms are the same, people often don’t grasp the severity of a chronic disease like ulcerative colitis. Greater awareness of IBD like ulcerative colitis is really important, she says, because “the more people understand, the easier it is for people with this disease.”
What You Need to Know About Ulcerative Colitis
Ulcerative colitis affects men and women of all ages, causing inflammation and open sores, or ulcers, in the colon. The inflammation, in turn, causes frequent emptying of the colon, resulting in diarrhea (often accompanied by bleeding) and pain and cramps in the abdominal area. The cause of the disease is unclear. Researchers believe that a number of factors are involved, including a person’s genes, their immune system, and environmental factors, such as diet, drugs, and stress. It’s possible that even with the symptoms of ulcerative colitis, you may have another gastrointestinal condition with similar symptoms. Before you are diagnosed, your doctor will collect stool cultures, give you a physical, and typically order a colonoscopy and a biopsy, or tissue sample, of your colon. For many people with ulcerative colitis, medication can be used to reduce the inflammation and keep the symptoms under control. Typically steroids are given as a first step for short-term treatment, and biologics, aminosalicylates, and immunomodulatory drugs are used to keep the disease in long-term remission. If medication fails to keep the symptoms in check, surgery may be required. For some people with ulcerative colitis, surgery is optional, while others may require it due to complications. Roughly 23 to 45 percent of people with the disease eventually require some type of surgery to manage the disease. Sometimes symptoms remain even after ostomy surgery, says Joseph Pinzone, MD, medical director of AMAI Medicine and Wellness Practice in Santa Monica, California, and an assistant clinical professor of medicine at the David Geffen School of Medicine at UCLA in Los Angeles. Although the body is very adaptable, some people still experience incontinence, diarrhea, rectal bleeding, mucus, abdominal pain, and urgent needs to use the bathroom. But Dr. Pinzone adds that the symptoms are an improvement over what people experience before surgery. While Troy’s experience with ulcerative colitis has been brutal, she sees positives in it. “It’s made me a more compassionate person,” she says, adding that it has helped her to be nonjudgmental and appreciate the love and support she has. “I was always close to family, but having this disease made me understand how important it is to have close family, friends, and a support system,” she says. “It has shown me how important people in my life are.”
