While more than 700,000 Americans have ulcerative colitis (UC), finding out you have the disease can be an isolating experience. UC is unpredictable, which can leave you feeling out of control. This can also make managing your symptoms difficult, if not impossible, at times.
Read what three people with UC wish they had known after being diagnosed with this chronic disease and what advice they offer others today.
Year Diagnosed: 2008 | Los Angeles, California
“I wish I had known that it was very serious, but you could live with it,” Brooke Abbott says. She didn’t want her diagnosis to control her life, so she decided to hide from it.
“I ignored the disease outside of taking my medicine. I tried to pretend it didn’t exist or it wasn’t that bad,” she says.
One reason she was able to ignore the disease was because her symptoms had gone away. She was in a period of remission, but she didn’t realize it.
“I didn’t have a lot of information about the disease, so I was flying a bit blind,” says the now 32-year-old.
She started noticing a return of symptoms after giving birth to her son. Her joints and eyes became inflamed, her teeth started turning gray, and her hair began falling out. Instead of blaming them on UC, she blamed them on pregnancy.
“I wish that I knew the disease could and would affect other parts of my body and not just stay isolated in my gut,” she says.
This was all part of the unpredictability of the disease. Today, she realizes it’s better to face the disease rather than ignore it. She helps other people with UC, especially full-time moms, through her role as a health advocate and on her blog: The Crazy Creole Mommy Chronicles.
“I didn’t respect the disease when I was first diagnosed and I paid for it,” she says. “Once I accepted the new normal, my life with UC became livable.”
Year Diagnosed: 1982 | Los Angeles, California
Daniel Will-Harris, 58, describes his first year with UC as “kind of horrifying.” He wishes he had known that the disease was treatable and controllable.
“I was afraid it would stop me from doing the things I wanted to do, from having the life I wanted to have,” he says. “Youcango into remission and feel good.”
Because there was no Internet at the time of his diagnosis, he had to rely on books, which often gave conflicting information. He felt his options were limited. “I researched it at the library and read all I could, but it seemed hopeless,” he says.
Without the Internet and social media, he also wasn’t able to network with other people who had UC as easily. He didn’t realize just how many other people were also living with the disease.
“There are a lot of other people with UC who are living normal lives. A lot more than you think, and when I tell people I have UC I’m surprised how many people either have it or have family members who have it,” he says.
While he’s less fearful today than he was during his first year, he also knows the importance of staying on top of the disease. One of his biggest pieces of advice is continuing to take your medications, even if you’re feeling fine.
“There are more successful drugs and treatments than ever before,” he says. “This greatly lessons the number of flare-ups you have.”
The writer’s other piece of advice is to enjoy life, and chocolate.
“Chocolate is good — really! When I felt my worst it was the only thing that made me feel better!”
Year Diagnosed: 2014 | San Antonio, Texas
Sara Egan wishes she had known just how big of a role the digestive system plays in one’s overall well-being and health.
“I had started to loose weight, food wasn’t appealing anymore, and my bathroom visits had become more urgent and more frequent than I could ever remember them,” she says. These were her first signs of UC.
After a CT scan, a colonoscopy, a partial endoscopy, and total parenteral nutrition, she received a positive UC diagnosis.
“I was happy to know what the problem was, relieved that it wasn’t Crohn’s disease, but in shock that I now had this chronic illness that I would have to live with for the rest of my life,” says the now 28-year-old.
Over the past year, she’s learned that her flare-ups are often triggered by stress. Getting help from others, at home and at work, as well as relaxation techniques have really benefited her. But navigating the food world is a continuous obstacle.
“Not being able to eat whatever I want or am hungry for is one of the biggest challenges that I face daily,” Egan says. “Certain days I can have regular food with no consequences, while other days I’m eating chicken broth and white rice to help avoid a nasty flare.”
Besides making visits to her gastroenterologist and primary care doctor, she’s turned to UC support groups for guidance.
“It makes the difficult journey of UC more bearable when you know there are others who are experiencing the same things and may have ideas or solutions that you haven’t thought of yet,” she says.