When New Orleans native Melanie Storey found out she had ulcerative colitis (UC) in 2014, she was 16 and looking forward to finishing her junior year of high school. She thought she’d just take some medicine and that would be it. Instead, she started getting sicker. After graduation, she tried other drug treatments, but they didn’t work for her either. The next step was J-pouch surgery, the most common type of surgery for UC patients when drugs don’t work.
“Even though I was lucky to have friends and family supporting me, once I got to the point that I was so sick, it wasn’t something they could fully understand,” Storey says. “I was grateful. But at the same time, I needed someone who knew what I was going through.”
Storey reached out to a local chapter of the Crohn’s and Colitis Foundation, a nonprofit dedicated to finding cures for Crohn’s disease and ulcerative colitis and improving quality of life for people with either form of inflammatory bowel disorder (IBD). Later, when she heard that another group called Girls with Guts, dedicated to connecting women with IBD to each other, was having its annual retreat in Chicago, Storey decided to go.
“I honestly had no idea how many resources were out there until I needed them so much,” Storey says. “I didn’t find it until I looked.”
Studies show that active UC can take a big toll on your quality of life. Many with UC have anxiety related to a lack of control over the disease and its symptoms. Living with UC can cause fears related to the disease, its treatment, or simply getting to the bathroom on time. These everyday challenges can make it hard to work and play. As a result, people with UC often struggle with isolation, anxiety, and depression.
“UC often has complications and symptoms that lead to a multitude of other issues,” says Catherine Soto, director of patient education and support at the Crohn’s and Colitis Foundation. “The symptoms can prevent people from getting out and doing things they love.”
In addition to treatment to get the disease under control, finding other people who’ve been there and really know what it’s like can help. The Crohn’s & Colitis Foundation offers many options, including in-person support groups and various online offerings geared to people with UC fitting any description, Soto says. Virtual offerings include the Foundation’s community website, Facebook group, and a peer-to-peer support program called Power of Two.
The Power of Two program uses an app to connect patients directly to matched peer supporters who have faced similar challenges. Profiles in the app allow UC patients to match themselves up with mentors based on basic characteristics like age. It’s also possible to find a mentor who has had the same surgery you’re going to have or who has struggled with similar disease complications, Soto says.
“Sometimes patients need one-on-one connection to someone who they identify with — someone who reflects their experience,” Soto says.
A Leap of Faith
For Storey, traveling from New Orleans to Chicago on her own to a retreat where she knew no one took a leap of faith. But once there, she met other women from all over the country who really understood what she was going through. Three years later, with her UC under control, she keeps in touch with many of them through Zoom. She’s also traveled to Atlanta to visit one of her closest new UC friends.
Storey still has to watch what she eats and to make sure to get plenty of sleep. Her UC is always there. But at the same time, she doesn’t let it consume or worry her from day to day anymore. If something does come up, she can rely on the supports that she’s built. If Storey has any regrets, it’s that she didn’t start looking for support until she got really sick. She recommends reaching out earlier, for help with more minor concerns like what’s good to eat on a bad day.
“You don’t need to have a terrible flare to benefit from hearing what people say,” she says. “It builds up to where you will feel more comfortable seeking support when you really need it.”
In addition to seeking out organizations, Storey found support in reading about others’ stories online. She says it can help just to open up and talk about UC with the people around you. She didn’t do that at first, but once she did, she was surprised by how many people out there could relate or knew someone else who could.
“I found almost everyone I talked to knew somebody else who had it, but it never came up until I was open,” she says. “You can also find support in that way. When you do talk about it, you’ll find resources or friends and that can be a support for you as well.”
There’s no doubt that life with UC isn’t easy. Sarah Lemansky, a fellow member of Girls with Guts who also has UC, gets through the tough times with the help of the community she’s built as well as the strength she’s found in herself.
“There’s pressure people put on themselves that they need to get better and be ‘normal,’” Lemansky says. “The pressure to be normal is a big thing. I decided I’m going to get there when I get there if I get there.”
Lemansky’s advice is to practice patience with yourself. “It’s important to be a support for yourself at the end of the day,” she says. “Self-patience has been so crucial to me in my journey.”