How a Support Community Can Help
When Melanie Storey, originally from New Orleans, found out she had ulcerative colitis (UC) in 2014, she was 16 and couldn’t wait to finish her freshman year of high school. She thought she would just take some medicine and that would be it. Instead, she started to get sicker. After graduating, she tried other drug treatments, but they didn’t work for her either. The next step was J-pocket surgery, the most common type of surgery for UC patients when medications don’t work.
“Even though I was fortunate enough to have supportive friends and family, 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 contacted a local chapter of the Crohn’s and Colitis Foundation, a nonprofit organization dedicated to finding cures for Crohn’s disease and ulcerative colitis and improving the quality of life for people with the disease. either form of inflammatory bowel disorder (IBD). Later, when she learned that another group called Girls with Guts, dedicated to connecting women with IBD, were holding their annual retreat in Chicago, Storey decided to go.
“Honestly, I had no idea how many resources were available until I needed them so badly,” Storey says. “I only found it when I looked.
Studies show that active UC can have a huge impact on your quality of life. Many people with UC have anxiety related to not being in control of the disease and its symptoms. Living with UC can lead to fears about the disease, its treatment, or just going to the bathroom on time. These daily challenges can make it difficult 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 host of other problems,” says Catherine Soto, director of patient education and support at the Crohn’s and Colitis Foundation. “Symptoms can keep people from going out and doing things they love.”
In addition to the treatment to control the disease, finding other people who have been there and who really know what it is can help. The Crohn’s & Colitis Foundation offers many options, including in-person support groups and various online offerings for people with UC that fit 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 directly connect patients with peer helpers who have faced similar challenges. Profiles in the app allow UC patients to connect with mentors based on basic characteristics like age. It’s also possible to find a mentor who has had the same surgery you are going to have or who has struggled with similar disease complications, Soto says.
“Sometimes patients need an individual connection with someone they identify with – someone who reflects their experience,” Soto says.
A leap of faith
For Storey, traveling alone from New Orleans to Chicago for a retreat where she knew no one was taking 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 thanks to Zoom. She also traveled to Atlanta to visit one of her new closest friends at UC.
Storey still needs to watch what she eats and make sure she sleeps well. His UC is still there. But at the same time, she no longer lets her consume her or worry her on a daily basis. If anything happens, she can count on the supports she has built. If Storey has any regrets, it’s because she didn’t start looking for support until she got really sick. She recommends reaching out earlier for help with more minor issues, like what’s good to eat on a bad day.
“You don’t have to have a terrible push to profit from what people are saying,” she says. “This is where you’ll feel most comfortable asking for support when you really need it.”
In addition to researching organizations, Storey found support for reading other people’s stories online. She says it can help just open up and talk about UC with people around you. She didn’t do this at first, but once she did, she was surprised at how many people could understand or knew someone else who could.
“I found that almost everyone I spoke to knew someone else who had it, but that never happened until it was opened,” she says. “You can also find support this way. When you talk about it, you will find resources or friends and it can be supportive for you as well. “
There is no doubt that life with the CPU is not easy. Sarah Lemansky, a Girls with Guts colleague who also has UC, goes through tough times with the help of the community she’s built as well as the strength she’s found in herself.
“There is pressure people put on themselves to get better and be ‘normal’,” says Lemansky. “The pressure to be normal is an important thing. I have decided that I will get there when I get there if I get there.
Lemansky’s advice is to practice patience with yourself. “It’s important to be supportive for yourself at the end of the day,” she says. “Self-patience has been so crucial for me on my journey.”
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