A recent diagnosis of ulcerative colitis (UC) can leave you reeling. Managing life in your late teens and 20s is already tough, and having an inflammatory bowel disease such as UC can make it tougher. But people who live with the condition say that it is manageable — and you can even thrive.
“It can be tough at first to cope with UC flares, because oftentimes, people assume you’re fine because you look perfectly healthy,” says Victoria Tyler, 38, a social media ambassador for the Crohn’s & Colitis Foundation in Fort Worth, Texas. “But inside, it feels like your body is literally about to kill you.”
But with the right support and right attitude, you can thrive, stresses Taylor, who has lived with UC since 2008. Here’s what patient advocates want you to know about life after flares when you have UC.
Acknowledge the Exhaustion
Fatigue is a common symptom of an ulcerative colitis flare. But it’s more than just the feeling that you are tired. “It’s an exhaustion that can consume you — no matter how much rest you get, it won’t go away,” explains Tyler. “You feel too wiped to do regular things like shower, get out of bed, or brush your teeth. It feels like you have to force yourself to live.”
Tyler often felt pressure to push through the fatigue as a busy mom of two young kids. But eventually it became too much. “Eventually, you have to acknowledge that you can’t show up the way you want to, and that your children, relationships, and job all suffer as a result,” she says. “You need to take a moment and pause to let your body calm down.”
For Tyler, that also meant that she dropped her pride and asked others for help. “You need to lean into your village,” she says. Tyler was lucky that her family lived nearby. They stepped up and helped her with her children.
“My mom would stop by to prepare a meal, and my aunt Katherine would come by to tidy up my house and make sure no dishes were left in the sink,” Tyler recalls. Friends lent her money to help her cover bills when she had to take a leave of absence from work.
If you don’t have a built-in support system, Tyler recommends that you ask your doctor for help. They can help refer you to services or support. The Crohn’s & Colitis Foundation also has information on how to find a support group, as well as links to financial resources.
Don’t be afraid to ask others for help, too. “We live in a very individualistic culture in the United States, and it can be awkward to ask someone to look after your children, or prepare meals,” says Tyler. “But as my mom always said to me, ‘if you have a closed mouth, you don’t get fed.’”
Be Proactive
For years, Kimberly Hooks, 42, a patient advocate with ulcerative colitis who lives in Powder Springs, Georgia, had to map out her daily routine. “I always left myself enough time in the morning for three bathroom visits before I got on the road for a 50-minute drive to work,” she says. She also paid attention to what caused her flares, such as caffeine or large meals, so she could avoid them.
She also carries an emergency bag with her wherever she goes that contains baby wipes and a change of clothes. “My husband calls me the bag lady, but it’s always good to have the bag in case of an unexpected accident,” says Hooks. “It also makes me more comfortable to continue my everyday routine when I have a flare. I just give myself grace if it happens, and remind myself that this is temporary.”
Audrey Atkins, 51, a pediatrician in Austin, Texas, who lives with ulcerative colitis, says she makes sure to know exactly where the bathroom is for every single place she goes. “It also helps to have an extra sweater that you can tie around your waist if needed, in case you do have an emergency and don’t make it to the bathroom in time,” she adds.
The Crohn’s & Colitis Foundation also provides its members with a physical “I Can’t Wait” card to help explain to businesses why they may need access to a private restroom.
Listen to Your Body
It can be lonely to live with ulcerative colitis. “It’s hard to go out, so you are often at home alone, and you may feel embarrassed to explain your UC to others,” says Atkins. She herself found it particularly challenging to navigate UC when she was diagnosed in 2009, when her daughter was a newborn. “For years, I pushed my body through medical school and residency, even when I was tired or sick,” she recalls. “It was hard to go from that ‘go, go, go’ mentality to pulling back to give my body time to heal.”
What has helped her over the years is self-care. “I find time to rest and recharge, even if it’s just a 10-minute soak in the bathtub,” she says. She also makes sure she stays active, even if she has a flare. “I may not be able to do my regular workout, but I try to at least go out for a 10- to 15-minute short walk,” she explains. “It gives me more energy and boosts my mood, so I feel better.”
Her other bit of advice: Connect with friends. “If you don’t feel like you can go out, schedule a phone call or FaceTime chat, so you can stay engaged with loved ones,” Atkins suggests. Research shows that strong social support can help improve quality of life in people who live with inflammatory bowel diseases like ulcerative colitis.
Let Go of the Guilt
When Tyler met her current husband, she hid the fact that she had severe ulcerative colitis for as long as she could. “I went so far as to even take the antidiarrheal medication Immodium before our dates, so I wouldn’t run to the bathroom,” she recalls.
Yet when Tyler did open up to him, she was pleasantly surprised. He asked her many questions about the disease, including her symptoms, triggers, and medication. He brought her chicken soup when she had a flare and drove her to infusion treatments.
“It was difficult to date him initially because I felt guilty,” says Tyler. “I felt he deserved someone ‘normal’ and ‘healthy’ so he could continue to lead his regular life. I even tried to break up with him several times. But he stuck around.”
Tyler also experienced guilt with her children, now 21 and 16. “I was hospitalized more times during their childhood than I can count,” she says. “But they adjusted. I was lucky that the nurses made it fun. My kids are probably the only ones who grew up thinking syringes were water guns.”
Today, there is a silver lining: Her 21-year-old daughter has decided to go into the medical field. “She saw me in pain and wants to spend her life helping others,” says Tyler. “It made me realize that as mothers, there are no books or rules. We do our best every single day, and our kids understand.”
Don’t Give Up on Treatments
Both Tyler and Hooks had surgery to remove their colons. “For years, doctors would put me on medications like biologics, which would work for a few months, and then I’d be back right at square zero,” says Tyler. “It was this constant yo-yo between flares and remission.”
Since surgery in 2021 to remove her entire colon, Tyler says she hasn’t had any symptoms. “I spent so much of my adult life dealing with ulcerative colitis; it was initially hard to believe,” she says.
While Hooks’ flares have improved, she still has them. “I was able to avoid medication for four years, after my surgery in 2020,” she says. Now, her J-pouch (a pouch a surgeon creates inside your body to replace your colon) occasionally becomes inflamed. She now takes a biologic injection every two weeks.
“Initially, I was given an IV biologic infusion every eight weeks, but I noticed its effects wore off after about six weeks,” says Hooks. “It’s very important to track symptoms carefully, and to let your doctor know, so you can advocate for better treatment. Don’t let your concerns be dismissed. Your goal should be to lead a symptom-free life as much as possible.”
When in doubt, speak up. “You can absolutely live a quality life with ulcerative colitis,” stresses Hooks. “When you are first diagnosed, educate yourself about ulcerative colitis as much as possible. Find others who live with the condition. The more you learn, the better able you are to advocate for yourself, so you can live a full life, even with the occasional flare.”
