Diagnosed with the disease on the third day of school, Victoria racked up so many absences because of fevers, abdominal pains, and diarrhea — she missed over 120 days in the classroom by year’s end — that she passed eighth grade by the skin of her teeth. But she ended up having to take her ninth-grade coursework twice. “It sucked,” Victoria says of her experience. But it would have been much worse, she believes, if it weren’t for her mother, Vivian. Though Victoria’s UC deprived her of a typical adolescence, Vivian fought to make sure her daughter could still enjoy her life, build relationships, and envision a future that wasn’t defined by her disease. Now a sophomore at Five Towns College on Long Island, Victoria marvels at her mother’s support. She knows that being the caregiver for someone with UC isn’t easy: “Mom always pushed me to get out of the house, to do things, and even though there were some terrible times, I look back and think, ‘She handled that really well.’” According to the Crohn’s and Colitis Foundation of America (CCFA) (PDF), 1.6 million Americans currently have an inflammatory bowel disease (IBD) — including UC and Crohn’s disease — and most of them are diagnosed before age 35. Though the disease is never easy to manage, teenagers’ unique vulnerabilities can make it even harder. IBD’s painful symptoms, physical complications, and social consequences can nudge emotionally fragile teens toward the brink of despair. But with the right support, teenagers with IBD can thrive in spite of their illness. Here’s what parents need to know based on Victoria and Vivian’s experiences and insights from medical experts.
How IBD Makes the Teenage Years Tougher
First, it’s important to consider why IBD is so hard for teens to deal with. IBD is a chronic autoimmune disorder that unpredictably inflames patients’ digestive tracts. The disease is difficult to control, and IBD’s long list of complications can profoundly disrupt patients’ lives — especially if the patients are teenagers. Flare-ups of inflammation can, for example, compromise children’s physical development. “IBD interferes with the body’s ability to absorb nutrients,” says Laurie Keefer, PhD, a gastrointestinal health psychologist at Mount Sinai Hospital in New York City. “For these kids, that might mean a delayed onset for puberty, or slower growth, or having a hard time putting on muscle mass.” This can be hugely upsetting for teens, who are already predisposed to feel self-conscious about their bodies. And the embarrassments don’t stop there. Steroids, a common treatment for IBD symptoms, can cause severe breakouts of acne, which no teenager ever wants to deal with. “There’s a fragility of body image in adolescence,” Keefer says. “IBD can absolutely make it worse.” Add to this an even more mortifying problem: IBD-related bowel incontinence. Diarrhea is a constant companion for people with IBD. When teens are navigating their high school halls, the typical four-minute interval between classes may not be long enough for them to get in and out of a bathroom. The fear of having an accident can be paralyzing. Vivian remembers how Victoria could never be far from a toilet. “She couldn’t even make it through a class,” she recalls. As time went on and symptoms got worse, this meant Victoria had to wrestle with another of IBD’s consequences: social isolation. She had to withdraw from high school, bow out of clubs and activities, and spend most of her time at home. “Some of these kids are tethered to the bathroom because they don’t feel good,” Keefer says. “And the unfortunate fact is, when classmates are out sick that long, they sort of get forgotten.” Victoria’s hiatus from classes lasted her entire high school career. She missed the milestones — proms, football games, impromptu get-togethers after classes — that all her friends experienced. All of this, naturally, took a toll on her mental health. “The isolation and the pain sometimes really got me down,” she says. Even for otherwise healthy and stable adults, IBD’s physical pains and social estrangement can be miserable. Teenagers, who don’t always have the maturity to manage their own emotions, suffer that much more. “We screen for depression for every IBD patient, because there’s a correlation between depression and IBD-symptom severity,” says Faten Aberra, MD, a gastroenterologist and co-director of the Inflammatory Bowel Disease Center at Penn Medicine in Philadelphia. “Teenagers are just figuring themselves out — emotionally, socially. On top of that they’re learning to grow up with a chronic illness. It’s really tough.” Research shows that anxiety and depression are particularly prevalent among young adults with IBD. One study, published in November 2019 in Pediatric Gastroenterology, Hepatology & Nutrition, looked at a sample of more than 11 million children, teens, and young adults, 58,000 of whom had IBD. The researchers found that those with IBD were 5 times more likely to have psychiatric disorders like depression and anxiety than those who did not have the disease. Other research, published in September 2020 in the journal Quality of Life Research, found that higher levels of pain and more severe disease were associated with poorer mental health in teens and young adults with IBD. Embarrassment related to the disease also led to increased depression, anxiety, and loneliness. A Swedish study published in the August 2019 issue of the journal JAMA Pediatrics followed the development of 6,464 individuals who were diagnosed with IBD in childhood — and found a marked increase in anxiety disorders and suicide attempts, compared with the general population. “That suicide risk is rare, but it’s real,” says Dr. Aberra. “Especially when the abdominal pain is severe.”
Parents: Here’s What You Can Do
Those trends are alarming. But Keefer and Aberra point out that most teens’ mental health issues will never get so extreme and that the right parental intervention can make all the difference. Here are the steps they recommend to minimize the risk of anxiety and depression: Watch for red flags. First, parents should look out for indications that their teen’s mental health has taken a turn for the worse. Some signs include excessive irritability, changes in sleep patterns, extreme isolation, or marijuana use. “I’d be especially concerned if the child were afraid to go back to school, or if they’re using marijuana a lot,” Keefer says. “Those are classic avoidant behaviors and probably indicate an anxiety disorder.” Connect kids with mental health professionals as soon as possible. If parents notice their teen’s mental health deteriorating, getting a psychiatric or psychological evaluation is the next step. But Aberra believes parents shouldn’t wait that long to make a mental health practitioner a part of the child’s care team. “IBD care is never just about gastroenterologists. Psychological health and digestive health are closely connected,” she says. Aside from lending a vital perspective to patient care, psychiatrists can teach coping skills — or even prescribe psychoactive medication — that can help teens better manage the emotional consequences of IBD. Build independence and resilience. An important thing to remember: As teenagers become adults, they’ll have to learn to manage IBD without parental help. Aberra wants parents to keep this in mind as teenagers get closer to turning 18. “Don’t get overbearing, don’t steamroll them,” Aberra says. “Let them speak for themselves in the doctor’s office, let them remember to take their medication on their own, teach them about insurance and finances. Give them their own voice to speak up for their care.” Not only will they be better able to navigate their own care choices, but they can also feel empowered with a greater sense of control over the disease. Manage your own emotions. Finally, Keefer advises parents not to let their own feelings overwhelm their children. “Teenagers are very emotionally receptive,” he says. “When parents are full of anxiety, or they’re fretting a lot about this or that symptom, the kids are going to pick up on it.” Research bears this out. One study examined how 184 parents managed their children’s abdominal pains. The researchers found that when parents catastrophize (assume the worst) about their children’s symptoms, they tend to engage in overprotective behaviors, like administering too much pain medication or enforcing too much bed rest. This, paradoxically, makes the children feel worse. Another study, published in the journal Pain, approached the problem from a different angle. Researchers delivered cognitive behavioral therapy to 316 parents of children with abdominal pain related to IBS. The therapy helped parents avoid catastrophizing and moderated their overprotective responses, which resulted in children coping better with their disease. Although the research was done on parents whose children had IBS, it is reasonable to infer that it might be helpful in kids with IBD, too.
The Best Treatment Might Be a Richer Life
If, as this evidence suggests, fretting doesn’t help, what should parents do for their kids? Research published in April 2017 in the journal Children suggests mind-body interventions like psychotherapy, mindfulness, and yoga can be helpful in managing distress in children and teens with IBD. Parents may also want to suggest teens attend a support group where they can connect with their peers who understand what they’re going through. The CCFA offers a number of support groups and online communities for those affected by IBD, including teens. Keefer offers some additional advice. “Sometimes, honestly, the best thing is just to distract them,” she says. A study published in the journal Pain supports that suggestion. Researchers instructed 223 parents of children with chronic abdominal symptoms to either “keep your child focused on how his or her body is feeling” or to use distractions (activities or redirecting questions) to “keep your child’s mind off how he [or] she is feeling.” The children who reported feeling better in the end? The distracted ones. Children whose parents lavished attention on their symptoms had more than double the number of symptom-related complaints afterward. This was why Vivian resolved to keep her daughter busy. Instead of letting Victoria brood, she packed her daughter’s schedule as much as she could. Victoria’s high school years included drum lessons at home, a rotating roster of visits from friends, trips to catch New York Rangers games, and, somehow, more than 10 Pat Benatar concerts. Both Vivian and Victoria report that keeping up this frenetic activity, and balancing it all against her UC symptoms, was never easy. But in the end, Victoria emerged as a happy, independent college student — who, for now, is in remission. Victoria thinks parents could do a lot worse than to follow her mother’s lead. “Those years were hard, but I have a lot of good memories because of Mom,” Victoria says. Additional reporting by Ashley Welch.
