How I ‘Adult’ With Ulcerative Colitis

Sneha Dave, 22, was diagnosed with ulcerative colitis (UC) at age 6. But it wasn’t until she was in junior high that the condition — a chronic inflammatory bowel disease (IBD) of the colon — flared up so severely that she was no longer able to go to school more than once or twice a week.

By ninth grade, Dave weighed just 60 pounds, and her mother had become her primary caretaker.

“I didn’t have any real social interaction with anyone except my mom or the hospital staff,” Dave says.

Dave’s health improved after she had J-pouch surgery — a procedure where the colon and rectum are removed and an internal pouch is constructed with the end of the small intestine — but at the end of high school, she found herself confronting another hurdle: turning 18.

For young people with chronic IBD, entering legal adulthood means phasing out of pediatric care and into adult care, a process that can be logistically challenging and emotionally overwhelming. And a less-than-smooth transition can make it harder to control the disease.

Suddenly, Dave was tasked with finding a new doctor and navigating insurance policies for the first time, all while moving to college and into a dorm with new peers.

Managing IBD: From Childhood to Adulthood

As many as 80,000 children in the United States have IBD, according to the Crohn’s & Colitis Foundation, a number that represents about 5 percent of all cases. IBD in people who are diagnosed under age 20 also tends to be more severe than in people who develop it as an adult.

Ideally, transitioning from pediatric care to adult care would start early, far before it’s necessary, says Andrew Grossman, MD, a pediatric gastroenterologist at Children’s Hospital of Philadelphia. He advises teenagers, who are moving from adolescence into young adulthood, to start taking ownership of their medical care.

That doesn’t mean you should start haggling with insurance companies at age 12, but it’s a good idea to start taking a more active role in your care as you get older. A first step, says Dr. Grossman, could be learning more about UC itself — being able to describe the disease to someone else is a good skill — and how to talk to your doctor at your appointments, rather than relying on a parent to speak for you.

As you approach adulthood, you should also learn how to schedule a doctor’s appointment on your own and keep it on your calendar, Grossman says. If you can drive, you may even want to drive yourself (and your parent, if one is accompanying you) to the appointment.

“As an adolescent, you go from very communal care, where providers act as a unit with the parent, to a relationship between the patient and provider,” he says. After age 18, parents aren’t as actively involved in their child’s medical care, which can take some adjusting.

How Teenagers Can Start Taking Control of Their UC

If you’re a young patient with UC, it’s never too late to devise a plan with your pediatric doctor and caregivers. Here are a few steps you can consider taking.

• Look for a new adult doctor. Search for a provider in your current area, or if you’re moving away from home to attend college or start a job, find one in your new location. Ask for recommendations from your current doctor, as well as from peers in your area if you’re a member of a young adult support group, Grossman says.
• Be honest with your doctor. Speak up about your lifestyle — for example, if you're under a lot of stress, if you've been pulling all-nighters, or if you drink alcohol or use recreational drugs, since these may lead to a flare.
• Familiarize yourself with your insurance. Learn how to call your insurance company and read your insurance card or how to access Medicaid if you don’t have insurance. If you get infusions in another state, read up on any insurance rules that you may be required to follow.
• Do some prep work. If you have questions for your doctor, write them down before your appointment, and don’t hesitate to ask them once you’re face-to-face with your healthcare provider. (You can practice at home with a trusted adult.)
• Learn how to take notes during an appointment. If you jot down important points your doctor makes, you can refer back to them if you have any questions. Take advantage of apps designed for people with UC or Crohn’s disease that include note-taking tools for doctor visits.
• Learn how to use an e-portal. Practice logging into your patient portal and using the electronic medical records, Grossman suggests.
• Know how to reach your doctor. It’s a good idea to learn the best way to communicate with your healthcare provider, which could mean calling the office, putting in a request through the electronic system, or scheduling a video appointment.
• Establish a medication (or infusion) schedule. Setting a schedule will help you stay on track with your treatment. Another tip: Think about what you’ll do on the days when you’re sleeping away from your dorm or apartment.
• Consider your other health needs. Will you need to start family planning, such as hormonal contraception? Or start prepping your own meals? It’s a good idea to seek student health services and nutrition advice, such as how to order healthy food from your dorm room or buy and cook your own meals if you live in an apartment.

Of course, even the best-laid plans can be derailed. Connie Pasek, 21, was diagnosed with UC two weeks before her 18th birthday. “It was like I got hit by a truck,” she says.

After unsuccessfully trying to treat her symptoms with medications that were available to children, Pasek transitioned to adult care, where she received one more medication that would hopefully save her colon.

Six months later, though, Pasek had to have her colon removed with J-pouch surgery. She took a year off before attending college to learn how to use the pouch, develop a bathroom routine, and understand how certain foods affected her. “I wanted to establish a new normal,” she says. Pasek is now a student at Marquette University in Milwaukee, Wisconsin.

Resources That Can Help You Manage Your UC as a Young Adult

It can be challenging to manage IBD on your own, especially if you’ve recently moved away from home. That’s something Dave learned when she first left for college. A review published in September 2022 in the Journal of Health and Social Sciences found that young adults transitioning into college face unique disease-related problems, including access to private bathrooms and acceptable food, transitioning to independent care, and dealing with the social stigma around their illness.

These were some of the issues that Dave was confronted with early on. During her freshman year, Dave lived in a single dorm room. Unfortunately, her residence was noisy with partiers, which made it difficult to adequately rest. Her room was also too far away from a restroom for someone with IBD.

“I could have requested more accommodations, but I didn’t do it, because it was all confusing, going somewhere new,” she says. Without a great environment to rest, Dave says she wasn’t as healthy as she could have been.

Don’t hesitate to check with your school’s office of disability. Before Pasek moved to college, she requested a dorm room with a private bathroom. The benefit, she says, was having a space of her own that was close enough to reach in the middle of the night.

You’ll need to reassess what you need to take care of yourself, Grossman says. That may mean figuring out how much sleep you need and learning what you can (and can’t) eat or drink, even if that differs from your friends’ sleeping habits and diets.

To make this transition easier, many large hospital centers that treat adult gastrointestinal (GI) patients also offer what’s called holistic care, including a full spectrum of doctors — physicians, dietitians, pharmacists, social workers, and psychologists — who can handle your needs, says Dave. (If you’re being treated in a large pediatric hospital right now, ask your doctor if the center has a transition-of-care initiative and how they will prepare you for making this change.)

“Most patients with well controlled UC can go to college and have the experience that they want to have, but they cannot tax their body in the same way,” says Grossman. If you’re worried about peer pressure, be prepared to have an open and honest conversation with others about what you’re comfortable sharing.

While Pasek is currently in remission, she still has to monitor what she eats and drinks. “My roommates come home at 10:30 p.m. and have ramen and don’t even think about it,” she says.

Dave is committed to helping other young adults transition to adult care. After graduating from Indiana University, Dave founded the Crohn’s and Colitis Young Adults Network, a program under Generation Patient (formerly Health Advocacy Summit) that offers an online platform for young people with IBD. She is currently the executive director of the organization.

“There is so much to navigating adulthood on its own,” says Dave. “To add a chronic condition to that makes it even more challenging.”

For additional resources, visit the Crohn’s & Colitis Foundation and Doc4me, an app that directs pediatric patients to GI specialists for adults in their area.