Sneha Dave (22 years old) was diagnosed with ulcerative Colitis (UC). At the age of 6, Sneha Dave was diagnosed with ulcerative colitis (UC). She was unable to attend school more than one or two times per week due to the chronic inflammatory intestinal bowel disease (IBD).
Dave weighed only 60 pounds by the ninth grade and her mother was her primary caregiver.
Dave claims that he had no real social interactions with anyone other than my mom and the hospital staff.
Dave’s health improved following J-pouch Surgery. This is a procedure in which the colon and rectum of a person are removed and an inner pouch is made with the end small intestine. But at the end high school, Dave found herself facing another obstacle: turning 18.
Young people with IBD must enter legal adulthood. This means that they have to transition from pediatric care to adult care. It can be difficult logistically and emotional. A less smooth transition can make it more difficult for someone with chronic IBD to manage their disease.
Dave was suddenly given the task of finding a new doctor, navigating insurance policies, and moving into college with new friends.
Management of IBD: From Childhood to Adulthood
According to the Crohn’s & Colitis Foundation, about 5 percent of all IBD cases in America are children. IBD in children under 20 years old is more common than in adults.
In ideal circumstances, the transition from pediatric to adult care should be made early and often.
Andrew Grossman MD, a pediatric gastroenterologist from Children’s Hospital Philadelphia, believes it’s essential. He encourages teens, as they transition from adolescence to young adulthood, not to take over their medical care.
While it is not a good idea for you to begin negotiating with insurance companies as young as 12, it is a good idea to take a more active role in your own care as you age. Dr. Grossman suggests that you start by learning more about UC. Being able to describe the disease is a good sign. Also, learn how to talk to your doctor during your appointments and not rely on your parents to do so.
Grossman suggests that you learn to make your own appointments and schedule your doctor’s visits as you move towards adulthood. If you are able to drive, you might even be able to drive your parent (or you, if they’re with you) to the appointment.
He says, “Adolescents go from very communicative care, where providers act like a unit with parents, to a relationship among the patient and provider.” Parents are no longer involved in their child’s medical care after age 18, which can be difficult.
How teens can take control of their UC
It’s never too early to discuss a plan with your doctor and caregivers if you are a young patient suffering from UC. These are some steps that you might consider.
- Find a new adult physician. Look for a provider within your area. If you are moving to another location to study or get a job, look for one in the new area. Grossman suggests that you ask your doctor and your peers for recommendations.
- Get to know your insurance. If you don’t have any insurance, learn how to contact your insurance company to get your card. Learn about any insurance rules you might need to follow if you receive infusions from another state.
- Do some preparation work. Write down any questions you may have for your doctor before you go to your appointment. Ask questions once you are face-to-face. You can also practice at home with a trusted adult.
- Learn how to take notes during appointments. You can refer back to your doctor if you have questions if you take notes of important information.
- Learn how to use an electronic portal. Grossman suggests that you log into your patient portal to access the electronic medical records.
- Learn how to contact your doctor. It is a smart idea to find out the best way to contact your doctor. This could be by calling the office, scheduling an appointment online, or submitting a request through the electronic systems.
- You should establish a schedule for your medication (or infusions). A schedule can help you keep track of your treatment. Another tip: Plan what you will do when you are away from your apartment or dorm.
- Also, consider your other health requirements. Do you think you will need to begin family planning? You can also start cooking your own meals. If you are living in an apartment, it is a smart idea to get student health services.
Even the best plans can sometimes be thrown off course. Connie Pasek (21 years old) was diagnosed with UC just two weeks before she turned 18. She says, “It was almost like I was hit by a truck.”
Pasek was unsuccessful in treating her symptoms with medication available for children. She moved to adult care where she was given one more medication that could save her colon.
Six months later, Pasek needed to have her colon removed. Before she could go to college, Pasek took a year off to learn how to use the pouch and how certain foods affect her. She says, “I wanted to create a new norm.” Pasek is now studying at Marquette University, Milwaukee, Wisconsin.
Here are some resources that can help you manage your UC as a young adult
IBD can be difficult to manage on your own, especially when you have recently moved. Dave experienced this when she went off to college.
Dave lived in one room during her freshman year. Her new home was full of partygoers, making it difficult for her to rest properly. A bathroom was too far from her room for someone with IBD.
She says, “I could have requested additional accommodations, but it was too confusing to go somewhere new.” Dave said that she was not as healthy without a restful environment.
Do not hesitate to contact your school’s disability office. Pasek requested a private bathroom in her dorm before she moved to college. Pasek says that having her own space was a benefit.
Grossman suggests that you will need to reevaluate your needs and take care of yourself. Grossman suggests that you determine how much sleep you require and learn what foods and drinks you can and can’t eat and drink. This is even more important than what your friends do.
Dave says that many hospitals that treat adult GI patients offer holistic care. This includes a wide range of doctors, such as physicians, psychologists, dietitians and pharmacists. If you are currently being treated at a large pediatric hospital, ask your doctor about a transitions-of-care initiative. This will help you prepare for the change.
Grossman says that most patients who have well-controlled UC are able to go to college and have the experiences they desire, but their bodies cannot be taxed in the same manner. Be open to having a conversation with others about your feelings and concerns about peer pressure.
Pasek is currently in remission but she must still be careful about what she eats. She says that her roommates return home at 10:30 p.m. to eat ramen. They don’t even think about the food.
Dave is dedicated to supporting other young adults in their transition to adult care. Dave, who graduated from Indiana University in 2004, founded the Crohn’s and Colitis Young Adults Network. This program is a partnership with Health Advocacy Summit. It offers an online platform to young people with IBD. She currently serves as the organization’s executive director.
Dave says that there is so much to adulthood. It’s even more difficult to add a chronic condition.
You can also visit Doc4Me and the Crohn’s & Colitis Foundation for additional resources. This app connects children to local adult GI specialists.