As you get older, you need to take more responsibility for managing your treatment. That way, by the time you are living on your own, you will be able to take full control of your medical life. If you can answer yes to the questions for your age group, you’re doing really well!
- Are you able to identify your medical team?
- Can you describe your GI condition?
- Can you name your medications, when you need to take them, and their side effects?
- Can you describe how your IBD affects your daily life, at home, in school, and in the outside world?
- Can you give the name and purpose of each of the medical tests you take?
- Do you share your information during appointments?
- Do you ask questions during appointments?
- Do you take responsibility for renewing prescriptions and keeping track of side effects?
- Can you describe what will happen if you don’t follow your treatment plan, including taking medication?
- Do you understand the impact of drinking alcohol and smoking on your IBD?
- Can you identify people and places you can turn to for support?
- Do you know how to contact your medical team in case of an emergency?
- Can you establish new medical and support arrangements with college or adult providers?
- Do you make your own medical appointments with providers?
- Do you know your health insurance information or carry your insurance card with you at all times
Transitioning to Adult Care
Here are some resources for you as you make the transition to adult care:
- IBD University is an online resource portal with tips and info to help you transition
- "Navigating Independence" is a podcast that highlights key points about transitioning
- Transition of Care Checklist [PDF]
- Managing IBD as a Young Adult Fact Sheet [PDF]
College students can also get accommodations. The Americans with Disabilities Act (ADA) prohibits colleges, universities, and trade schools from discriminating against students with a disability. You must request these accommodations, submit acceptable proof of having a disability, and meet with the proper people to determine which accommodations will apply to you. In college, these accommodations can also apply to dorm life, not just to the classroom. They might include modifications to testing, seating, absences, and a private dorm room or bathroom. Learn more about the Americans with Disabilities Act.
CCFA Campus Connection is an online resource for students with IBD on a college campus that provides resources for living and coping with IBD, as well as an opportunity to connect with others on campuses across the country.
If you are looking for a job, you should consider yourself just another job applicant. Don’t discuss your IBD in your interview. Your interview should focus on your qualifications and suitability for the job. After you land the job, are doing it well, and are through the probationary period, then discuss your need for any specific work accommodations. ADA requires that employers provide reasonable modifications, like the frequent use of a restroom or flexible time off for treatments and appointments.
Smoking carries many health risks, including lung cancer and heart disease. Also, smoking can make IBD symptoms worse. Smoking cigarettes can trigger flares. People with Crohn’s disease who smoke tend to have more recurrences of their disease, more frequent need for surgery, and a greater need for immune-system-suppressing medications. So don’t get started, or get help to stop.
Alcohol affects each IBD patient differently. The use or abuse of alcohol or other drugs, either illicit or over-the-counter, can have damaging effects on your GI tract, including your liver, and may interfere with your medications. Discuss the use of alcohol with your doctor or health care provider.
General Health Care Maintenance
It is important to monitor your health now and into adulthood. While working with your health care provider for your IBD issues, also remember to speak with your pediatrician about other important issues, including:
Vaccinations: Kids and teens with IBD should generally follow the same vaccination schedules as the general pediatric population. People on immunomodulators and biologic therapy should generally avoid live virus vaccines. Be sure you or your parents ask your health care provider about flu shots, HPV, and other immunizations.
Oral health: Among symptoms of IBD outside the GI tract are ulcers in the mouth, also known as canker sores. These may be caused by the IBD itself, or they might be a secondary symptom due to nutritional deficiencies. Although not serious, these ulcers can be quite painful. Mouth rinses and other topical treatments may help relieve the discomfort. Please remember to also see your dentist for routine dental care.
For a listing of additional things to keep an eye on in the future, check out CCFA’s General Healthcare Maintenance Fact Sheet.