Preparing for Adult Care
You may already be well on your way in preparing to manage your disease on your own, or perhaps there are some skills you need to improve. Remember to talk to your parent or guardian, and your doctor or healthcare team about what you can do to gain the skills you need for your journey with IBD as an adult. As Pete mentions in the video on the right, your openness with your doctor and medical team can go a long way.
What skills do I need?
Some important skills you should start working toward building include:
- Describing your disease
- Naming your medications and their side effects
- Taking medications on your own
- Knowing why medical tests are done
- Understanding the impact that drugs and alcohol can have on your body
- Voicing your needs at school
- Asking questions and talking directly to your doctor during appointments, without your parents' help
- Knowing your medical team and how to reach them
- Knowing your health insurance information
If Pete can do it, so can you! The infographic below shows some of the helpful skills you'll need for the IBD journey ahead.
Everyone is unique and can learn these skills at their own pace. Just remember to ask for help and support when you need it. Take our IBD Skills Quiz to learn how you can become better prepared for the journey ahead. You can even email yourself the results and share them with your doctor, parent, or guardian.
Additional Resources on Transitioning 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]
- Parent Discussion Guide [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. To learn more about the Americans with Disabilities Act, visit www.ada.gov.
The Crohn's & Colitis Foundation's Campus Connection website 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 the Foundation's General Healthcare Maintenance Fact Sheet.
Doc4me - New Mobile App to help patients find doctors as they transition to adult care
NASPGHAN and the NASPGHAN Foundation announce the launch of a new mobile app, Doc4me, to help you find a doctor as you transition to adult care.Through this app you can access:
- A search feature to help you locate an adult gastroenterologist near you
- A checklist to help you prepare for adult care
- Information on medications, nutrition, and living with IBD