Advice for Teens
IBD can make it difficult to lead a productive school life. The symptoms of active disease can cause pain and frequent trips to the toilet in the middle of class, as well as fatigue, which can make it difficult to concentrate. You may also need to miss school for medical appointments and,in cases of severe activity, due to hospitalisation.
Making life easier – tips
It helps to let your teachers and school administrators know what your current health is like, as they can help organise your work and assessments when things aren’t going so well (i.e., flare-up). Some might already be familiar with IBD but others not. Your doctor can help with this, too, by writing a letter to your school coordinator that explains your diagnosis and how it impacts you at school. If your IBD is not going well and you are spending a lot of time out of school, you may benefit from a distance learning arrangement where you can do your school work outside of the classroom. If your learning has been significantly impacted in your final years (i.e., 11 &12), you may be eligible for special consideration schemes. For more information, contact your state/territory tertiary admission centre.
The symptoms of your IBD may make you feel embarrassed and feel compelled to hide it from your friends. Disclosing your condition to your friends can help you feel less alone in dealing with it. You may also find that spending time with your friends is a helpful distraction when things are not going well. Remember, many people you encounter will have little or no understanding of what IBD is and how it affects people. Consider having this conversation with your close friends or giving them printed materials (e.g., information sheets, books) that explain the condition. There are also support groups and programs available that can connect you with other young people going through the same thing. See Crohn’s and Colitis Australia’s support page (https://www.crohnsandcolitis.com.au/find-support/) if you are in Australia, otherwise contact your local or national IBD association/organisation.
Transitioning to adult care
Depending on your age and when you were diagnosed, you may need to transition from a paediatric to an adult gastroenterologist. This can be challenging, particularly if you have known your paediatric doctor for many years. The dynamic of your consultation with your doctor will also change. Unlike in paediatric care, where many of your doctor’s questions were aimed at your parents, your doctor will now be working closely with you. You will gradually become more involved in managing your condition and making decisions in your treatment (e.g., making/attending appointments, managing medication changes). Although you will not be alone in this process, it helps to become more knowledgeable and involved in your treatment before the transition. Some things you might want to familiarise yourself with:
- What is my diagnosis? (e.g., Crohn’s disease – ileocolitis, ulcerative colitis – pancolitis)
- When was I diagnosed?
- Have I had any extra-intestinal issues before? (e.g., joint pain, mouth ulcers, skin problems)
- Have I had any complications before? (e.g., abscesses, fistulae)
- What medications have I been on?
- What are my current medications and dosages?
By its nature, IBD can be unpredictable and lead you to feel anxious about what the future holds. You may find that developing knowledge about your condition and taking responsibility for your own treatment reduces some of the feelings of uncertainty and instils a greater sense of control. Remember, this is not something that you are alone in –your doctor is there to support you through this process and can help answer any questions you may have.
It is not unusual for somebody with IBD to feel self-conscious about their body. The signs and symptoms of the condition (e.g., bloating/distention, significant weight loss) and side effects of treatment (e.g., steroids: weight gain, ‘moon face’) can cause changes in one’s body-image that can be difficult to ignore. Do not hesitate to communicate these feelings with family or friends. You may find that talking to someone gives you some comfort through reassurance and putting your symptoms into perspective. If your body-image concerns persist and are causing you significant distress, your doctor can help you address this through changes in your treatment or through mental health assistance (e.g., counselling, referral to a psychologist).