Crohn's disease - Kids & Teens

Coping with Crohn's disease?

Having Crohn's disease as a child can seem to affect nearly every aspect of your life sometimes. You may face challenges around school, sports and activities or telling your teachers, friends or other adults. You may also have feelings such as fear, denial, relief, guilt, anger or resentment. It usually helps to be able to talk about your feelings with someone else, such as a friend or close family member. A counsellor may also help if you are having trouble dealing with your illness and its impact on your life as well as your family.

"There will be good days, and there will be bad days. You can let yourself do less on the bad days, because you know there will be a good day again soon.'"  A.G., Greece

You may also have a range of emotional reactions to your diagnosis, such as fear, denial, relief, guilt, anger or resentment. All of these reactions are normal and usually in time, as you learn to cope with your illness, you will reach a level of understanding and acceptance. It is helpful to be able to talk through your feelings with someone else, such as a friend or close family member. Also consider speaking with your doctor about counselling if you find you need emotional support.

Patient support groups are also very helpful in providing emotional support as well as information about specific problems or issues you are facing. They can also help put you in touch with other children with Crohn's disease. To find a support group in your area, get in touch with EFCCA or visit their website.

There are several practical things you can do on a daily basis to help you cope. For example, if attacks of diarrhoea, pain or wind make being in public places difficult, some practical advance planning may help. Find out where the restrooms are at school, work, in restaurants, shopping areas, theatres and on public transportation ahead of time. You may find it helps to carry along extra underclothing or toilet paper. When going farther away from home, be sure to pack enough medicine, find out its generic (non-branded) name in case you run out or lose it, and the location of clinics and hospitals in the area you may be visiting. It is also a good idea to check with your doctor to make sure you are well before you go.

Remember that many other people with Crohn's disease face challenges similar to these every day, and that you're not alone. Friends and family can provide support for you, as well as support groups, who you can contact through EFCCA.

As you go about your daily life, try to stay involved in some of the same activities that you enjoyed before your diagnosis. Some days, you may not feel up to it. Other days, you may be able to achieve it easily, and will want to put more into it. Only you can decide what's right for you. It will help to follow your doctor's instructions and stay positive, and to play an active role in your care.

When telling others about your illness, it may be helpful to give them information or a list of resources where they can turn for answers to their questions. You can decide how much information you'd like to give someone else about IBD, and your illness. Some people may be curious and can deal with lots of detailed information in order to support you. For others, just some simple facts and practical points might be better.

For further practical advice, see Achieving more with IBD.

Another important thing you can do is learn all you can about your illness and be involved in your care. Working with your doctor to make decisions and address your concerns will give you back a feeling of control. It is most helpful if you talk openly and honestly about any concerns you may have, and ask questions along the way if there is something you don't understand or if an answer is unclear. For more information about working with your healthcare team in the management of your disease, see Your IBD Consultation.

Here are some things you can do to play an active role in the management of your illness: 

• Be involved in the proactive management of your own health every day

• Know when and how to take care of your general health

• Follow your management plan and take your medication

• Ask questions if you are concerned, and seek help if a problem arises

It is best to discuss any questions you may have about diet and your condition with your doctor and he or she may suggest that you see a nutritionist for additional guidance.

For more tips and resources to help you manage your IBD, please see Developing Your Management Plan. For more advice on managing stress, diet and travelling, please see Achieving more with IBD.