Do many children have IBD?
Both UC and CD are rare in early childhood but occur with increasing frequency as the teens' approach. The commonest age of onset is the late teenage period or early 20's. IBD is the most common long-term gastrointestinal disease in childhood and adolescence. About 1/3 of people with IBD have their onset before they reach adulthood. Males and females are affected almost equally.
The number of patients with CD in Northern Europe and North America has been increasing over the last 30 years whereas the occurrence of ulcerative colitis has remained unchanged or decreased. The reasons for these changes in disease are unknown.
What causes inflammatory bowel disease?
The actual cause of IBD is not known. There are many doctors and scientists actively working to find the cause, improve treatments and maybe, one day find a cure. What we do understand is that the immune system that normally works to protect us against infection in the intestine appears to be overactive and this overactivity causes inflammation.
What are the symptoms of IBD?
Before the diagnosis of IBD is made you may have suffered with a variety of symptoms such as:
- Tummy pain
- Diarrhoea which may have had blood or mucus in it
- Loss of appetite
- Weight loss and poor growth
- Tiredness and lack of energy
The symptoms vary from person to person but once treatment has started these symptoms should improve within a few weeks.
Can inflammatory bowel disease ever be cured?
Although there is no cure at the moment for UC or CD, with medicines and nutrition it is possible to keep the disease under control so that you can lead an active and normal life. UC can be 'cured by removing the entire large intestine.
Do certain foods cause IBD?
Is there a special diet that I need to take when I am a diagnosed with IBD?
Usually there is no need to go on a special diet, but sometimes certain foods may not agree with you. If some foods cause worsening of symptoms, you should avoid them.
Some children and young people with IBD, even though they feel hungry, lose their appetite when a full meal is put in front of them. In this case it is helpful to eat smaller amounts of food more often. Even though you may be feeling unwell, it is important that you try to eat. It may be a good time to ask for your favourite foods as long as they are nourishing.
Can I play sports and go to stay in friends' houses?
If your disease is active you may get tired easily and not be as active as you would like to be. However, you should be able to lead a normal life and enjoy all the activities that your friends enjoy. There are a number of famous people who have IBD. One has even won Olympic medals. There is also a famous pop star who has CD. You may find that some people will treat you differently when they know you have IBD. It may help if you explain to them what IBD is and that sometimes you get tired easily and that when your disease is in remission and you feel well, you can join in normal activities.
Can I go on holidays?
You should have no problems going on holidays. When travelling, make sure that you have your medicines in your hand luggage, in case your bags get mislaid. You should also bring an extra supply of the medicines, in case of delays. It is also a good idea to take a European Health insurance card in addition to travel insurance and also a copy of your prescription. While on holidays if you become unwell you should contact the nearest medical centre and if necessary they will contact one of the doctors in the nearest hospital.
If you are eating out, make sure to eat food that is well cooked and drink only bottled water when abroad. Avoid ice in drinks as much as possible. If you get diarrhoea it may be simply due to change of diet. But if symptoms worsen contact the local doctor.
What should I tell people?
It is not essential that you tell people that you have IBD. It is not contagious so others can not get it from you. However you may find it very helpful to tell some of your close friends that you have been diagnosed with IBD. That way it is easier for them to understand why you're well at times, but at other times you have to rest or use the bathroom a lot and take regular medications. A lot of children with IBD have said that telling their friends has been very helpful and that their friends have been very supportive.
Some people around you including your family, friends or teacher may become overprotective when they know you have IBD. So it is important that you explain to them that you can participate in all the activities that they are doing and that you will let them know if you feel unable to take part in certain activities. That way they know you are in control of your disease.
Who will help me to get better?
The team in the hospital is made up of:
Doctors: Your care will be managed primarily by one of the consultants. However, the consultants share the responsibilities for caring for patients. You may meet other consultants on some visits. The consultants are supported by a team of younger doctors (Registrars and House Officers). This team typically changes every six months.
The doctors are among the first people you will meet when you have been diagnosed with IBD and they will explain to you the nature of the disease and the treatment options available. They will also meet you at all your visits to the hospital and will be able to assess if the treatments that you are on, are working effectively or not.
GI Clinical Nurse Specialist: The Clinical Nurse Specialist works very closely with the medical team and will also be present on the day of diagnosis. He/she will help explain the nature of the illness to you and how all the treatment options will help to make you better. He/she will be available as a link' person between you and the medical team so you will be able to phone them if you are worried about anything or if you do not feel well. He/she will liaise with the team of doctors, and if possible sort the problem out over the phone. He/she will also arrange for you to be seen in clinic, if this is necessary.
Dietician: The dietician will offer you advice on healthy eating and help make sure that you don't lose too much weight. He/she will also offer advice on supplements if this is necessary and may suggest foods to help you feel better.
Psychologist: The psychologist is available to all children diagnosed with BD. The psychologist is there to help you to get used to living with IBD, and he/she can offer support with ways to cope with the disease.
Pharmacist: The pharmacist makes sure that you get the correct medication to treat your disease.
What about my IBD when I get older?
Children and young adults are usually cared for in a children's hospital until the doctor feels they are ready for transfer to an adult centre. This is usually after leaving secondary school. The tema will try as much as possible to transfer care to a centre that is convenient to your home or college that you may be attending.
It may be a little daunting at first attending a new set of doctors, but the transition will be made as smooth as possible by clinic nurses in the new hospital. Your parents may find this change difficult also as they see you now taking full responsibility for your disease, and striving to become an independent person.
Lots of young people also worry about how their boyfriends or girlfriends will feel about the illness. Other adults have told us that in spite of their fears, it makes no real difference in close relationships. In both UC and CD, an acute flare up may have a temporary effect on a girl's period. Also during an acute flare up, if diarrhea is a problem the efficacy of the contraceptive pill may be affected. In this case other forms of contraception should be used. If you are pregnant, you will need to see a doctor to discuss your medication during this time.
Leading a normal life, enjoying all sports, going on holidays, pursing a career and having a family, is all possible with IBD.