Kids Health Info

Crohn's disease and ulcerative colitis - a guide for teachers and schools

  • School children with Crohn's disease and ulcerative colitis (chronic inflammatory bowel disease, or IBD) often have special problems and require extra support, care and attention at school. The information in this factsheet is designed to help teachers understand the problems faced by these students at school, how it may affect their academic performance, and their ability to take part in other activities. 

    Because these are chronic or recurring illnesses, there will inevitably be times when the student is away from school, or affected by symptoms or side-effects of the treatment while at school. The support and encouragement of teachers and the school community is vital to enable the students to develop their full academic and social potential. 

    People with IBD are not contagious and there is no risk to other students or staff.

    Signs and symptoms

    Crohn's disease and ulcerative colitis run fluctuating courses and for most of the time there will be few or minimal symptoms. Symptoms may vary with the type and extent of the disease. They may be very obvious, for example abdominal pain, diarrhoea, vomiting and weight loss; or may be less obvious, for example poor appetite, general tiredness, lack of stamina, general "unwellness" and depression, despite the outward appearance of being quite well. There may be symptoms relating to other parts of the body such as arthritis, skin and eye problems. Some patients may develop inflammation in and around the anus.

    These symptoms can interfere with concentration or performance in class work, homework, examinations, sport, excursions and other activities. There may be loss of actual school time due to illness, hospitalisation or visits to the doctor, as well as time at school spent in the sick bay or the toilet. Growth, pubertal development and sexual maturation may be delayed, leading children to appear smaller and younger than their peers. Poor nutritional intake is a major factor in this.

    Treatment 

    The mainstay of treatment is a type of cortisone (the body's own naturally occurring anti-inflammatory hormone), usually given in tablet form as prednisolone. Side-effects of this treatment include an increase in appetite, weight gain (especially around the face), increased tendency for pimples, mood swings, and sometimes difficulties with concentration and headaches. These effects gradually disappear as the dose is reduced over a period of months. Other initial treatment that may be used is exclusive enteral nutrition (EEN), a special formulation taken exclusively for a period of eight weeks orally or via a nasogastric tube (a flexible tube passed through the nose and into the stomach).

    With progression of the illness, other medications are likely to be prescribed and special arrangements may be needed for tablets to be taken at school. In a minority of young people, surgery may be required to deal with severe disease or complications.

    The impact of IBD on the student

    The effect of the illness and the side-effects of medication may be considerable. No child or teenager likes to be different or to have to take medication. A problem with "the bowels" may be particularly embarrassing. The effect on real and imagined body image with short stature, "moon face", pimples, etc. adds to the potential for distress. Teenagers are particularly sensitive about these effects and will often strongly resist going back on cortisone for these reasons. Loss of school time, falling performance, and missing out on activities and sport may add to the frustration and difficulties.

    The most difficult problem that students may have to deal with at school is the need to go to the toilet urgently and with little warning. The fear of this happening and being unable to go to the toilet easily may be a cause of considerable anxiety and can lead to school refusal. Arrangements should be made to enable the student to leave class quickly and with a minimum of fuss. To be questioned in front of classmates is embarrassing, and even a short delay may result in an accident. A system of codes or signals known to all involved teachers may be used, or the student should be given the freedom to leave class at any time if necessary. Most young people will respond maturely and not abuse the privilege. Special use of staff toilet facilities may be possible especially if the student facilities are a long way from the classroom. Above all, the students should feel confident that their special circumstances can be handled with discretion and understanding.

    Does the class need to know?

    This is something which should be discussed with the student and family. Peers and other teachers should have at least a degree of understanding about the nature of the problem to minimise feelings of isolation and risks of teasing. A "show and tell" session for younger children, or a science or health project for older students, may be ways of involving the class.

    Meals and special diets

    In general, there are no special dietary restrictions and a normal diet is to be encouraged unless the patient is prescribed EEN. This will be under the guidance of their doctor and dietician. Loss of appetite may occur if the disease is active, and this can result in inadequate nutritional intake.

    What about excursions, camps and sport? 

    Ideally, the student will be well enough to fully participate in all activities. At other times fear of pain, diarrhoea, embarrassing "tummy rumbles" or a lack of available toilets may be distressing and as a result the student may want to opt out of an activity. Simple measures such as arranging an aisle seat in the theatre, auditorium or on the bus should be considered.

    Sporting activities may be affected by abdominal pain, joint problems and general poor health but students should be encouraged to take part within their current limits. Some will push themselves too hard so as to not appear to be "quitting" in the eyes of their peers and need to be encouraged to "pace" themselves. 

    Teachers and supervisors need to understand that there will be better and worse days and to give the students the benefit of the doubt if they decide they are unable to participate on a particular day. There may be times when specific restrictions are imposed, for example after surgery. Individual programs may need to be worked out to enable the student to participate to their fullest. 

    Absenteeism and hospitalisation

    Students may be absent for short periods of time because of illness or visits to the doctor, or they may need to spend a few days or weeks in hospital. School work and assignments can be sent home or to the hospital, and visits and cards from classmates and teachers are appreciated to keep in touch both academically and socially.

    What to look out for at school

    For the most part, students with IBD will be well, able to participate fully and can be treated normally. It is unlikely that any emergencies will occur at school or that the teachers will be called on to provide any treatment or first aid. However, students, parents and teachers should have a clear plan of action and communication if problems do arise at school.

    Teachers should be aware that although students may appear to be well, they may have significant and fluctuating symptoms. Watch out for signs of tiredness and unhappiness and be prepared to discuss concerns with the parents if necessary.

    Vocational guidance and the future

    Crohn's disease and ulcerative colitis should present no long term barriers to achievement but some career aspirations might be unrealistic for some patients, e.g. the armed forces, professional sport, ballet etc.

    In summary

    Crohn's disease and ulcerative colitis are chronic conditions that vary in nature and severity in different young people and tend to run fluctuating courses. At present there is no cure, but medications are used to induce remissions and help relieve symptoms.

    It is not known what causes these diseases although genetic factors play a part. It is known, however, that they are not contagious diseases and that they are not caused or exacerbated by emotional factors.

    In some young people, IBD is mild and easily controlled; in others, control may be more difficult. Most affected students will be able to fully participate in school and social activities, but may need understanding and special consideration from teachers and peers in some circumstances. 

    Teachers should discuss potential problems and plans of action with students and their families. Although emergencies or severe symptoms are unlikely to arise at school, there should be clear lines of communication. It may be helpful for teachers and counsellors to talk to the doctor (usually a paediatric gastroenterologist) and other health professionals involved in the young person’s care.

    Key points to remember

    • Students with IBD are usually well, and can participate in all activities.
    • There does need to be a plan of action if students become unwell at school.
    • Teachers should be aware that although students may appear to be well, they may have significant and fluctuating symptoms. Watch out for signs of tiredness and unhappiness and be prepared to discuss concerns with the parents if necessary.

    More information

    Kids Health Info factsheet: Crohn's disease - an overview

    Kids Health Info factsheet: Crohn's disease and Exclusive Enteral Nutrition

    Kids Health Info factsheet: Ulcerative colitis - an overview

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Disclaimer
This information is intended to support, not replace, discussion with your doctor or healthcare professionals. The authors of these consumer health information handouts have made a considerable effort to ensure the information is accurate, up to date and easy to understand. The Royal Children's Hospital, Melbourne accepts no responsibility for any inaccuracies, information perceived as misleading, or the success of any treatment regimen detailed in these handouts. Information contained in the handouts is updated regularly and therefore you should always check you are referring to the most recent version of the handout. The onus is on you, the user, to ensure that you have downloaded the most up-to-date version of a consumer health information handout.