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CROHN'S DISEASE AND ULCERATIVE COLITIS

(A Guide for Teachers and Schools)

Young people of school age with Crohn's disease and ulcerative colitis (Chronic Inflammatory Bowel Disease) often have special problems requiring extra support, care and attention at school. This information is designed to help teachers understand the problems faced by these students at school, which may affect 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.

WHAT IS INFLAMMATORY BOWEL DISEASE?

Inflammatory Bowel Disease (IBD) is a descriptive term for two conditions, Crohn's disease (named after Dr. Crohn who first described the condition) and ulcerative colitis (literally, ulceration of the colon or large intestine or large bowel). There are some patients in whom the distinction between the different forms of IBD may be difficult in the early stages.

Ulcerative colitis affects the lining (mucosa) of the colon only, producing varying degrees of diarrhoea and bleeding from the bowel. Crohn's disease on the other hand can affect any part of the digestive system from mouth to anus, in particular the small intestine (small bowel) and colon.

IBD in children and adolescents is still relatively uncommon, but Crohn's disease is increasing. It is likely that most large schools will have at least one affected student.

The cause of IBD is still unknown despite extensive research. It is known that there is a genetic component that may run in families. Additional outside factors, such as infections may also play a part. The conditions are not considered to be psychosomatic or caused by stress, pollution, diet or lifestyle.

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


WHAT ARE THE SYMPTOMS AND SIGNS?

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 such as; abdominal pain, diarrhoea, vomiting and weight loss, or may be less obvious such as; 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 people 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 doctor visits, 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.

WHAT ABOUT 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 or prednisone. Side-effects of this treatment include an increase in appetite, weight gain (especially on 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.

Various other medications are likely to be prescribed and special arrangements may be needed for tablets to be taken at school.

In a minority of children and adolescents, surgery may be required to deal with severe disease or complications.

WHAT IS 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 distress.

Teenagers particularly, loathe these effects and will strongly resist going back on cortisone for these reasons. Loss of school time, failing performance, missing out on activities and sport may add further 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 the cause of considerable anxiety and may lead to school refusal. Arrangements should be made whereby the student can 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 may be a way of involving the class.

WHAT ABOUT MEALS AND SPECIAL DIETS?

In general, there are no special dietary restrictions and a normal diet is to be encouraged. In some cases certain changes may need to be made or certain foods avoided under the direction of the student's doctor or dietitian. Loss of appetite may occur if the disease is active and 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 lack of available toilets may be distressing and as a result the student may want to opt out of an activity. Simple measures like arranging an aisle seat in the theatre 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 programmes may need to be worked out to enable the student to participate to the fullest.

WHAT ABOUT ABSENTEEISM AND HOSPITALISATION?

Students may be absent for short periods of time because of illness or doctors' visits, or 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.

WHAT ABOUT 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, eg. armed forces, professional sport, ballet etc.

Crohn's disease and ulcerative colitis are chronic conditions which 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, that they are not caused or exacerbated by emotional factors and that they are not caused by diet.

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

AUSTRALIAN GASTROENTEROLOGY INSTITUTE

The Australian Gastroenterology Institute (AGI) is an educational body committed to promoting better health in the Australian community by reducing illness and premature death from all forms of gastrointestinal and liver disease, through educational and community service programmes. Educational activities are directed towards the public at large, the government, the medical profession and other related health professionals, and specialists, surgeons and scientists within the discipline of gastroenterology.

The AGI is a voluntary, non-profit organisation established under the aegis of the Gastroenterological Society of Australia.

Since its establishment in 1990 the AGI has developed programmes to improve community awareness and understanding of important problems of digestive health including Hepatitis C, Guidelines for Screening Colorectal Cancer, Haemochromatosis, Oesophageal Reflux, Irritable Bowel Syndrome, Women and Alcohol, NSAIDs and the Upper Gut plus many more topics in the pipeline. Seminars for General Practitioners have been held and will continue to be an important part of the AGI educational programme. For further information about the AGI and its programmes please contact:

The Administrative Officer,

Australian Gastroenterology Institute

145 Macquarie Street, Sydney, NSW 2001

Tel: (02) 9256 5454, Fax: (02) 9241 4586

THE AUSTRALIAN CROHN'S & COLITIS ASSOCIATION INC. (A.C.C.A.)

The association was established in 1985 by people who have IBD or have a family member affected. It is a voluntary, non-profit organisation committed to its members in providing and implementing services to assist members' needs.

Services include: promoting self help, advice on coping, arranging contact with others who have IBD, producing and distributing educational material, conducting educational and support group meetings, fundraising for research and increasing public awareness.

ACCA is also a "resource" centre for doctors, professionals, paramedics, patients and the general public.

Educational booklets available include: IBD and Drugs, Nutrition, How to Cope, Glossary of Terms, Personal Relationships. Available also are a variety of leaflets on various IBD topics, audios, videos, newsletters.

Membership is open to anyone with IBD, or for those interested in Inflammatory Bowel Disease, whether professionally or otherwise.

This is a non-profit organisation and donations over $2 are tax deductible. For further information or details on your State A.C.C.A. branch contact:

National Office, A.C.C.A. Inc.,

PO Box 201 Mooroolbark, Vic. 3138

Tel(03) 9726 9008, Fax: (03) 9726 9914