AUSTRALIAN
ASSOCIATION Inc.
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