Stomach pains, lethargy, stunted growth, steroid-reliance, constant diarrhoea ... these alone are weighty burdens. So why must Crohn's-afflicted children also be misunderstood by their teachers and taunted by their classmates? Susannah Kirkman reports.
Ian Tilley was absent from school for six of the first ten days of this term. But that was nothing unusual for this 14-year-old pupil. Since he was diagnosed with Crohn's disease at the age of 11, he has missed 18 months of schooling.
When he finally received a statement of special educational needs, the educational psychologist estimated that, despite his intelligence, Ian was about five years behind his chronological age in some subjects.
"Ian is penalised twice - once by having a horrible illness and a second time by falling behind at school," says his mother Ruth Tilley. "This world is geared for the normal and healthy. If children can't fit the norm, there is no automatic safety net to catch them."
The Tilleys had to battle for 14 months and pay for a psychologist's assessment themselves to ensure their son would receive a statement.
Ian is one of a growing number of schoolchildren who have Crohn's disease. A 1993 study suggests that 2,150 British children suffer from Crohn's disease but Dr Scott Montgomery, an epidemiologist researching the disease at the Royal Free Hospital in London, says the true figure may now be nearer 6,000 as the illness is increasing so fast. There is likely to be at least one Crohn's-afflicted teenager in every large secondary school.
"Crohn's is rapidly becoming a disease we have to take more seriously," Dr Montgomery says. "Among 26-year-olds inflammatory bowel diseases like Crohn's are now more common than diabetes."
No one yet knows what causes Crohn's (first described in 1932) or how it causes the gastro-intestinal inflammation which can produce a variety of symptoms in sufferers, including stomach pain, flatulence, diarrhoea, vomiting, tiredness, joint pain, mouth ulceration and dramatic weight loss. One theory - that the relatively new measles vaccine may act as a trigger - has not yet been proved. Yet the age of onset of Crohn's seems to be dropping, from 15 or 16 to below 10.
Ruth Tilley thinks children with Crohn's often don't receive the sympathy and support they deserve at school because the embarrassing nature of the disease seems to block understanding. "Bowel disease is totally unacceptable for most children. Asthma and diabetes are much more "sympathetic" illnesses," she explains.
"Children with Crohn's easily become the butt of jokes. We had to move Ian from one school where he was bullied. There were gangs of boys peering at him over the top of cubicles when he was using the toilet."
Richard Driscoll, director of the National Association for Colitis and Crohn's Disease, says: "It is very hard for a child, particularly an adolescent, to have to cope with so much embarrassment. They dread the rush for a toilet and feeling different from their friends."
Another problem, he says, is that steroids commonly used to control the disease often have side effects which slow children's growth or make them balloon in weight. This can lead to even more teasing and bullying.
Ruth believes teachers are sometimes unsympathetic because the illness is not always obvious. "The biggest thing is trying to get staff to comprehend how Crohn's affects children's bodies. Because children may seem okay on the surface, it's easy to assume there's nothing wrong."
Ian is now one of the lucky ones. He gets support from a learning assistant who helps him make up the ground he loses when he is ill. She even comes to the house when he is too weak to come to school, as Crohn's can leave children feeling lethargic and debilitated.
Ian's school is also supportive; he has his own key to the disabled toilet, a "can't wait" card which entitles him to leave class whenever he needs to, and a special pass which means that he can cross the school quickly, without being challenged, on his way to the toilet.
There can still be problems. On the first day of term a new teacher refused Ian permission to go to the toilet. On another occasion, when he tried to explain that he had been too tired to finish his homework, the teacher told him not to watch so much television. "You have to start the battle all over again every time there's a new teacher," says Mrs Tilley.
"You have to keep repeating yourself," agrees Ro Johnson, whose 15 year-old son, also called Ian, has just had a gastrostomy so that he can be fed through his stomach.
Children with Crohn's sometimes need long stays in hospital, either for surgery to remove damaged parts of the intestine or to allow tube-feeding which will rest the bowel. Treatment can only be palliative; there is no cure for Crohn's, and symptoms may recur quite quickly after treatment.
"Most adults have no comprehension of how debilitating Crohn's is, so they don't understand its impact on the lives of children and their families, " says Mrs Johnson. After a two-year struggle to win a statement for her son, he now receives up to four hours of support a week. This is fine while he is well enough to attend school, but his frequent prolonged absences mean he soon falls behind again. As peripatetic teachers are strictly timetabled in the Johnsons' area, Ian is unlikely to receive any help while he is at home. His mother says: "This disease has no timetable. I can never say in advance when he is going to be well enough to work with a home tutor. When he's really poorly he will sleep between 15 and 18 hours a day."
For many children, there will be periods of remission when they can take a fuller part in school life. Such unpredictability means that schools need to be more flexible. Mrs Johnson wants schools to let the children themselves judge on a day-by-day basis if they feel fit enough to do sport, for instance. At the moment, she has to write in every week to ask if Ian can be excused from PE.
Older pupils should be allowed to manage their own medication if they want to, avoiding the embarrassment of continually asking adults for help. Apart from drugs, they may have to take a liquid elemental diet for extra nutrition. Even something as simple as getting water so that they can take their drugs can be unnecessarily difficult. In Mrs Johnson's experience, many schools only allow access to drinking water in the dining hall.
School meals can also present problems. Eight-year-old Laura Hamm has to go home for lunch. She cannot manage to eat it in the 15 minutes allowed at school.
"Children with Crohn's don't have much appetite, and Laura is very slow at eating. It takes her 45 minutes to manage a cold snack," explains her mother Karen Hamm. "Fortunately we live near the school, but I'm not able to take a job as I need to be here at lunchtimes."
Laura's illness is controlled by steroids, but she is smaller than other children her age, including her twin sister, Kirsty. "Now that she's in the juniors, the older girls will say 'Ah, isn't she cute?'. But she tells me 'I don't want to be cute!' " says Mrs Hamm. "She is a forceful person and will struggle on, even when she's not feeling well."
Laura's parents found the period before diagnosis most difficult. Crohn's is notoriously difficult to diagnose and some children suffer for many months before symptoms are recognised. After six months of unexplained tummy aches, the crunch came for the Hamms on Christmas Day, when Laura was too ill to open her presents. Her parents took her to hospital and Crohn's was finally diagnosed.
"The period waiting for the doctor to believe there's something wrong is incredibly frustrating," says Mrs Tilley. "At that stage you also have nothing to give the teachers to explain why your child is ill."
David White (not his real name) showed the first symptoms of Crohn's at boarding school. The whole school went down with a tummy bug, but David was the only pupil who didn't seem to recover. When he was too ill to return to school for six months, the school doctor told his parents that David's illness was psychosomatic.
"We were told he was ill because he didn't like school, but he didn't even enjoy the holiday we took him on," recalls Ann White, 15-year-old David's mother. "After Crohn's had finally been diagnosed, the school matron told us David had often complained of tummy ache, but he'd been given some paracetamol and a pat on the head and told that it would soon go away."
What are the educational prospects for children with Crohn's? A Scottish study showed they achieved higher than average grades in their exams, but a third had missed important exams or had been too unwell to prepare, resitting the papers later.
David White is about to do his GCSEs; his illness has been held in check by steroids and he has hardly missed any school for the last 18 months. Ian Tilley has been forced to aim for a lower level in GCSE English, as he is too exhausted to complete the coursework demanded by the top tier. Ian Johnson is about to start his GCSE course but sometimes gets very depressed about the future.
Richard Driscoll says teachers can offer valuable support to pupils with Crohn's by keeping in touch when they are too ill to come to school and reassuring children that they will be helped to catch up.
Sending work home for children to tackle when they feel well enough is helpful. Above all, schools need to look at individual needs.
"There can't be a set protocol because of the unpredictability of Crohn's. But if schools are prepared to be more flexible, pupils will stand a better chance of escaping significant educational disadvantage," says Mr Driscoll.
"More understanding of the physical and psychological effects could help teachers have a hugely positive impact on children's potential achievements and happiness."
When a Child Has Ulcerative Colitis or Crohn's ... How Teachers Can Help is now available. Send a 9"x 6" SAE to: The National Association for Colitis and Crohn's Disease (TES), 4 Beaumont House, Sutton Road, St Albans,Herts. AL1 5HH. Tel 01727 844296 or browse the Web site at www.nacc.org.uk.The Crohn's in Childhood Research Association funds research into the disease. For further information, contact: Parkgate House, 356 West Barnes Lane, Morspur Park, Surrey. KT3 6NB. Tel 0181-949 6209
Crohn's disease: a 'do and don't' guide for teachers
* Allow children to leave and return to the classroom discreetly
* Understand if a child arrives late for a lesson - he or she may have had to dash to the toilet on the way
* Allow extended deadlines for homework when necessary
* Try to be alert for bullying by other pupils
* Expect children to be comfortable using communal toilets
* Expect a child to attend a school trip if toilet facilities can't be guaranteed
* Rush to send a child home if they are not well. If they are allowed a rest or given a painkiller, they may be able to cope