Neuronal Intestinal Dysplasia (NID)

The Condition's Effects on the Child / Young Person

Effects on the individual

NID patients differ in age and sex, and their distress can take on many forms. The child may suffer from anxiety; feelings of sadness, depression and anger arise. Children may become obviously tearful and withdrawn; suicidal thoughts or attempts can occur. They can also ‘act out’ aggressively as a reflection of their feelings. They may also show poor concentration, attention or learning problems at school.

Generally, children with this condition may live a very active life despite their intrusive treatment regime. These children can often adjust to the illness and participate in the same activities as other children. Sporting activities are recommended although children with stomas or pouches need protection to prevent injury to the stoma site.

Effects on those close to the child / young person

Once diagnosis is obtained, parents can experience high levels of stress and anxiety. Not having a cure for the illness and watching the child suffer in pain often takes its toll. Stress also occurs when a child is not compliant with treatment due to their frustration with their illness. The added pressure of a chronically ill child can precipitate marriage/relationship difficulties.

Parents and siblings can feel a strong sense of hopelessness when treatment is unsuccessful. This often leaves families, friends and carers with feelings of frustration and depression. Siblings may feel excluded, isolated, deprived and resentful of the ill child who needs so much of their parents’ time.

"In their shoes" -
stories from children / young people with the condition

Story One:

T is a 10 year old with NID. He had seen doctors many times in the past and was treated with laxatives and frequent enemas. He found the treatment frightening, painful and difficult. He did not understand the nature of his bowel difficulties. He did not like taking about it.

He did his best to disguise his symptoms even from his family. JT hid his smelly soiled underwear in the back of his drawer, or under his bed ignoring the soiling. He spent a weekend away with friends and despite being in considerable pain and distress he did not let on about his problem but had to fob off endless question about why he was spending so much time in the bathroom. He had not told anyone there about his constipation and soiling.

His mother only became aware that his symptoms had worsened when eventually his soiling became so frequent he could no longer hide the evidence. JT then began receiving appropriate treatment and most importantly came to understand his condition better. He said at this time he had not told anyone initially because he did not want to have to go back to the doctors and be talked about and that he was afraid of the treatment especially the enemas. Discussing the nature of his bowel disorder in a way he could understand and involving him in the choice of treatments led to a much better outcome.

Story Two - Anita, 12:

“ I’ve missed heaps of school. Last year I was in hospital twenty times and each time for five or six days. I don’t really like school because I’m not very good at things, probably because I’ve missed so much, but I want to get there so I can learn. Some of the kids freak when they know I have a disease. They don’t want to come near me because they think they’ll catch something. They often call me names. One boy threw his cap in the bin because I’d touched it. He even told me he hoped I’d die from my disease. We’re doing a debate at school at the moment about whether or not products should be tested on animals. One of the boys said they shouldn’t test stuff on animals, they should test it on me instead. I get upset when people say things like that, but I try to laugh or ignore them. This kid asked me one day, ‘Are you going to die?’ I just said, ‘No’ and walked away.”

Story Two is an extract and is reproduced with permission from:
Cameron, Heather (ed.), “Different but the same. Young people talk about living with serious illness.”
Lothian, Port Melbourne, 1998

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