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Effects on the Individual

Children with chronic constipation and soiling present with complex management issues involving both physical and psychological factors. Young people with a diagnosis of Slow Transit Constipation (STC) present even greater challenges. STC is a recently discovered condition where children are born with a neuronal abnormality/s of their colon which impacts on the peristalsis of stool (poo) passing through the colon. There is no cure but effective integrated management  may involve a paediatrician, surgeon, continence nurse, physiotherapist and parent educator; all having expertise in managing these children. Management needs to involve families, carers and often school or kindergarten staff in addition to sensitive and effective communication with the individual child. Those children who have already had several years of unremitting symptoms despite treatment with laxatives and behavioural programs present even greater challenges.  Most children diagnosed with STC are in this situation.

Early diagnosis is possible; should a newborn’s first bowel movement be delayed for 24 hours or more a doctor might investigate this delay further. Early recognition and prevention should be the aim of everyone in contact with children who soil, in particular a young person with STC. The child and all others involved in their care need to understand that STC is a neuromuscular condition. Normally, the nerves communicate with muscle fibres by releasing neurotransmitters which are picked up by receptors in muscle tissue resulting in a muscle contraction. Children with STC may have abnormal neurotransmitters in the muscles of the intestinal wall or they might have abnormal nerve cells in the bowel.

Understanding this physiology helps to ensure there is empathetic and clear communication between all the  people involved; the child, their family and carers, their teachers, their extended family and friends. Maintenance of privacy and discretion for the child is important. In school, for example having  systems set in place for ease of access to bathrooms and assistance as necessary without drawing attention to the soiling can transform a child’s experience. If peer relationships have become very difficult a chance to ‘start afresh’ with peers in a club or hobby group may be helpful. Care needs to be taken in selecting the group and    ensuring that there is sufficient communication with the adults involved to avoid any misunderstandings. Counselling and psychological services can often be an important additional treatment. Good communication between medical advisors and counsellors is likely to increase the success rate of any treatment.

Generally, children with this condition may live a very active life despite their intrusive treatment regime, which may include medication to help move the bowels, regular enemas or interferential electical stimulation therapy which may reduce the need for enemas or surgery. 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:

Thomas 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. Thomas 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. Thomas 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

Story Three – A Mother’s story:

I have read the stories from the children’s point of view, so now I thought I would share a mum’s point of view.

My eldest son who is now 12 has NID and got diagnosed at the age of 4. He has had around 10 operations, a illeostomy twice over and now is coping by having “washouts” through his appendicostomy. He is embarrassed from all his scarring and won’t let anyone see them. He has coped with the disease very well. He too once used to hide his soiled underwear and act out as he did not like having the “washouts”, a very heart breaking few years of our lives.

To be told by doctors that I was a lazy mum for not toilet training him properly was a very low point in my life, I felt so cruel making him sit on the toilet for sometimes an hour, begging him to try and poo.

Then came the teasing from the pre-school kids about him being smelly. I tried talking to his teachers to explain that I didn’t know why he was soiling his pants (sometimes up to 10 times a day). In the end I was asked if I would mind taking him our of pre-school until he was “fully toilet trained”.

It was not until 6 months after that, we got his diagnosis. We had tried the laxatives for nearly 12 months, using every known laxative on the market. Nothing was helping, so when he was 4 we decided to have the illeostomy.

My husband and I decided that we would try for another child and we were blessed with having twin daughters. From the moment they arrived I kept a very close eye on their bowel movements. Most new mums can’t wait for their baby to smile or sit up. Me, I was watching and waiting for them to pass a movement. Our eldest twin C did not pass her first bowel movement for 7 days. My heart sank, and knew it was not a good sign. Our youngest twin A, did not pass her first bowel movement for 6 days. As they were 8 weeks premmie the nurses were trying to keep my hopes up by saying, maybe its because of them being premature. I wasn’t prepared to go through the taunts from the doctors again, so I keep a diary of their motions.

At about 2 years of age, Ii started the laxatives. We kept them on them for 12 months. In the end, it was affecting them at pre-school. The constant soiling was getting uncontrollable. I thank god every day for having the best day care mum on the planet, who did not say a word for their soiling. It was getting around 10 pairs of undies each a day. C the older twin had chronic constipation a little worse so we decided to have her tested.

She underwent the Transit Study and from the results declaring her bowel was very delayed, we had the biopsy done. The results came back that she also had NID. I thought to myself, well I have done it once before, I can do it again.

Her surgeon and I decided we would give her the illeostomy as she was only 3 1/2, too young to cope with the “washouts”. Since the day of her operation she is a different child. She came out of her shell. Had a “normal” life back. We have never looked back.

The thought of having 2 children with it, I asked myself “what have I done to deserve this”. All parents ask that when they are feeling low. I told myself, it could be worse.

It’s now been 6 months since C had her illeostomy, and I wanted to get answers about A’s chronic constipation. We had the same tests, transit study and then the biopsy. Her diagnosis was she too had NID.

My world fell down right in front of me, how could this be, 3 children out of 4 with this disease. The twins are non identical, how could this be?

I often tell myself, I must have been blessed because I can cope with this. Don’t get me wrong, some days it’s all tears, some days, it’s anger and feeling sorry for myself. But the children were given this disease and they are strong, healthy and happy.

To all the parents who are going through this, keep your head held high and say to yourselves, I CAN DO ANYTHING!!

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