Tom’s* story
From a mother’s perspective
April 2005
Seven-year old Tom has suffered from chronic constipation and faecal impaction since infancy. After suffering three years of unsuccessful interventions and medical procedures, Tom’s bowels are now kept clear with a combination of MOVICOL Paediatric Plain and Sennokot®. While we remain concerned for Tom’s future, this treatment moved Tom on from being a severely impacted and quite poorly child to a happy and well child, albeit one who remains faecally incontinent.
When did you first notice that Tom had a problem with his bowels?
Tom’s problems started when he was a baby. What started as a problem with constipation has resulted in Tom having a dysfunctional bowel which seems to be the result of poor gut motility.
Faeces built up in his colon (faecal loading) and caused it to stretch causing a mega colon, a mega rectum and paradoxical contractions of the sphincter muscle, all of which have compounded the original problem.
What impact have Tom’s bowel problems had on him?
Tom has had to cope with severe stomach ache, vomiting and constant overflow soiling. He has had a poor appetite, disturbed sleep patterns, and has been prone to severe temper tantrums as a result of feeling so unwell.
Tom has endured a range of interventions including multiple medications, three x-rays, a gut transit study and a number of failed enemas under sedation.
What impact have Tom’s bowel problems had on the family?
We have learnt not to be embarrassed when our child poos or is sick in public or throws an enormous tantrum because he is feeling poorly. We have learnt to keep things in perspective, knowing that Tom’s condition is not life threatening. We now know this is a long term problem and we accept there are no magic solutions.
We have become experts on childhood constipation and we have had to become advocates on Tom’s behalf, taking over his case management from the professionals.
One fairly typical example occurred on my 46th birthday last year. We had been disturbed in the night by one of our children who needed his nappy changing and was subsequently sick.
With an older child at school, we decided to have a ’birthday breakfast’ at a local garden centre - this meant that we could buy Tom a goldfish for his little aquarium at home. Whilst in the pet shop Tom complained of needing to be changed saying, "the poo has gone down my leg". In fact it had gone down his leg and up his back, all over his trousers, socks and shoes and there was a puddle of poo on the floor!
My partner managed to get a distressed child out to the car where he changed Tom on the back seat. After reassuring Tom that no one was angry with him, we went back into the shop to buy the fish, with Tom barefooted as we didn’t have a spare pair of shoes!
Later in the day we went out for a birthday tea. There wasn’t an option to go out without the children, as we were unable to find a babysitter. In fact my partner and I had only been out twice in two years on our own as it was difficult to find somebody who would happily change Tom’s bottom or clean up sick.
However, the birthday tea ended like the birthday breakfast, with another change of clothes and Tom again distressed. This time he hadn’t pooed but thrown up all over the table and the floor of the café.
Which drug treatments has Tom been prescribed?
Tom started treatment with MOVICOL Paediatric Plain in 2003. This really improved the situation. Tom became both physically and emotionally a happier and healthier child. He started school and started to make excellent progress, albeit with support.
After nearly three years of unsuccessful interventions, this treatment was finally successful in clearing Tom’s bowel.
In order to keep his bowels clear, Tom was prescribed a combination of MOVICOL Paediatric Plain and senna (Sennokot).
Tom reimpacted following the use of another medicine suggested by the consultant we are under in London. We had been reluctant to change his medication as it had been the only one that he had tolerated well and had worked. Tom vomited on the changed medication and re-impacted. We achieved bowel clearance again and he has remained on the combination of MOVICOL Paediatric Plain and Sennokot ever since.
Tom has moved on from being a severely impacted and quite poorly child for a couple of years to a well child albeit one who remains faecally incontinent. This was the first medicine Tom tolerated without vomiting on higher doses and without tummy ache. He had also been reluctant to take other medicines because of their taste and the fact they made him feel poorly.
What does the future hold for Tom?
We had been led to believe continence would be achieved once Tom’s bowel had been cleared and we maintained a regular toileting programme using an adequate dose of laxatives. However, this has not been the case with Tom and we don't know why.
Tom is due to be admitted into St Thomas’ hospital for a series of bowel tests and we are giving some thought to him being involved in a trial for Botox injections into the sphincter muscle. However we are not very optimistic that this will move us on very far in the near future as a result of the catalogue of previous failed interventions.
Although we probably have a long way to go before Tom becomes faecally continent, treatment with MOVICOL Paediatric Plain and Sennokot has made Tom into a well child from being so unwell before.
This has made a huge difference to our lives although we remain concerned for Tom’s future due to his continuing incontinence and so far no positive prognosis.
We look forward to the day when we can take our two boys swimming together, where they can run on the beach and into the sea without Tom needing to be changed or embarrassed in front of other people, when we no longer have to leave the house with sufficient supplies to ’march on Moscow’: and when Tom can happily go for a visit to a friends without us, his parents, in tow, just in case he needs his bottom changing.
*NOTE: Tom is not the child's real name - it has been changed to protect his identity