My 46th birthday last year was a fairly typical day in our family life. 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.
At first glance you might assume that Tom was a baby or toddler - why else would we go out with a bag of wipes, pull-ups and a change of clothes? In fact Tom was five years old. He had had problems with constipation since he was a baby. Tom is now six years old and the situation has improved. We have found a medication that has cleared Tom’s bowel without any side effects (such as severe stomach ache and vomiting) and Tom is both physically and emotionally a happier and healthier child. He has started school and is making excellent progress, albeit with support.
What started off with a ’problem with constipation’ has resulted in Tom having a dysfunctional bowel. This seems to be the result of poor gut motility that led to constipation as an infant. The resultant faecal loading has caused an enlarged colon, a mega rectum and paradoxical contractions of the sphincter muscle, all of which have compounded the original problem.
Tom has endured a range of interventions including multiple medications, three x-rays and a gut transit study, a number of failed enemas under sedation and an eventual referral to Dr. X, consultant paediatrician with an expertise in the field of childhood constipation. And during this time, for a period of three years, 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.
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. 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 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 and he is not shown in the photograph - it has been changed to protect his identity