Sarah's story My daughter Pip recently turned nine years old, a confident, and fun-loving girl who has had poo problems on and off since she was four. We had no idea about constipation when she started having ‘poo accidents’ and tummy ache, and thought it was just a phase, after all she had already successfully managed toilet training. Having no experience ourselves, we thought constipation was something you get when you are NOT pooing, and that passes after a few days. Seeing the GP When we did see the GP, he simply referred us straight to the Health Visitor. Apart from giving us Lactulose as a softener, she treated it as a behavioural problem and gave us sticker charts and a parenting book. I felt ashamed and didn’t bother her again. I messed about with Lactulose and reward charts for about a year while the soiling came and went. By the time we went back to the GP, life had become difficult. Pip would refuse to go to the toilet when prompted and then have an accident an hour later; at home, at school, on outings, in the car. We got into the habit of carrying spare clothes but remained frustrated – if only she would just go to the toilet when she needed it! At times, sadly, we told her off. Not a behavioural problem Looking on Mumsnet in desperation one night, a discussion pointed me to the NICE Guidelines on Soiling and Constipation. They state that soiling should never be initially treated as a behavioural problem but always as constipation and faecal impaction. Wow – new information – poo can leak round the sides of a blockage! We went to a different GP, armed with the NICE guidance (I bet they love that!) to ask for laxative medication, but instead got a referral to the hospital. It was a further two months before we would get any laxatives. The Bristol Stool Chart It took about six months to get rid of the blockage because they started her on a cautiously low dose, and then she kept getting bunged up again. Over the next two years we saw four different doctors and were passed between outpatients and the day ward. A year into it, we found out there was a specialist constipation nurse who we hadn’t been told about. She brought the Bristol Stool Chart into our lives – basic information that we really should have had earlier, together with toileting techniques. Initially she was helpful but one day when I phoned her with questions about the Movicol dose she said impatiently: ‘You’re just going to have to manage this, Mum, you should be able to tell from the smell of the poo, and there are many children in a much worse state that I need to deal with!’ I was getting worried – if we didn’t sort this soon, Pip would be coming up to the age when this could become socially stigmatising at school. Exhaustion and frustration With no hospital follow-up appointment in sight, I ranted at an innocent hospital receptionist: ‘Will Somebody Please Tell Me Who on Earth is Looking After My Six Year Old?!’ We finally got to see the Consultant Paediatrician, and he prescribed sodium picosulfate, another laxative to get the bowel moving more effectively. The impact on family life went beyond the mammoth task of laundry and the practicalities of dealing with accidents, past the daily battle of medication and toilet-time, and affected Pip’s mood and emotions. It left me exhausted and frustrated and it became the only thing we talked about. One day I sat in the middle of my kitchen floor surrounded by laundry from bowel and bladder incontinence and cried. Turning a corner We turned a positive corner when we found the book ‘Sneaky Poo’ and liked the approach which removes any ‘fault’ from the child and places it on the character Sneaky Poo who tries to catch out the child. The child uses their skills and family support to defeat Sneaky Poo and send him down the toilet where he belongs. We also saw an Occupational Therapist in the Child and Adolescent Mental Health Services (CAMHS) team who gave us practical and positive strategies, and signposted us to the School Nurse for help with our problems getting school to supervise the drinking of water. We found out about the Enuresis nurse through a friend at a party who knew they could loan me the Malem bedwetting alarm, which I had seen on the ERIC website. It worked, thank goodness – finally some good news for my little girl. I have had to push for every single intervention we’ve received, making two formal complaints to the hospital and one to school on the way. At one point a good friend – who saw the Consultant through her work and was concerned about our lack of progress – had a quiet word in his ear to speed our next appointment up. I was grateful for this, but also resentful of the need for it. My daughter has had to talk to so many different people (11 doctors and nurses) that she now refuses to speak at medical appointments at all. We have grown tired of being told about dietary fibre and fruit at every appointment even though we already had a healthy vegetarian diet and our diet did not cause this. It’s been lonely for me as a parent with nobody to talk to who is dealing with a similar condition. Where are we now? We’ve reduced from 10 sachets of movicol to two sachets a day and still use sodium picosulfate, which we aim to reduce very gradually. The soiling is smaller although still daily. Our toilet routine is established. We talk and laugh about poo but not very often now. We ignore pants and wash without mention. We still feel hopeful that things could return to normal in the next year, but have been made aware that it could be ongoing. We still have no support in between Consultant appointments, which are every nine months. Pip struggles with holidays and long car journeys, but managed a Brownie Pack holiday and a sleepover. She wishes she didn’t have a poo problem and doesn’t like to talk about it. She still needs a lot of reassurance and extra love and attention. We don’t know what caused the constipation to start with – insufficient fluids, too busy to stop playing to go to the toilet, antibiotics, naturally slow bowel transit-time? It can take as little as one off-putting or distressing occasion of a hard poo, delaying the child going to the loo next time they need it, for the cycle to start. If it had been properly treated earlier on, would the bowel be less stretched, the nerves less damaged and the withholding behaviour less ingrained? We just don’t know. I want to move forward by supporting ERIC’s campaigning for talking about poo and wee more openly, earlier identification of the signs of functional constipation, and better coordinated and child-centred services. Positive results Writing this blog has given me the confidence to finally contact the local health trust (Clinical Commissioning Group as they are now!) about the poor care we received during the last four to five years, but I have done this in a positive way in asking them what they are doing to improve care pathways and staff training and awareness of constipation. As a result of my email, they invited me to speak to the Stockton and Hartlepool CCG Governance meeting as they have a slot for the ‘Patient Story’ which gives clinicians and managers an insight into the patient experience. Read Sarah's blog post 'The things I wish I'd known about childhood constipation'. Read more parents' stories.