Stories & News Stories Parents' stories Helen's story Our middle child of three is a gorgeous, lively five-year-old who doesn’t look out of place amongst her peers. But what you can’t see on the surface is what she has to cope with on a daily basis. Regular soiling accidents Onnee showed few signs of being ready to toilet train but when pre-school began to loom we felt it was time we tried. It took a few months before she was dry during the day, but daytime soiling was never mastered. Toilet training didn’t gain our full attention as Onnee had to undergo two surgeries whilst we were training her: one on her eyes for squints and one neuro surgery. She also had to go through numerous hospital appointments and general anaesthetics. We always tried our best to encourage her to use the toilet, but pooing accidents were a regular event. Onnee had daily bowel movements, so we never really thought anything of it. One afternoon after her neuro surgery she started screaming in pain. I was beside myself and called the doctor. I ended up on the phone in floods of tears. It was at this point we first heard the word ‘constipation’ used in connection with what was happening to Onnee. Movicol treatment and star charts The doctor prescribed a laxative called Movicol. Onnee had to have one sachet of Movicol per day for two weeks. She had a bowel movement the same day she started taking it and ‘normal’ life resumed. Health visitors gave me the usual advice about star charts when she pooed in the toilet and to send her to the toilet 10 minutes after each meal. We did this but the soiling continued. We couldn’t understand why she was soiling so often; was it for attention? Behavioural? After all, she managed it some days. Hitting brick walls We were told we couldn’t see a continence nurse because Onnee didn’t have special needs. The GP told me that if she could walk there wasn’t a physical explanation for the soiling, and that was the end of our conversation. I appeared to be hitting brick walls. I was distraught. I panicked because she was wasn’t making friends at school and felt her teachers were getting frustrated. Chronic impaction I eventually managed to see a doctor who I thought would be more pro-active at helping us. He explained that Onnee was chronically impacted and probably had been for some time. We talked through options for treating the constipation and decided to try treatment without a hospital referral because she’d been through so much already. We began a long term Movicol plan plus lots of emotional strategies to make going to the toilet more enjoyable and relaxed. Onnee was still having soiling accidents, so eventually we increased the Movicol significantly to flush her out, but the accidents continued. We struggled to understand why. Incontinence is exhausting Incontinence isn’t life threatening, nor does it sound particularly severe, but it is exhausting and it is daily. I began to dread collecting Onnee from school; how many sets of clothes would I be handed? Would I be asked to come in to change her? What were children saying to their parents? We didn’t let her go to parties without us or we refused invites to friends’ houses to play. How could I ask another parent to cope with that? One day a child called her ‘stinky’, Onnee was so upset it broke my heart. We planned days out around whether there would be toilet facilities. We didn’t leave the house until she’d had a bowel movement to reduce the risk of soiling. Whenever we went out we were constantly on edge about whether or not she would soil; there was no way of relaxing. The number of times we ended up stuck in a disabled toilet as I needed enough space to change my daughter whilst having a baby in a buggy and an older child. If someone was waiting outside a disabled toilet when I came out, I would avoid their gaze; I was used to frowns. It was a lonely world! Finding someone who understood About a year into our ‘journey’ I found ERIC and rang the helpline. I spoke to a wonderfully understanding lady called Natalie. I blurted out my daughter’s whole story and cried. I hadn’t realised how lonely and isolated I felt until I spoke to Natalie and felt utter relief wash over me! Not only are the helpline staff trained in understanding constipation treatment and continence problems, they understood all the emotions and situations I was describing as well. ERIC remains a source of strength for me. The staff are able to reassure me that we’re making progress and that what we’re experiencing isn’t unusual. I can hold my head high again I have a fantastic family and friends, and Onnee’s new teacher and school staff are amazing, but ERIC is different; there I can talk to someone who not only listens but listens with complete understanding. Onnee still struggles daily and ERIC gives me strength that I can pass on to her. She’s fabulous and has had a lot to cope with in her young life. I am so proud of how she copes. As her parents, we need to offer her emotional support, and for that we need to stay calm, sane and positive. ERIC has been a sanity lifeline. I hold my head high again knowing that this is not my daughter’s fault, it is a chronic condition. I will confront anybody that looks at me funny when I leave a disabled toilet. My advice to other families is to contact ERIC. Don’t wait! You don’t need to be embarrassed or ashamed and you are not alone. If I had contacted ERIC earlier, life would have been much easier for us. Bowel and bladder problems can be long term, don’t suffer alone. Read more parents' stories.