To poo, or not to poo…
When toilet-training turns into serious toilet traumas, it is hard to know which way to turn. One reader shares her heart-wrenching story of her daughter’s medical misadventures into constipation, a distended bowel and a whole lot in between.
We all have to poo. And when you are not able to poo, the results are pretty uncomfortable on your overall wellbeing and energy levels. We all understand that. However, when my daughter began soiling and having serious constipation issues before she was two years old, the situation actually felt shameful. I recall having to hold my baby girl’s legs and push her knees into her tummy to assist her to pass a poo. The numerous visits to the doctor, the ridiculous amounts of lactulose my daughter was expected to ingest and the subtle, insulting questioning regarding the adequacy of her diet and water intake made me want to have a tantrum.
While my daughter was still in nappies we worked hard to convey the relaxed message that ‘pooing is a good thing’ and allowed her the time she needed, in the hope that things would resolve. Upon advice and following numerous visits to the doctor, we tried prune juice, Kiwi Crush, hospital strength powder sachets,, a gluten free diet; she had blood tests for celiac disease; we tried the cognitive behavioural ‘sneaky-poo programme’; there were endless suggestions from friends, and well-meaning loved ones proposing “tough-love”; reward charts, sugar-free sweets (too many make you poop, apparently) and psychotherapy on a weekly (costly) basis. We worked through this list of strategies over a period of years! We were constantly and condescendingly told that this is “very common” and that “most families” encounter this problem with their children. Who are they? I asked. Where are these families? I wanted to talk to someone who was going through what we were going through.
Our daughter got older and the issue remained. When she started school, I felt like such a failure as our daughter continued to soil and need changes of clothes during the day. I can still remember being called in to change her one day, as she had soiled and the school policy dictated they weren’t allowed to touch her. When I arrived, my 6-year-old daughter was standing in the bathroom with nothing on below her waist and watery poo seemingly everywhere. My heart broke for her. She continued to soil throughout the days and would complain of sore tummies and low energy. She had little appetite and a protruding stomach that simply looked wrong on a child.
Referrals by our GP to the paediatrics department at the hospital were all initially declined with our presentation not being “severe enough”. Finally, a chance email conversation led to us being given an appointment at the hospital. Once my daughter was seen, our case was validated and investigations began. A biopsy was negative for Hirschsprung’s disease. She spent six days in hospital, each day receiving a litre of Klean-Prep via a nasogastric tube into her stomach, to clear the faecal loading. She was discharged on Dulcolax Drops, which we had to source from Australia. The prescribed dosage was 20 drops, morning and night. We increased to 40 drops when they seemed to stop working and there hadn’t been a bowel motion for 14 days. Cramping pains were medicated for but my daughter wasn’t going to take any more medication. Poise incontinence pads (“poo pads” for adults), from the supermarket, came to our rescue. They were a little too big for her wee bottom but they saved my sanity and my daughter could change them herself at school. My husband and I were so conscious of her soiling and being smelt at school and being a target for bullying. We were doing everything possible to prevent this. Our very full, personal journey went from blaming and getting angry at our daughter to blaming and getting angry at ourselves, and then at the system, like a washing cycle on repeat! We fought tirelessly for a better solution and some answers for her, and us.
To the credit of the specialist who oversees my daughter’s care, he has now looked at all underlying causes. An MRI and ultrasound revealed no answers other than to show a distended bowel that doesn’t appear to work. In the hope of it ever functioning normally, we were told she would need an ACE procedure (‘antegrade continent enema’) – effectively a tube in her tummy and into her bowel connected to a bag of saline to flush out the bowel each night. It’s a last resort option in the hope that her bowel will start to work again and the procedure can be reversed when she is a teenager. It was a considerable wait, but hoping that we were making the right decision, her surgery and hospital stay went well.
So in recent weeks, at home each night we make up a saline solution that passes through the ACE and removes the contents of her bowel. She routinely spends up to 90 minutes on the toilet every night. It is still early days and my daughter protests at times and understandably questions “why me?”; however, this is now our new normal.
I wanted to share our story in the hope of normalising the issue and also raising awareness. There will be other parents and children facing similar issues. We will slowly battle the self-consciousness and the embarrassment and work to accept what is now our everyday evening routine. I wish to give a big shout out to another awesome 8-year-old girl and her family who have experienced a similar journey. Thank you for your support, advice and kindness. It has been such a rubbish time and I’m glad we connected. For others who would like support for something similar, please feel free to obtain my contact details from the Editor at Family Times.