health

'For years, we've watched our daughter suffer from an undiagnosed and humiliating bowel problem.'

Calling it a “crap situation” would be an understatement.

Seriously, all the puns and metaphors have been used as a way of coping with the infuriating human issue of pooing – or not pooing in our case. If you didn’t know before now, all living things have to poo. And when you are not able to poo, the results are pretty uncomfortable and impact your overall wellbeing and energy levels.

We can all understand that. But when my daughter began soiling and having serious constipation issues from before the age of two, the situation actually felt shameful. I recall having to hold the legs of my little girl as a baby and push her knees into her tummy to assist her to pass a poo – something we mostly take for granted.

The numerous doctor’s visits, the ridiculous amounts of lactulose expected to get my daughter to happily ingest and the subtle, insulting questioning regarding the adequacy of her diet and water intake made me want to have a tantrum.

Watch the trailer for our two podcasts, This Glorious Mess Big Kids and Little Kids, for humans that have babies and have questions. Post continues below.

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While my daughter was in nappies, we worked hard to allow her the time and the relaxed message of ‘pooing is a good thing’, in the hope that it would resolve. She broke her leg at two, which didn’t help toilet training, but it didn’t cause the constipation either.

On advice and numerous doctor’s visits, we tried the prune juice, the kiwi-crush (turns out she is allergic to kiwifruit), the unrealistic quantities of powder sachets that were “hospital strength” for bowel prep surgery, the gluten-free diet, the blood tests for celiac disease, the cognitive behavioural ‘sneaky-poo programme’, endless suggestions from friends, “tough-love” suggestions from well-meaning loved ones, reward charts, watching a tablet and playing games on the toilet, sugar-free sweets (too many make you poop apparently) and psychotherapy on a weekly (costly) basis.

This tireless list of strategies to trial occurred over a period of years, We were constantly, 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 that was going through what we were going through.

As our daughter got older and her issues remained, I was told that the rejected referral letter to the hospital had recommended I attend a ‘parenting course’ – to help with my daughter’s “problem behaviour”. It was so dismissive and so disdainful I thought I was going to implode. I felt so angry!

Starting 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 to come into the school to change her one day as she had soiled and the school policy was that they weren’t allowed to touch her.

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When I arrived, my six-year-old daughter was standing in the cold bathroom with nothing on below her waist and watery poo seemingly everywhere. My heart broke for her. How shaming for her! She continued to soil throughout the day and would complain of sore tummies, have very little energy, no appetite and a protruding stomach that simply looked wrong on a child.

Referrals by our G.P to the Paediatrics department at the hospital were all initially declined with our presentation not being “severe enough”. I finally got seen by the hospital by a chance email conversation.

My daughter got seen, our case validated and investigations began.

daughter-bowel-condition
Wonita's daughter with their dog. Image: Supplied.

A biopsy was negative for Hirschsprungs Disease although X-rays revealed significant faecal loading. She spent six days in the hospital, each day receiving a litre of Kleen-prep fed through a nasal gastric tube, down into her stomach, in order to clear the faecal loading.

That didn’t work “as well as could have been expected,” I was told.

We were discharged on Dulcolax drops that we had to source from Australia at the time, initially taking 20 drops of this medication, morning and night. We increased to 40 drops when they seemed to just 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.

I was frequently throwing out her soiled underwear until I brought her some “poo pads” – Poise incontinence pads for adults from the supermarket. A little too big for her wee bottom but they saved my sanity and my daughter could change them herself at school when needing to.

My husband and I were so conscious of her soiling and being smelt at school, and becoming a target for bullying. We were doing everything possible for this to not happen. Our 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 tirelessly fought for a better solution and some answers for her and us.

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To the credit of the specialist who oversees my daughter’s care, he has now thoroughly 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 for her, we were told she would need an ACE procedure.

An ACE is an ‘Antegrade Continent Enema’ by means of an appendicectomy tube – effectively a tube in her tummy and into her bowel that will be connected to a bag of saline each night to irrigate or flush out the bowel. 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 and a few more tears and tantrums (from me) before she reached the top of the surgical waitlist. Hoping like anything that we were making the ‘right decision’, her surgery and hospital stay went well.

So as of recent weeks, at home each night we make up a 500ml saline solution that passes through the ACE and removes the contents of her bowel. She spends up to 90 mins on the loo routinely every night, with the hope of it not taking as long eventually. It is still early days and my daughter protests at times and understandably questions, “Why me?”, but this is now our new normal.

She still needs her wound dressed and a tube hangs out that will eventually become a ‘plug’ type attachment that won’t be as obvious. For now, she is all set up with a table in the bathroom, a cushion for her back, activities to do, tablet to watch and she even has her tea in there!

With it being our only toilet in the house, it’s not without its impact on the rest of us – albeit that's a first world worry!

I wanted to tell her story in the hope of normalising the issue of a body function known to all of us and how significant it becomes for parents with similar issues in their children. We will slowly battle the self-consciousness, the embarrassment and acceptance of what simply is now our everyday routine.

Been listening to our new co-listening podcast for parents and kids, That’s Incredible? Tell us what you think.

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