The Orange Carrier Bag of Shit

So I’ve started this blog as a way of dealing with my child’s medical issues. I thought it would help to write things down, and will also prevent people being subjected to me ranting on Facebook about it.

My son, Elliot (name changed to protect the innocent) has been suffering with faecal and urinary incontinence since we tried toilet training. He’s nine now and still wets himself at least once a day. His condition isn’t life threatening, and hopefully in the long term it will get better. But it is life changing. It’s not a ‘glamorous’ illness, it’s not something that’s easy to talk about and, as we’ve found over the last few years, its not something that’s easy to get treatment or support for.

It’s called enuresis (wetting yourself) and encopresis (extreme constipation resulting in a stretched and misshapen bowel, which poo leaks out of). It’s also known, in a way that doesn’t instill me with confidence, as dysfunctional elimination syndrome. That term just sounds a bit too vague to me. As though nobody really knows why it’s happening or what to do about it. Which is probably true.

Since we first saw our GP about it, we’ve seen several specialists, urology nurses, consultants and psychologists. Elliot has had x-rays, ultrasound scans, an MRI scan and a urodynamic assessment (the bladder artificiality filled and emptied while being viewed through an x-ray. He’s taken, and still is taking, various concoctions of laxatives and bladder medication.

We’re very slowly and gradually seeing some signs of improvement. But Elliot really struggles with it. The embarrassment, having to get changed at school, having to try to hide ‘accidents’ from his friends, dealing with comments from other children about him smelling. It’s heart breaking watching him go through it. The relentlessness of it all. And although I sound selfish for mentioning it, all the bloody washing. He wears pull ups at night (we’re not even going to attempt to tackle night time wetting yet) but they regularly leak. So, on an almost daily basis, we’re washing bedding, pants, trousers, socks and shoes (the wee often goes right down his legs into his shoes).

At school he has a special place where he can leave his dirty clothes so other children don’t see, and I collect them each day. They’re normally tied up in a Sainsbury’s plastic bag. So I’m often wandering about with an orange carrier bag of shit. Hence the title of this post.

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