Humiliating hospital horrors

Back to school after the Easter holidays and back into the routine of making sure Elliot has the correct changes of clothes in all the correct places – at school, after school clubs, sports clubs and friends houses. I feel as though I need some kind of spreadsheet to keep track of it all. In fact if anyone can invent an app that knows exactly where any item of clothing is at any given time and whether it is clean, dirty (or slightly stained but wearable), I would pay a lot of money for it. While you’re at it, if you could also create an add-on robot that does the laundry whilst running a nice warm bath and pouring a glass of red wine, that would be grand.

Although all the washing and organising is a pain in the arse, the reason I worry is that I’ll accidentally forget to replace the dirty clothes in the school locker with clean ones. When Elliot was younger he didn’t mind changing into whatever spare clothes school or nursery had to offer. But now he’s a bit older, although thankfully he hasn’t yet got into fashion and isn’t demanding to look like a Beckham, he doesn’t want to wear things from the school lost property box. He’d rather sit in wet pants and trousers than wear someone else’s clothes. He also doesn’t want to draw attention to himself by having to ask for spare clothes, so if I did forget to take spares, he would spend the day unhappy and distracted, sitting in urine soaked trousers and wanting the ground to swallow him up.

We have an assessment with a child psychologist at the hospital this week, which we’re hoping will help us and Elliot understand how we can work together to make things easier. At the moment he thinks he’ll never get better. And its very difficult for us not to think that as well, and although we try not to show him our frustration, he must pick up on it.

I feel as though I probably need my own personal parking space at the hospital the amount of times I seem to be there lately. I had an appointment for myself yesterday – I had a malignant melanoma removed last year and I have regular check ups now. It seems they’re now quite familiar with me as the first thing to consultant said when I arrived was ‘Oh I know you, take your clothes off and lie on your back’. Bit forward I thought. The experience descended further into Carry on Doctor territory when he was examining the lymph nodes in my groin (this was never going to be a non-humiliating experience) and the bed moved suddenly, almost resulting in him face first in my lap.

Luckily there was a nice chaperone with us who seemed to understand the awkwardness of the situation, and decided to distract me by showing me her moles (on her skin, not her collection of small rodents). So we spent quite a surreal five minutes comparing the various dot-to-dot patterns we are fortunate enough to be decorated with.

The whole experience was fairly embarrassing and uncomfortable, but as an adult I guess I just deal with it. But it does give me some understanding of what it must be like for Elliot who has been going through these types of experiences at the hospital for the past five or six years, with various doctors wanting to look at his private parts and ask him questions about the thing that he wants to talk about least in the whole world. I’m going to give him an extra big cuddle this evening. I might even buy him a little present on my way home.

And one for his little sister Rose otherwise she’ll kick off big time.

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.