Computer says no

Just getting Elliot’s medicines ready for breakfast and realised we’re nearly out of Movicol. Which means we have to begin the whole trying to get a repeat prescription rigmarole.

He’s on laxatives indefinitely and we have them all on repeat prescription, which Boots collects from the surgery and prepares for us. So in theory we simply pop into Boots and pick up his medication once a month.

In practice this turns into a twelve step process:

  1. Pop into Boots to pick up medicine.
  2. Boots say they haven’t received the prescription from the surgery.
  3. I phone the surgery to ask if they could get prescription ready as medicine has almost run out.
  4. Receptionist says she’ll ask doctor to do it.
  5. The next day I phone Boots to see if the prescription has been faxed over. It hasn’t.
  6. I phone the surgery again to say it’s getting quite urgent now.
  7. Surgery say they hadn’t been able to fax it because fax machine has broken (but they didn’t think it was worth letting me know of this).
  8. I offer to pop in and collect the prescription.
  9. I arrive at surgery to find prescription hasn’t been written yet.
  10. Wait for prescription while practising death stare on receptionist.
  11. Take prescription to Boots and pick up medicine.
  12. Go home and submerge head in a bucket of wine.

I’m a huge fan of the NHS and they do an incredible job, so I do feel bad for complaining. I know it’s the system that’s the problem and it’s not normally the fault of individual staff who are just doing their best with unrealistically few resources. But as we’ve been dealing with Elliot’s issues for so long, and seen the emotion and psychological impact it has on him, it’s really hard not to get frustrated. We often feel the need to have someone to ‘blame’ even though it’s not their fault. Although, in the case of one particular doctor, it might be:

Me (on phone to doctor): Hi there, would it be ok for you to please send Elliot’s repeat prescription to Boots electronically – he needs it today and they haven’t received it.

Doctor: Can you remind me what medication he’s on.

Me: (under breath) Surely you should know that. (Out loud) Yes it’s Optifibre.

Doctor: I can’t find that on our system, can you bring the box into the surgery so I can look at it.

Me: He’s been taking it for a while so it should be on the system. I’m at work so I can’t bring the box in, shall I email you a photo of it?

Doctor: Ooh we don’t do email!

Me: Ok, if you Google it you can see a photo and description of it.

Doctor: I can’t see it on my Google.

Me: (explains how to use Google)

Doctor: Ok I’ve found it now, I’ll send it to Boots.

Me: Thanks, you’re sending it electronically aren’t you? He needs it today.

Doctor: No I’ve printed it to put in the post.

Me: No he needs it today, can you send it electronically like you did last time.

Doctor: But I’ve printed it now so I can’t. I’ll fax it, whats the fax number?

Me: I’m afraid I don’t know the fax number (as I no longer live in the bloody 1990s).

Doctor: Can you phone Boots and ask them for their fax number?

FFS!! Wine bucket time again.

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If you were a particularly cunning poo where would you hide?

Or, places I’ve found pieces of shit.

When Elliot was younger and before we really knew what the problem was with him soiling and wetting, he’d do apparently ‘normal’ poos in the toilet but then also do random rabbit droppings in his pants. We know now that it was because his bowel was so full of compacted faeces, it was stretched and the muscles weren’t working properly, so little pieces of poo would make their way past the big solid bit and pop out of his bottom with him being completely unaware.

At the time we couldn’t get our heads around how he couldn’t feel them coming out. And also how he was too embarrassed to tell us if he did then feel them in his pants. So the poo would often make its way out of his pants and down his trouser leg resulting in poo balls sometimes appearing in the house.

I’ve on several occasions picked up a raisin that someone must have dropped. No it was a piece of poo.

Only yesterday I saw a flattened cornflake on the hall floor, went to pick it up. Yep, it was flattened poo.

We once spent several days slowly sending ourselves insane trying to work out where the poo smell was coming from. If you were a particularly cunning poo where would you hide? It turns out inside a cushion cover. We still don’t know to this day whether Elliot was worried about pooing himself so hid it in the cushion, or whether his poos are just extremely conniving little bastards who have bets with each other to see who can be the most stealthy.

“I’m crazy I am”

Had a call this morning from a colorectal nurse about the results of Elliot’s latest x-ray. He’s still very constipated, despite being on three different laxatives at the minute, so we need to go in and have a chat about possibly adjusting his medication again.

We’ve not seen this nurse before, we normally see a urology nurse and a urology specialist. We’ve never been quite sure why we only see ‘wee based’ professionals when the problem is wee and poo (and we’re regularly told that once the poo is sorted the wee will follow). So it’s somewhat promising that we’ll see a ‘poo based’ nurse.

The poo man seemed very jolly on the phone. Worrying so. I think he may be the children’s outpatient equivalent of The Office Joker. I think he did actually say ‘I’m crazy I am’. He definitely did say ‘you’ll enjoy seeing me’ in the manner of someone who wears comedy socks and superglues pound coins to the floor.

Although I jest, he did actually sound like someone who would be good with children, and that, from our experience so far, is a rare and special thing. Too many consultants have talked to us over Elliot’s head, about all the things he finds the most upsetting and humiliating in the world, and then seemed surprised when he refused to answer their questions.

So we’ll how it goes with colorectal man. I guess working with colons and rectums all day you need a sense of humour. Though I’ll not be best pleased if he brings out a comedy plastic dog turd.

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.