Monday 21st December 2015

8.10am – Enema of the State

Not the worst night’s sleep so far – think I only had to get up once or twice. However, bum is not in a good way today: quite painful when passing poo and still blood. Could all the enemas be making it worse? They certainly burn when I use them, and the glycerin is really hard to keep in. Just makes me want to poo, and what follows always hurts. Not looking forward to using all this crap at home.

1.45pm – an escalation

Saw the Scandi doctor at midday. He looked disappointed when I told him that I didn’t feel any better. In fact, he slapped his ID card onto his forehead when I told him I felt more ill for having been in hospital. I guess that’s not a glowing appraisal, but this has never really been about clinician skill; rather, it’s been a case of ‘suck it and see’ with all these various treatments.

Sounds like some sort of pesticide…

The long and the short of it is that I will be sampling the deliciously expensive Infliximab (Remicade). It sounds like a pesticide (some of the listed side-effects aren’t far off) and it works by inhibiting something called the Tumor Necrosis Factor (TNF) which is associated with inflammation in the body.

True to form, when we decided that this was to be the next step, it suddenly became a lot more long-winded than the doctor had made out to me last week. It has gone from being “on the shelf” and ready to go to needing high-level sign-off and dispensation. I pushed him to say when I would receive it and whether I could go home today, but he was quite slippery about it.

In the excitement (!) of seeing him this morning, I also totally forgot to ask him about what aspects of the other treatment I am expected to do when I am discharged. Still steroids + Asacol enema + Asacol oral + Movicol + glycerin enema + supplements? Plus Infliximab? Better renew that NHS prescription pre-payment card… should have put a one-year one on my Christmas wish list.

A family friend (who helped me get my first graduate job in 2011) got in touch the other day to share some advice about Inflammatory Bowel Disease (IBD). She has Crohn’s (I think she was diagnosed about ten years ago) so she has been through a similar experience. She urged me to get referred to a specialist hospital in London, which is a centre of excellence for IBD.

If the Infliximab doesn’t work then I think it will be more important than ever to be seen by the best people possible. Although that is an awkward conversation to have: “Hey, so I don’t think this hospital is going to do a good enough job so please refer me.”

There’s probably a better way of having this conversation… I’ll mull it over.

In the meantime, I am going to have a chat with the head nurse, M, about getting this show in the road (a.k.a. “What’s the delay?!”); getting the contact details of the IBD nurse; a referral (!) and whether he can give me any advice about work/fit notes. I only asked for five minutes but I have a feeling that this might have been a bit ambitious!

9pm – getting a dressing-down

So, it looks like I jinxed myself.

Having waited around for four or so hours after seeing the doctor (and a female doctor who still hasn’t introduced herself to me by name), I pottered to the nurses station to see what was happening.

There I found the somewhat-lacking-in-social-skills doctor writing in someone’s notes. I walked to the side of her and said “Hello”. No response. Perhaps she was deep in thought. Perhaps she wondered why a patient would be trying to talk to her outside of the designated ward round hours. After a couple more hellos, she raised her head to look at me.

I timidly enquired about the progress of the Infliximab acquisition, which she responded to very curtly. She told me that lots of things needed to happen before the pharmacy would dispense it because it’s expensive. When I enquired about the exact nature of the things that still had to happen so I could work out what the hold up was, she told me that she had 40 new patients admitted today, that she had only just started the ‘orders’ for them (I think this means the prescriptions) and that I was a low priority. Basically, reading between the lines, she hasn’t had time to do the extra paperwork she needs to do to get the hospital to release the drug.

Taking up a bed space because no-one has time to fill in a form

I also suspect that there is another person (perhaps administrative/management) who needs to approve it, which is just adding to another layer of bureaucracy (and therefore time) to the whole process.

It seems crazy that they would just waste money on keeping me in here simply because no-one has time to fill out a form, but that seems to be the case.

At the moment I dare to hope that I will be given the infusion by Christmas Eve so that I can go home and enjoy spending Christmas with my family. Dad thinks it’s an odds game (and he’s hopeful), but now things have rolled on this long, it wouldn’t surprise me if this whole thing bled into next week too.

Still, I have to think about all the things I am thankful for: my amazing family and fiancée, my (otherwise good) health and happiness, and my friends. I read a story in the newspaper this morning about a little boy who had never spent a Christmas at home. I suppose the reason that I’m worrying so much about missing Christmas is because at least I know what I’m missing out on. And anyway, I think if I was stuck here my family would throw a fake Christmas once I got out.

I wasn’t feeling this positive earlier. In fact, as soon as I had finished getting a dressing-down by the doctor, I ran back to my room and called my dad, sobbing. I felt so fed up, so frustrated. But it seems like this emotion is totally pointless; nothing will change the facts: this is a waiting game.

Nevertheless, he came up with a plan for tomorrow (he drove straight up here to cheer me up). I will:

  • Ask the head nurse to help me chase the paperwork up with the doctors;
  • Also ask him about day release so that I can keep my bed space but get out of here for a few hours;
  • Generally “buzz around being a pain” (dad’s words).

The final point might be fruitless, but the consensus between dad, T and myself is that the more I make a fuss, the more likely something (anything) is to happen.

The main issue is that my consultant isn’t due back until the end of the week, so it isn’t clear who is in control of getting things done. It is unlikely I will see a doctor with any authority tomorrow, so I will relay on the head nurse to get in touch with the right people for me.

But for now, I have to try and put these worries to the back of my head, especially if I am going to get a good night’s sleep.



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