Thursday, 9 February 2012

And On The Subject of Nurses

I feel bad. I talked about nurses last week; not in general, specifically the heroic stoma nurses.  And they are heroic.  I do feel my life would be poorer without access to them.  But I have done that terrible thing of overlooking another specialist nurse.  One who is also important, and offers a more longterm kind of support.  A nurse who’s been there for me since long before the bag, and who will doubtless still be there long after I’ve exhausted my need for the stoma nurse.  As long as Lansley’s NHS doesn’t cut her, that is.  I am talking about the IBD – that’s Inflammatory Bowel Disease - nurse.  The nurse who backs up both my gastroenterologist and my surgeon.  And not just mine.  She works alone – the days when the NHS could afford to pay for anyone to help her are long gone.  I expect there’s someone with no medical knowledge in charge of coffee procurement for some middle manager somewhere who has the money that could be better spent on an IBD nurse of a lower grade, but if I go into that too much I’ll explode, and it’s not exactly talking about the bag is it?  Though that has its own version of exploding, which I’ll go into another time if you’re not too squeamish.  So, my IBD nurse works alone, and she works with every doctor and every surgeon, at every level, remotely connected with the bowels.  She’s the only IBD nurse in the whole of this large London Teaching Hospital.  She has hundreds of patients who turn to her, and if she treats them all as well as she treats me – and I’ve no reason to suspect she doesn’t – she deserves at lot more than a salary and the odd thank you.  She deserves a medal, a full-time servant and a golden carriage. 

Doctors and surgeons aren’t easy to get hold of; when you need to ask them something, you feel like you shouldn’t somehow.  But I do have my IBD nurse’s bleep number and email address, so when I do need to ask something, like ‘can I see the consultant please, I really need him to look at my aching wound’, I just email her and she sets it up.  When I had to have a liver biopsy (more horrible than major surgery as it turns out – if you’re ever offered one, decline), and found myself on the ward where I had a bed, but no appointment for the liver biopsy, it was my IBD nurse who sorted it out and got me seen, biopsied and home within 24 hours.  When I decided to have the ileostomy it was my IBD nurse who liaised between my gastroenterologist and consultant; who talked to me about how it would feel, and if I was sure I wanted it; who arranged all the tests that were needed to find out why I was in the pain I was in and to see if the ileostomy would help.  In short, she’s invaluable.  But I do tend to forget about her until I need her.

Four weeks after my surgery, I was having terrible pain at the bottom of my scar.  This was the scar that I’ve mentioned before – the one that runs from just below my chest to my pubis; the one they go in to pull out the colon.  It had healed quickly and well, but for three or four days it had been getting hard and was burning hot and I had no idea what was going on.  It was hard to sleep, despite the pethidine I was taking; that’s how much it was hurting.  One night, I finally dropped off at about 3.30, only to wake at 5, feeling strange and bleary.  I was already fairly adept at the very early morning emptying of the bag and naturally assumed that was why I was awake.  I stumbled into the bathroom, went to sit on the loo and was alarmed to find blood dripping down my thighs.  A closer look revealed the source was much higher up, my knickers were also soaked, as were my pyjama bottoms.  It was the middle of the night/early in the morning, I wasn’t really awake and my first thought was that I was having some kind of bizarre period, and then I lifted my pyjama top.  That bit of my scar that had been hot and hard and hurting was now open.  Wide open.  Freakily open.  And as the blood ran out, it was followed by something gruesome and pus-like.  Pus.  I wasn’t really in pain any more though, so I was quite confused, despite having worked out what had happened.  I cleaned myself up, dressed the open bit of the wound – I still had lots of dressings left from the op – and went back to the bedroom to wake my husband.  No point being alone in this trauma.  If it hadn’t seemed really unfair I’d have woken the teen as well, but he doesn’t wake easily and he did have school in the morning.  So I sat with the husband, worrying and not sleeping, until 7am when I called the hospital and spoke to my IBD nurse.  Within an hour, she’d called me back, arranged for me to meet my surgeon in A&E and reassured me that nothing too terrible was going on; things like this happen, and it would all be sorted.

Years earlier, I’d had an open hole on the surface of my stomach – a fistula - for two and a half years.  I’d known it needed surgical intervention but for various reasons I’d been too scared to let them do it.  One day a piece of chicken fell out of it onto my dressing and I realised I had no choice, so I’d had it operated on and fixed.  I’d been young and carefree back then and had somehow muddled through my life despite it, but now, at fortysomething, I was petrified of having to deal with something like that again.  When the surgeon told me gently that this new hole was a fistula too, he saw the sheer panic on my face and instantly assured me that this fistula was nothing like that fistula.  He drew me diagrams to illustrate the difference and explained that this was a mucus fistula, which would eventually form a stoma of its own through which the mucus that my rectum wasn’t using would excrete.  I’d have a second bag to wear over that for as long as it lasted.  He was right, of course, and though this second stoma was a horrible, hateful, smelly thing that I hadn’t signed up for, that needed changing twice as often as my ileostomy bag, and that blighted my life for as long as it existed, I did at least feel supported while I had it.  And then, after about eight months, it spontaneously healed and I was overjoyed.  But how much more horrible it would have been had I not had my IBD nurse to contact every time something about it scared me, which for the first month or so happened a lot. 

This week’s blog has turned into a bit of a pro-NHS kind of a thing, and I make no apologies for that.  Our NHS is our most valuable asset; it’s something of which we should, as a nation, be proud, and something we must protect and cherish.  Right now, it’s in more danger than it’s ever been of becoming privatised and unrecognisable to those of us who have been lucky enough to have it for our entire lives.  There’s a petition you can sign to try to stop that happening here:
Nobody’s denying that the NHS needs reforms, but not the ones that are currently being proposed.  This bill needs to be dropped and a new one drafted that protects the true ethos of the NHS and, by extension, all of us.

And while we’re at it, we could take on a couple more IBD nurses here and there, because the one I rely on really deserves s a holiday.  


  1. Hi :) New reader here and really enjoying your blog. Fascanating stuff. Just wondered what was so horrid about your liover biopsy? I've had 2 and found them ok ...?

    Audrey x

  2. I feel the same about district nurses as you do about IBD nurses, I think.

    When I had my completion proctectomy last year, I was discharged with an infection (which the Doctor didn't pick up on as he was a registrar who didn't seem keen on removing dressings to take a look at a healing wound).

    From the district nurse who came that first time to take out some of the staples and redress my wound to the ones that came every day, to every other day to finally saying that I could pop in and see them instead I have a tremendous well of affection and gratitude for my district nurses.

    Nurses rock.