The NHS Code of Silence

As you all know by now, I find many things about UK healthcare perplexing. I didn't start this blog to be a welfare warrior - that just can't be left undone. I started it to muse on the bizarre and kafkaesque world of long term illness and the oh-so-unfathomable way we seem to approach it.

Regular readers might know that for the last couple of years, doctors have said "my bowel just doesn't work very well any more". That I've had so much surgery "things are very slow in there". My bowel is "flabby" apparently. Unable to put on weight and devoting most of my waking moments to maintaining the few kilos I do have has long been my primary obsession. It's a full time "job" in itself

Surgeons and medics have said that I "don't have much bowel left" (1.5 mtrs compared to the normal 4 or so) and that "less than a metre is not viable". For obvious reasons, I've resisted going too deeply into what "not viable" means.

And so, for two years, there's been a "no more we can do" elephant in the room becoming increasingly insistent that I give it my attention.

There have been mutters of "wait for a bowel transplant" or "fed through a tube for the rest of your days", but otherwise, I've had little choice but to man up and survive each day as it comes. Copious vomiting, impossibly endless diarrhea and fatigue so crushing I can never quite explain it with mere words appeared to be the best I could hope for.

I always wondered though, how, if you need 4 mtrs of bowel to "be viable" and I only have 1.5 mtrs left, it could be possible to go from hunky-dory to "not viable" in the space of a centimeter. If 1 mt is "not viable" and 4 mtrs is average, how can there be no ill effects at all from very-nearly-only-a-metre?

Perhaps cells have a union and simply down enzymes and refuse to work at this magic metre mark until agreements have been reached? Maybe there is a little switch somewhere that just somehow knows to activate as the magic threshold is breached?

Anyway, understandably "just soldiering on" has been something like a little corner of hell, right here in Sussex. In particular, the last month or so has been close to intolerable. The pain fogs my mind, the nausea and constant diarrhea leave me ever weaker.

And so, as all good spoonies know, there comes a point where you can't avoid a medic any longer. You might have ranted or railed, naively pledged never to set foot in a hospital again, never to be defeated by a few mutant atoms, but in the end, the horror of reality just can't be kept in that box anymore. It's full to overflowing and something has to give.

Last week, frustrated by GPs and utterly symptom-miserabe, I phoned my hospital for advice.

A very nice voice called *Dr Unique came on the line and I tried as hard as I could - as I have so, so many times - to explain what was wrong with me. I've always assumed there must be some unwritten rule that says you only have about a 30 second window in which to convince Drs that, yes, you really are ill, you really aren't a delusional drama-queen, and yes, you can understand words with more than one syllable.

But what is this?? Dr Unique has time for me? He actually seems to have an idea of how he might be able to help me and - to be honest this is still freaking me out today, 4 days on - he seems to very much indeed know what he s talking about. Even more miraculous, he seems content to share it with me as one adult to another. I am so surprised by this that I spend the first 5 minutes or so of our chat missing what he was telling me, trying to process the change.

I've always wailed miserably "How can one body produce so much poo? I am a poo tardis. If you cut me in half, the word "poo" runs right through me like  stick of Brighton rock. How can this be? How can I need to poo 15 or 20 times a day when once will suffice for most? Where does it all come from? How is it, that despite constant grazing, cow-like on high calorie snackage, stuffing myself against my will like a little foie gras duck, I can never put on weight? In fact it's all I can do to maintain it?

Well, Dr Unique knows these things. Frankly, I'm always a tiny bit relieved when a medic I don't know even knows what crohn's is, let alone anything of the smorgasbord of details that might complicate it. But Dr Unique appears to be very good at his job.

Firstly, he explained I had something called "short bowel syndrome". Because of the many, many operations I've had, I've lost more and more bowel and so, more and more of the ability to get any goodness from my food. It turns out there IS a middle ground between "healthy" and "not viable" after all.

The pain could be due to "bile salt overflow" which Dr Unique uniquely appeared to know would almost certainly be causing pain as I don't have the bit of bowel left to avoid it!! How could that have been hard for others to know?

I have "bacterial overgrowth" and that can be treated too.

So, whilst Dr unique couldn't quite assure me my bowel will grow back, he had a whole host of weapons in has armoury to at least hopefully make me a bit more comfortable.

But, here's the point. None of these things were new to me, doctors had muttered about them before. But no-one would explain them and why they might work, using big grown up words and everything.

We discussed "anastomatic strictures" (the real term for the pathetically wooly "flabby bowel" I'd been fobbed off with". We talked at length about electrolyte imbalance and how there were simple drinks I could make to help me absorb more nutrients.

In short, I can avoid the above 800 or so words by summarising : He treated me like an equal. Like a grown up with my own brain and everything.

Why why why why why why why why why is that so hard?







*Names have been changed to protect the innocent