Saturday, 10 May 2014

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


  1. That sounds so much like what my cousin suffered through. As she was alone and single and depressed she had the added difficulty of convincing doctors it was not @£@$@%@%@%@%@ all in her mind. She was only 4'8 anyway and never fat and after various operations had constant pain, poo and was so thin her arms were like fragile sticks. But this was in the 60s and 70s when even fewer doctors knew even less about Crohn's.

    I am so sorry she was not articulate enough to tell me how it was. I'm understanding better now because of you and wish I'd known. Only comfort is she did love visiting us and being with my kids. And I did love her and visit her too. Not often enough though.

    I hope what sound like small things to be able to do to make things better will work well and improve your life. xx

  2. va - my kids give me more joy than anything else in the world. I know for sure that the time your cousin spent with your kids was so special to her. We all think we didn't do enough, but sometimes we just don't know how much we actually did xx

  3. Hmm . . . You're right, he might well be unique.

    I was diagnosed with Addison's over a year ago while in hospital, close to death after months of starvation, vomiting and diarrhoea. A pity no-one told me!

    Finally figured it out back in March (exactly a year on from diagnosis), wrote a long letter to my GP asking him to confirm it (turned out he'd overlooked it in my discharge notes!).

    He wrote back confirming Addison's - I then had to fight him for the appropriate medication which took another month! - and he said that as I clearly knew more than he did about Addies, there was nothing he could really help me with.

    Truth to tell, I know more than he does about everything that's wrong with me - and that's a hell of a lot (11 separate conditions, about half of them fatal) - because I have more time for research than he does, but does he capitalise on that knowledge to our mutual benefit? No - he deeply resents it. So we both lose, especially me.

    OK - rant over :-)

  4. I know from personal experience, having had a 20 year journey to find such a person, that the feeling of equal joy and shock when a doctor 'gets' your condition is amazing and scary at the same time. When they're willing to talk to you as an adult, and don't insist you're imagining it all as with va's cousin, or don't let their nose get put out of joint when you try to explain the knowledge/insight you have of your own health, as ronsrants says, then, well, that's most definitely unique. I'm glad that you found such a rare species ... and I hope you're able to keep hold of him.

  5. This is the kind of doctor we need, but why are there apparently so few of them, I wonder. I avoid any doctor as much as possible (my chronic illness is under control) because they will not treat me as an equal. I've longed to have an intelligent discussion with a doctor but it seems impossible. So glad you've managed to have one!

  6. My GP (who is the best of my local bunch) copes with me being asertive and articulate by not talking to me.

  7. Great post Sue. So many people are just not articulate enough or empowered to do their own research or just plain assertive enough, when seeing any doctors, and then when you are one of those who can fight your own corner, often it's when you're so utterly down with your illness(es), it's really hard & exhausting to stand your ground. I'm reduced to tears too easily, get far too emotional very quickly with any medics. I am so pleased to hear you came into contact with Dr Unique - is it possible to have him as your consultant?? (Seem to remember you losing GP & consultant about the same time not too long ago..) xx

  8. The good old days of good surgeons i find are over' doctors much more so most often leaving me as the doctor

    personally i find them all a waste of time as their overall knowledge is so basic it's hard to even believe their even qualified in most cases
    talk about money for old rope

    the only thing in my 25 year relationship with my dr is he never asks any questions just what do you wont and that's about it

  9. You should consider this when you consider what to eat A great book for you to read would be Deep Nutrition by Catherine (Dr. Cate) Shanahan. If you're pooing out what you're putting in that suggests to me you should be eating less in terms of volume and more in terms of nutrition. You remember we were talking about electrolytes? People say coconut water's the thing and you can get it cheap usually on And I still don't have your email! xx

    1. Sorry Bill. It's Nutrition not the problem - 30 years has led me to read a thing or two myself ;) Short bowel syndrome the problem - oddly, I'm permanently dehydrated and need to LIMIT my fluids!! You can google it, it's fascinating and answered LOT of questions I've had for years.

  10. I went to my ESA appeal in front of a judge & a doctor.
    The doctor asked me a couple of totally relevant questions, looked at the judge, nodded and I was told I had won my appeal. This doctor knew exactly what she needed to clarify from me, & understood.
    I wish my own doctors understood me as well as she did - a few minutes, but knowing the subject makes all the difference!

  11. Sue I love you. Are we looking at these problems from the wrong direction. Instead of paying benefits why don't we give everyone a basic living income? It can be done, just needs to turn a few ideas on its head, and should be the major policy of at least one political party. We all have enough cash, we all spend that cash every month. What goes in comes around and goes out again - simple. There's lots of ways to explain this but this guy does a good job.

  12. Yeah, what Sue says! It shouldn't be, but is, more the exception than the rule that we get medics who treat us as having an equal stake in the conversation. My Pain Management people put every other doctor and all bar one physio I've dealt with in 25 years to shame for talking to me as an adult, and an expert patient - and they're far more effective because of it.

  13. Marianne Hepple15 May 2014 at 11:44

    Sue - you might be interested in this case in NZ - perhaps similar to yours. Sarah went public about her harrowing time dealing with Work & Income/Ministry for Social Development which pays benefits. In her latest piece she reveals why she is so sick