Why hospitals make you sick
He went in for a simple operation, but drug reactions and MRSA left him barely clinging on to life. So is treatment always worth the risk? Colin Ludlow is not so sure
Monday 28 January 2008
There is a scene in one of Ken Russell's musical biographies where the consumptive Chopin coughs up blood over his piano. Messy though this is, his effusion is tiny compared with the flood of dark-red liquid that I managed to bring up over the floor as I lay on my hospital bed. I was suffering a massive haemorrhage, caused not by the fairly simple operation that had brought me to hospital in the first place, but by a drug I had been given for the side effects. I think it was then that I realised my treatment was all going horribly wrong.
My dark night of the soul actually began two years earlier, when my wife, Anna, was diagnosed with bowel cancer. We endured months of fear and anxiety as she underwent surgery to remove the tumour, then dragged herself through 24 gruelling sessions of chemotherapy.
Gradually, though, the gloom began to lift. There were no signs of the cancer recurring, and the surgeon felt it was safe to undertake a second operation to reverse the ileostomy that had been created while her re-sectioned bowel was healing itself. Anna's body – and with it, we hoped, our life – was returning to "normal".
The day after this operation, however, I went from visiting Anna on the ninth floor of the hospital to an appointment of my own with her surgeon on the first. He was slightly bewildered when he saw me, thinking perhaps that I had come to discuss her case. Ten minutes later, after examining me, he seemed stunned: "You have a polyp in your bowel."
Lightning may not strike twice in the same place, but bowel cancer, it appeared, was a different matter. The odds on both Anna and myself contracting it within the space of two years were about as likely as winning the lottery. The fear came flooding back, but at least we knew the form – or thought we did. I now faced an identical operation to Anna's, although my own cancer was significantly less advanced – indeed, the initial biopsy did not even confirm that the tumour was malignant. Anna had spent 10 days in hospital following her surgery and I expected to be home in much the same time.
In the event, I stayed for five months, nearly died on several occasions, contracted MRSA, and, more than three years later, am still recovering.
Before I was admitted to hospital, I was in ostensibly good health. I had not seen a doctor for several years, was reasonably fit, and the only symptom of my nascent cancer was a tiny trace of rectal bleeding, which my GP thought was caused by piles. So it was a surprise to everyone when, in the days following my operation, my ileostomy stopped working and my temperature started to soar. I was prescribed ibuprofen to bring it down, but this led to internal bleeding. That took the form not of some invisible leakage, but of the spectacular vomiting described above. While the nurses mopped my blood off the floor, I was rushed away for an endoscopy, which revealed massive haemorrhaging.
Suddenly, my condition was in crisis. The bewildered doctors in intensive care struggled for days to staunch the bleeding, but their efforts were in vain. Over one weekend, I was given 45 units of blood in transfusions. Finally, they decided to try an expensive clotting agent called Factor VII, and Anna was told that if this failed to work by the second dose, there was no more hope for me. My two young children responded to the news of my imminent death with storm-battered calm.
Fortunately, the treatment was successful. But my ordeal was far from over. In the meantime, or possibly beforehand – I was unconscious on a ventilator for much of this time – I was taken back to the operating theatre for the removal of another section of suspect tissue from my bowel, and I caught MRSA. In the context, this was the least of my problems – the dangers of this "superbug", it has to be said, are often greatly exaggerated, despite dramatic cases such as that of Leslie Ash, who last month won a record £5m payout after nearly dying of the superbug. But, as a consequence of contracting the infection, I developed pneumonia, which placed my life in danger once again. There was no strength left in my battered body to deal with this new challenge, and I submitted, with feelings of unutterable exhaustion, to having a hole drilled in my side and suction tubes thrust down my throat to drain the infected lung. I simply wanted to be left alone.
After six weeks in intensive care, my condition finally stabilised and I was able to return to a general ward. But I had lost four stones, and found I was so weak when I got out of bed that I could only walk with the aid of a Zimmer frame. I also discovered that a fistula had developed from my small bowel, at the site of my abdominal wound. This meant that excrement was now oozing out of my stomach wall. Following accepted practice in an attempt to heal this, I was drip-fed for a further six weeks. When the doctors eventually allowed me to start eating again, my stomach was so damaged that every meal caused indigestion and acute nausea. Drugs were prescribed to assist with this, but brought little relief.
On the day when I was due to go home for a few hours, in an attempt to prepare for my eventual discharge, I awoke with an excruciating pain below my right-hand ribs. An ultrasound examination revealed an inflammation of the gall bladder – a common side effect of prolonged TPN (drip) feeding. This further setback devastated me, but I was given antibiotics, which in turn added to my feelings of nausea, as antibiotics tend to do.
I began to feel like I was playing some infernal game of medical pinball – in which I was the ball. As I drifted towards oblivion, a timely flick on the flippers by the doctors would send me racing upwards again, only for me to crash into a cunningly concealed barrier from which I bounced off in a different direction – slap bang into another wall, which catapulted me downhill once more. I longed for the endless, head-spinning sequence of treatments to cease, but every time my condition seemed to improve a little, a further investigation or change of drugs would send me cascading backwards again. My testicles swelled to the size of a grapefruit, but I have no idea what caused that. I only remember that it took more antibiotics and concomitant nausea to return them to normal.
Eventually, I was judged fit enough to leave hospital. But even after I was discharged, the chain reaction that my operation had sparked continued its inexorable logic. I began to have difficulties swallowing, which were ascribed to a stricture in my throat. This, it is thought, was the result of tissue damage caused by excessive acidity, caused by stomach damage, caused by treating the fever, caused by complications, caused by the operation to cure my cancer. The stricture is now treated by regular throat dilatations that require not eating for 24 hours, which invariably upsets the fragile balance my stomach has attained, and results in a few days of renewed nausea and discomfort.
It is relatively small beer, but it is a constant reminder of three things that I have learnt, or been left with, as a result of my experiences. The first is that the body functions as a totality, or not at all. You cannot view organs in isolation, as damaged parts, which may simply be repaired or renewed. Treat a disease in one place and you inevitably affect the whole – the intervention has implications for the entire body. A mechanistic, compartmentalised approach to medicine, still so common in Western practice, is fundamentally flawed.
The second thing I have developed is an intense yearning to be free of hospitals and to take as few drugs as possible. Every intervention or course of pills carries its own set of consequences. The waters become muddied, and you are left fumbling, ever more helplessly, to identify your baseline symptoms and understand the true cause of your problems. Only by escaping hospital procedures for significant periods and resisting the temptation of increasing chemical reliance does it seem possible to break the relentless cycle of side effects and complications that prevents any sustained progress or feeling of improvement.
Finally, I have come to realise the risk or danger involved in any medical treatment. Because the body works as a whole, you interfere with its fantastically subtle, self-regulating balance at your peril. Even something as routine as a CT scan has consequences that the body can take several days to "correct".
This is not an argument for avoiding treatment, but is one for agreeing to nothing lightly. I have always found plastic surgery hard to understand, but I now find it simply incomprehensible. Any non-essential operation involves risks that do not seem worth taking. Doctors who are administering treatments and prescribing drugs every day can easily become blasé about the cost to the patient that accompanies them. They also tend not to tell the full story about the risks involved, because they do not wish to cause alarm and prompt the patient to refuse the intervention.
When Anna was prescribed chemotherapy, a doctor friend lent me a medical journal that contained some recent research into alternative forms of adjuvant therapy. Regrettably, the most successful of these was still only at trial stage, but what struck me was the sobering statistics on survival rates for people with bowel cancer.
For patients with Anna's particular form of the disease, a paltry 43 per cent could expect to live for five years or more after surgery. With "preventative" chemotherapy, this figure rose to 57 per cent. For every five people with the disease, at least two were going to die anyway, and a third would follow suit if chemotherapy were not prescribed and accepted, so there was no way that it made sense to refuse the treatment. Having said that, I do not think that my grandfather's lifelong determination to avoid going anywhere near a hospital after he served as a medical orderly in the First World War was without its own, painfully learnt, wisdom.
This is an edited extract from 'Shadows in Wonderland: a hospital odyssey', by Colin Ludlow, published by Hammersmith Press on 7 February in paperback, (£9.99)To order a copy, with free P&P, call Independent Books Direct on 08700 798897
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