Monday, 5 November 2012

Surviving Crohn's Disease in Japan: An Awfully Big Adventure

In July 2006 I almost died.

I woke up in my hotel room in Tokyo with severe abdominal pain that intensified as the day wore on. My initial reaction was to dismiss it as one of my 'episodes' - a small blockage probably caused by something I had eaten the night before. After all, I had neatly tucked away a feast of the most wonderful, the freshest Japanese food, much of it raw and from the sea, all washed down with Asahi beer and warm sake. Was I now paying the price for my indulgence?

I was used to having episodes: they were debilitating, annoying even, but I always got over them in a day or two. I knew what to expect, but this was unlike anything I had experienced before. It seemed there was nothing I could do to relieve the pain and the overwhelming nausea.

Nevertheless, I was determined to enjoy my last day in Japan. This was the first day Ming-Yeh and I were alone and had planned to see the sites before we flew home to China the next day. I had to be ok. Moving around only made it worse, and the nausea and a desire to vomit were paralysing. Having almost collapsed in the street, we decided to head back to the hotel.

Normally, sleeping helps. Sleep as much as I can and then I will awake pain free. Not this time. No matter how I lay in my bed I could not get comfortable and relax. I closed my eyes but could not drift off.

Rolling around in the bed, clutching my stomach, I somehow sensed the end was near. I vividly recall thinking, ‘If this is my time to go, so be it. I just want the pain to stop.' And then perversely: 'What a wonderful way to go - in a hotel in Tokyo. How very Hemingway.’

At midnight, we decided we could take no more, and Ming-Yeh asked the hotel to call an ambulance. Neither of us can speak Japanese, but we were comforted by the fact that the ambulance driver knew about Crohn’s (I always had to provide lengthy explanations in China which I am sure were garbled in translation). After struggling to find a nearby hospital that could cope with the 'English patient,' at 1am the ambulance whizzed me through the surprisingly crowded streets of Tokyo with sirens wailing and the driver politely requesting other road users to 'please move to one side'.

At the hospital, a series of scans and X-rays revealed I had a twisted and perforated bowel, a fatal condition without immediate attention. My trip 'home' to China the next morning would not be happening; instead I would be having emergency surgery. I was given pain killers and sleeping tablets and was finally able to drift off. What I dreamt about I cannot recall, but I do remember it was a pain free and very deep, comfortable sleep. I learned later that Ming-Yeh had spent the night on a couch in the waiting room.

The surgery was a success, and the doctors showed me the photos to prove it. A huge segment of bowel was removed, and we got to see that too, in a small bottle that the doctors exhibited the day after my operation. With a mask on my face to help me breathe, two tubes draining the wound at my side, and the anaesthesia making me semi-conscious, I feigned interest in seeing part of my anatomy before my cloudy eyes.

The skills of the doctors and the tenderness of some of the most beautiful nurses I have ever seen helped me to a swift recovery without any major incident occurring. During morning rounds the doctors discovered fluid in my stomach and decided it had to be released. ‘Oh no,’ I thought, ‘back to the operating theatre’. But I was wrong: the surgeon decided to release it there and then at the bedside. As one reached for a scalpel and started to cut, another doctor expressed amusement that I had started to sweat.

Being in hospital for ten days gave me the opportunity to learn a little Japanese. I also tried a new Japanese diet: Miso soup for breakfast, lunch and dinner, and a plate of green mush that even the doctors could not identify and refused to eat. I also had time – a lot of it: time to read, rest and above all think. It was strangely calming being in hospital in a foreign country; I could converse with neither the other patients nor the staff; there was no television, radio or internet; no English-language newspapers easily available; no mobile phone. I felt thoroughly cut-off and isolated ... and it was wonderful. All I had to do was catch-up on my reading, gaze on the orange tree outside my window, and meditate. I cried a lot; I cried when I realised how lucky I was, when I remembered how much I love Ming-Yeh and thought about what she had been through, and when I thought about the possibility of having to do it all again some day, because Crohn's is a bugger - it sneaks up on you when you least expect it and hits you between the eyes. This means I have to enjoy and be thankful for every day I am not in pain or discomfort, and remember that having to rush to the toilet a few times a day is a minor inconvenience compared to almost dying in Japan.

To survive life in China I always told myself that the little challenges, the annoyances and the frustrations were all part of the adventure. My trip to Japan had certainly been an adventure, never to be forgotten, but certainly not one I would like to repeat.

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