This incremental novel opened with my diagnosis of Coeliac Disease. However, I am forced now to confess that the account was misleading, because the condition was only partially detected. While the initial results received strongly indicated the presence of Coeliac, a full diagnosis required an endoscopic examination. At the time of my appointment with the GP, a referral had already been made to a gastroenterologist, but there had been some miscommunication about just how soon I was emigrating. As it was not possible to undergo the procedure before my departure, I chose to take the diagnosis as confirmed, and hope that eliminating gluten from my diet would soon solve all woes.
I was gluten free for roughly a week in the UK, in which time I noticed a change in my symptoms, but no demonstrable improvement. In Japan, alternative diets, even vegetarianism, are sadly not widely recognised, and in many circumstances the menu options consist of take it or leave it. Moreover, there is a lack of standardisation in food labelling, and the highlighting of allergens on packaging is extremely inconsistent. As a result, my week with Rose and Henry in which I attempted to be both vegetarian and gluten free was difficult and exhausting.
Communicat had informed each of my schools that I had an allergy (I considered the nuisances of autoimmune disease not to be worth the bother of explanation), so while all students and teachers ate the pre-ordered school lunches, I needed to prepare and bring food every day. It was troublesome, and my meals were frequently repetitive. This went on for about a month, in which I would wake each morning expecting the symptoms to cease and my life to be enriched. Not only did my condition fail to improve, it seemed to be worsening. Every day the disappointment and confusion mounted, until eventually the frustration grew too great, and I sought medical advice. I found and contacted an English interpreter based in a hospital in Aizu Wakamatsu, a large city about forty minutes’ drive from Kitakata.
The interpreter’s name was Miyoko, and I met her on 1st August at Yamada clinic. Finding the place proved harder than anticipated, as it is located in some sort of medical district, in which every building is a pharmacy or hospital or clinic or dispensary. Miyoko is a kind and friendly young woman, who dealt with all the necessary bureaucracy and waited with me for what felt like forever to see a doctor. As we talked together in the waiting room filled with people under its low ceiling, a splodge of light appeared in the corner of my vision which continued to expand and dissipate until it had obscured the periphery of my left eye. This was distracting and unnerving, as I could only assume a terrible headache was imminent. At long last I saw the doctor and in a very brief consultation I was immediately referred to a specialist at the hospital five minutes’ walk down the main road. The lights in my vision had gone by the time of the meeting, and nothing else had yet set in.
Miyoko walked me over to the hospital in the sweltering summer sun, as I attempted to avoid the ceaseless waves of heat seeming to radiate drunkenly from every innumerable concrete surface. It was going to be an even longer wait in the gastronomy department, so Miyoko left me, to return when I was ready to be seen. While in the wide, bright waiting area my condition rapidly deteriorated. For a long time the problem did not manifest as a headache, rather my brain felt heavy and incapable. I had brought my e-book, but reading was unbearable. At length the inevitable nausea began and swiftly worsened. I drank copious amounts of water from a fortuitous fountain, and at midday I attempted to eat something in the slightly desperate hope that it would prove curative. Despite my efforts to consume the cereal bar I had with me, I could only manage to cheerlessly nibble a corner before pushing it back into the wrapper and returning to the free water. I suffered on for a few more hours, and finally began to feel like I might actually vomit. Entering the hospital toilets, I caught sight of myself in the sink mirrors, and stared for a moment at my moribund face in stunned repugnance. I went into a cubicle, with no need of its designed ergonomics, and sat on the floor, resting my head against the door. I finally felt something resembling comfort and closed my eyes, as my mind drifted toward the illogical and fantastical and, finally, sleep. I was woken not long after by a call from Miyoko querying my location. I leapt up and rushed back to the waiting area.
At last we met with the specialist, a nice middle-aged man with thick lips, long legs and balding head. Having read discouraging online anecdotes by Coeliacs in Japan, I had previously entertained fears that my problems would be met with apathy by the Japanese medical profession, but this doctor was genuinely concerned about my wellbeing and gave me the best care he could. It would seem that Japanese people do not suffer from Coeliac (which makes some sense as the disease is genetic) and the doctor, having never treated it before, had in fact familiarised himself with the condition just prior to our meeting. After the consultation, in which it was decided I should undergo an endoscopy, Miyoko took me to give a blood sample on a different floor of the building. The lady who extracted my blood was friendly, and enthusiastic to trial some of her English on me, pulling out a notebook of hand-written phrases. She also didn’t leave a bruise from the needle, which I was most impressed with.
My undignified toilet nap had left me feeling better, but I was still pretty ill. I felt terribly guilty that despite Miyoko’s valiant efforts at small talk, I couldn’t find the energy to initiate or maintain conversation. Although feeling awful, I forced myself to get some chores done on the way home. Once finally back, I had a shower and moped self-indulgently on the floor, eating salty rice and drinking yet more water. At seven o’clock I went to bed, exhausted and with mysteriously sore hips.
I had thought that my appointment at eleven o’clock on 6th August was the fated endoscopy, but it was in fact another consultation and the results of my blood test. A number of food allergies had been tested for, most of which I had personally selected from an extensive list in the first consultation. No food allergies had been found. The doctor expressed uncertainty about the presence of Coeliac, which distressed me because my symptoms could then be indicative of something worse, or even undiagnosable. I was booked in for an endoscopy the following week, with the possibility of also undergoing a colonoscopy. Once this was agreed, I was sent to speak to a dietitian, who handed me many pages of information about websites from which I could potentially order gluten free food (pictured).
In the end, this information went unused. The curious thing about Coeliac is that, once effectively treated, it is undetectable. With no gluten for the villi to react to, the digestive wall will appear normal. I managed to remember this prior to any testing, and began intentionally eating gluten to trigger the symptoms and, hopefully, receive an accurate result. I would discover sometime later, though, that I may not have been consuming as much for as long as recommended.
Endoscopy Day started bright and early at half past nine on 11th August. I had not been permitted to eat past eight o’clock the previous evening, and so was fairly hungry and tired. Miyoko commented that I must be nervous, but actually I was not at all apprehensive, until she talked me through the procedure. First I had to drink some medicine that would do something to my stomach, then I had to hold anaesthetic in my mouth for three minutes while my tongue and cheeks numbed. I then had to receive a painful injection to slow my digestion. Once all that was endured, we had to wait for a long time to have the actual examination. We waited so long, the anaesthetic began to wear off, and a nurse topped it off by spraying more into my mouth, which was unpleasant. At long last I was shown into the operation room and underwent the endoscopy. A plastic mouthpiece held my jaw ajar while a thin tubular camera was pushed down my oesophagus.
Thanks to simplified biological diagrams, a lack of experience of in situ viscera, and a general naivety, I had previously thought of the oesophagus as a clear drop to the stomach, like a stone well to some distant cavern below. It wasn’t until an unwelcome object needed to make the journey through my digestion that I came to realise how ludicrous this image was.
I had been told to breathe through my nose while the camera made its descent, but this was surprisingly difficult, and consequently distressing, when my mouth was being held open. Finally I could feel the camera had reached my stomach, where it moved around. I allowed myself to drool freely, with little choice otherwise. Air was hand pumped by the doctor to inflate my stomach for the purposes of photography, which was a strange sensation. The charming camera is also cleverly designed to extract tissue samples by cutting at the digestive wall. I did my best to keep my muscles relaxed while the doctor pushed and pulled and twisted the camera to obtain the required photos and flesh.
(Photo credit: Aviva)
At long last it was over, and after wiping away all the spit that had surfaced with the extraction of the camera I was shown the images from its adventures. I was told that my insides looked good and healthy, although even I could see the lines of damage at the exit of my stomach, described by the doctor as ‘erosion,’ which apparently suggested gastritis. I was not allowed to eat for the next two hours, and Miyoko suggested I stay in the hospital for the first hour to check that I would be okay to drive home. I hung around in the lobby downstairs, with all facial numbness gone within an hour, becoming increasingly hungry. I had slight stomach pains, which made sense as there had been some bleeding when the doctor took the samples. After waiting out the two hours, I got a cheap lunch at Yoshinoya, a substandard chain restaurant, which at that time of weekday was populated mostly by single business men. On the way home I bought food and sweets in order to hibernate and comfort eat once I got home.
Judgement Day was on 18th August at eleven o’clock. I was sat being shown, again, the images from my endoscopy, while the doctor went through them commenting that everything looked well. I grew impatient in my suspense, waiting for him to announce whether or not I had Coeliac Disease. At last he told me the results had come back negative, although as his answer had not been straightforward, I reconfirmed it between him and Miyoko a couple of times to be sure. He mentioned something about ‘percentage’; that perhaps it was the quantity of gluten that was a problem, which left me confused. I felt at a loss. If it wasn’t Coeliac, what was wrong with me? Why do I find myself doubled over in agony when I get hungry, then bloated and uncomfortable after I eat? What is it that makes my insides feel bruised, and necessitates me carrying around snacks at all times in case of emergency?
The staff asked if I wanted to undergo a colonoscopy, and I tried to ask if they thought it would be helpful. I didn’t want to go through with it, quite frankly, as it would be painful and expensive, but I reasoned that if I didn’t I would be left wondering if they would have found something useful. I came away from the consultation feeling baffled, and guilty that I hadn’t been chirpier with Miyoko. She had commented that the absence of Coeliac must be a good thing, but I couldn’t think how to tell her that this was the news I had dreaded.
We went to see a nurse who took me through what would happen on the day of the colonoscopy. I left the hospital in something of a daze, confused and upset. I completed a number of chores while still in Aizu, then got a corn pizza from Gasto, another cheap chain restaurant, that made me feel quite unwell for a long time afterwards. In the restaurant I saw people talking with their friends, and missed socialising with my own. Having worked myself into quite a state, I cried on the way home, not knowing what to do with myself. When I got back I contacted the local ALTs to see if anyone wanted to be social but no one was interested as they’d all been at work. As much as I needed human contact, I didn’t want to appear needy, so rode around aimlessly on my bike, sobbing pathetically. I ended up at the town library, and calmed down after deciding to cycle around Lake Inawashiro the next day. I went to an Aikido class that evening, and naturally felt better after tussling around with friends.
Having taken medication as required at nine o’clock the night before, I got to hospital at eight o’clock on the morning of 29th August for Colonoscopy Day. At half past eight I had a blood test, and at nine o’clock I began drinking two litres of a liquid called Niflec which I had to get through in the following two hours, in a small holding area with about six other people also enduring the same preparation. The first litre wasn’t that bad, but it tasted worse the more I consumed. The purpose of this liquid is to flush out everything in your digestive system, and I was relieved when, with another glassful to go, the nurse informed me I wasn’t required to finish it all. When the time for my procedure arrived, I was given long paper shorts, overlapped at the back to form an opening, to wear underneath a mauve skirt.
The actual ordeal was far more dignified than I had expected. You, gentle reader, might assume, as I did, that the, urm, insertion would be the most unpleasant part of the examination, but actually this was quite unremarkable. The painful part was when the camera hit what the doctor described as the ‘difficult corners’ of the colon. Perhaps, like myself, you have taken little notice of just how angular the human colon is. These turns are quite an obstacle for a camera, however thin and bendy, and cause extreme discomfort in the unfortunate owner of the colon. As the tube twisted and jabbed and pushed and pulled, I writhed silently in pain, wincing uncontrollably. I could feel concern radiating from Miyoko at the foot of my bed, while the kind doctor and a funny little old nurse made cheerful conversation about England. While I appreciate they may have been trying to distract me from the pain, I didn’t feel much in a position to engage. The examination seemed to last forever, though I’m sure in reality it was under a half hour. When the camera was at last finished abusing my insides, Miyoko told me that the nurse had been sure I was going to cry during the exam. I was glad to have proved her wrong.
Although I had worried that I would be on the brink of starvation after the procedure, Niflec is enough to suppress anyone’s appetite. I was told I had to wait thirty minutes after the procedure to eat, and my stomach rumbled like a thunder storm as I waited in the hospital lobby to ensure all would be well before I took to the road. After the allotted time, I ate a raisin and butter roll purchased from the hospital shop, and as it worked its way through my vacuous insides, it was difficult to determine whether the pains I felt were due to hunger or camera-induced sensitivity. After two hours in the lobby, I decided to head back, although my stomach still hurt considerably. At home I managed to eat two bowls of rice, and was kept awake that night by pains. The following morning I was repulsed by the thought of breakfast.
I felt awful the entire day after the colonoscopy, though thankfully it was a Sunday. When I woke on Monday morning I was quite surprised that my stomach no long hurt. I ate some breakfast and headed to work, but a growing nausea began five minutes into the drive. By the time I reached work I felt terrible. This particularly worried me as the doctor had given the impression that I would recover quickly. I rang Miyoko for advice and, after consulting the doctor, she recommended rest, and said I should only return to hospital in the event of bleeding. After Nakano-sensei did the necessary rounds for me, talking to the Vice Principle and Communicat, I was allowed home on unpaid sick leave. On the positive side, the whole phaff did cause one of the second year teachers who never talks to me to approach my desk and enquire after my health, saying he had undergone similar problems after the same procedure. Once I got home I ate excessively, and felt better. I was still suffering from stomach pains and nausea the next day, but powered through.
The results of the colonoscopy where given to me at ten o’clock on the morning of 5th September, though by this point my hopes and expectations were extremely low. I assumed I wasn’t going to receive any useful information and was sadly proved correct. The examination came back negative for Coeliac and all seemed fine. When I asked what, then, I should do, I was offered medication to relieve my symptoms. I wasn’t interested in taking anything that would only serve to mask the problem, but accepted them in order to appear compliant, and to have something in case of a bad day.
Another appointment was scheduled for about a month later, but in the end I cancelled. I failed to discern any object of another consultation, and I didn’t fancy paying for any more medical treatment. Japan does not have an NHS system; rather I paid a monthly health insurance, and whenever I received treatment the government covered seventy percent of the expense. When I first heard about this, I thought it was a great system, until I started forking out for it. While not financially crippling, the procedures cost about £50 each, on top of nominal amounts for consultations, blood tests and medication. It soon accumulates, and when no progress is being made it seems particularly wasteful. I did, though, send a gift to Miyoko to express my thanks.
After some deliberation, and with little to lose, I decided to eat nothing but rice and milk for a week, in order to be sure that I was consuming zero gluten. I was curious to know how this would affect me, particularly the nature of my symptoms. Unfortunately the results were far more adverse than I had expected; despite the fact I was not starving myself, I had no energy whatsoever, and even standing upright became a struggle. I was nauseous, felt faint, and had a constant headache, and so aborted the experiment after a couple of days. One thing I did notice, however, is that the pains I usually experience before eating appeared to stop. This has left me with the probably misguided impression that it may well still be Coeliac, or at the very least some sort of food intolerance.
It was after this disastrous investigation that I chose to abandon completely any kind of controlled diet. I started eating the school dinners and stopped questioning ingredients. Most significantly, I opted to no longer worry, which I now believe was pivotal in the consequent easing of my symptoms. Initially I scoffed at my mother for suggesting that stress might be the cause, but in retrospect it would seem that anxieties regarding my health and new occupation were magnifying my symptoms considerably.
I do not think it worthwhile to attempt self-treatment or seek further medical advice until I am back in the UK, and so have condemned myself to further years of problems. What exactly is the cause of my uncomfortable, inconvenient and, at worst, agonising symptoms is currently anyone’s guess. Answers on the back of a post card.