Chapter 4: The Sniff Test

There always seems to be a triangular relationship between me, my body, and GPs. I’m rarely happy with my body. Not only is it off on its own agenda, but GPs want access to it without my involvement. I’m pretty sure they find that I just get in the way. I’m a curious person. I like to know what’s going on and how things work. Then I like to decide how I’ll proceed, given what I know. GPs, I’m sure, would prefer to proceed without my involvement.

So, over my life, I’ve found it difficult to manage my health with their assistance. I’ve presented myself to them with hope of relief, only to find it fizzles out and I get nowhere. Over time, I’ve come to accept that I’m a peculiar person with strange ideas and aspirations. I’ve concluded that my health issues are either too complex, or just downright weird.

There are two significant facets to my health, the story of my history and the story of my current issues. My health history is a journey of discovery that spans my life, from childhood to the present. The story of the current issues began less than two years ago. The history tells a story of positive gains from persistent searching for answers. In the current story, however, there is subterfuge and deception.

Ironically, whilst my health was improving, I was also getting worse. I was getting better because I was finally getting the hang of managing my historical issues. It wasn’t until my mid-sixties, about nine years ago, that I began to really grasp what was going on in my body. It might surprise some to learn it took me so long. But unbeknown to me, from about two years ago, I was developing a whole new lot of health issues. These new issues were hidden in the Trojan Horse of my historical health problems.

These new ailments went unnoticed while I struggled needlessly with my existing conditions. Looking back now, I realise I was actually doing really well with my historical symptoms. But back then, in the thick of it, I thought I was failing. I was losing faith in my ability to look after myself. Eventually, I decided I needed to return to face the GP. Dah dah dah dum.

By the time I got in front of a GP, I was buggered and a bit desperate. For the last two years I’d been in decline, mainly in energy, and the brain fog thickened. I’d been pretty well unable to do anything much. There were days when I had trouble staying awake. I couldn’t read anything or work anything out. I really needed to stop seeing clients; I was having memory lapses during sessions, forgetting what I was talking about. I hoped that it wasn’t Alzheimer’s and that it was just brain fog. Why didn’t I see a GP back then? Well, my general attitude was, what’s the point?

So I made the appointment and presented myself. The GP, bless his cotton socks, got quite angry at me. He sat there reading my history on the screen, becoming noticeably more and more heated. There should have been steam rising off him. Perhaps there was. For example, I have a gallstone the size of a golf ball discovered seventeen years ago and I hadn’t consulted a surgeon! Also, over eighteen months ago my PSA (Prostate Specific Antigen) was high; apparently, I’d agreed to come back in six months to test it again, and I didn’t! Plus, I was due for a colonoscopy two years ago and didn’t get that done!

Well, in my defence, I have no conscious awareness of my gallstone and was never provided with a referral to see a surgeon. I’ve had regular colonoscopies over thirty-five years and the last two were clear. I’m here now, so let’s test my PSA. The GP finally frowned and ordered pathology tests and ultrasound scans. This was a Thursday. He ordered me to do the tests the next day, Friday. I said sorry, can’t do that, it’s my son’s birthday, I’ll do it first thing Monday. And I did.

It was ten years ago when my PSA began to rise above normal. I was told then that I have a very real risk of harbouring a prostate cancer. Some prostate cancers are very deadly and most are not so deadly. I was told that you can’t take the risk. If its cancer then you need to find out as soon as possible. So back then, I gave-in to the pressure and I accepted the referral to the urologist.

The funny thing is, the urologist wasn’t the slightest bit interested in whether I had cancer or not. He had another agenda altogether, which was to treat me for BPH (Benign Prostatic Hyperplasia), which mainly manifests as pissing problems. I hadn’t come to him for pissing issues. He was not the slightest bit interested in my cancer diagnosis. So, I did not follow up with him at all, and that’s another story.

The GP who referred me to the urologist in the first place had not established, for my understanding, the connection between pissing problems and elevated PSA. In fact, I had not discussed my pissing problems with the GP because I thought of it as too weird. Back then, the GP instead had created a link in my mind between elevated PSA and cancer. Since the urologist had shown no interest in cancer, I developed a dismissive disinterest in my elevated PSA.

My historical pissing problem started in my early thirties as frequent urination. I couldn’t go for very long without needing to leak. This was inconvenient for drives over twenty minutes, and particularly frustrating when I couldn’t sustain my presence in a one-hour session with a client. By my fifties, it developed into frequent night-time pissing, sometimes I’d be up seven times a night. This was decades before the elevated PSA.

The improvements that I made to relieve my pissing problems were due to persistence and experimentation. For example, I accidentally discovered that if I ate fresh coriander in the evening I would sometimes get a pissing-free night’s sleep, or at least reduced frequency. Coriander has anti-inflammatory properties. I concluded my bladder was irritated and inflamed, contracting spasmodically and creating urgency. I read that this type of problem is common for women and linked to historical urinary tract and bladder infections (UTI) going unnoticed and untreated. I had an untreated UTI in my early twenties. So, scarring in my bladder could be sensitive to certain unknown irritants.

One main feature back then was extreme urgency. My bladder was rarely full, but the urgency was full-on. If I didn’t respond immediately, by the time I did, it wouldn’t come out, the bladder’s sphincter muscle jammed shut. I also read that this problem can come from overdeveloped muscles. I concluded that both my bladder and bladder-sphincter muscles were overdeveloped, hence the urgency and blockage. But what was causing the irritation?

By my late sixties, I concluded that I must be struggling with an irritant and consequential inflammation. I began to develop the notion that there was a common denominator to my historical health issues. I hadn’t seen any connection until I understood, irritant and inflammation.

My seemingly random remedies all came together when I observed a trifecta of symptoms. Consider, 1) allergic-like reactions in my face like hay-fever, 2) congestion from inflammation in my lungs, and 3) feeling ill from inflammation in my gut. At the time I was reading about histamine sensitivity. I didn’t want a histamine sensitivity because the only solution is to eliminate from your diet anything that you enjoy and that gives you hope. I am a person of order and comfort.

In the meantime, I have established that I don’t have any allergies. It’s important to rule out allergy if you suspect histamine sensitivity. What I do have is the trifecta of allergy-like symptoms. So, the hay-fever-like reactions in my face are not due to an allergic reaction, but it certainly could be due to sustained elevated histamine in my bloodstream.

The congestion in my chest didn’t go away even after prolonged abstinence from smoking cannabis. I haven’t smoked tobacco for twenty-five years. Whether I smoked cannabis or not had nothing to do with it. On the other hand, the elimination of bread and cheese from my diet removed the congestion altogether. It could have been due to elevated histamine from consuming wheat and fermented foods, like bread and cheese, which was my staple.

My gut issues and related headaches could also be due to sustained elevated histamine. Historically I had episodes of terrible immutable headaches, feeling ill in my gut, fatigue, brain fog, irritability, and alienation. In my thirties, these episodes were infrequent and brief; by my early sixties they became more intense, prolonged, and more frequent. It worsened over time. It crept up on me.

If I hadn’t taken action to reduce histamine in my diet, I’m sure I would have killed myself by now. It could get really bad. Sometimes I felt so sick I thought I was dying, and death seemed like a relief. Feeling that sick is the pits. Death had never seemed so attractive. I suppose you could say I was primed for the slap from the damp tram ticket.

The label histamine sensitivity or intolerance is dumb. Everyone is histamine intolerant or sensitive; that’s why our body produces an enzyme to metabolise histamine so it doesn’t linger, build up, and do damage. The enzyme is called DAO (diamine oxidase). The issue would be more accurately labelled DAO Deficiency, under the general heading of enzyme deficiency, which is not uncommon.

Here’s how it works. Inside you is a bucket. Every time you produce or consume histamine, you add to the bucket. You don’t want it to overflow. DAO is supposed to stop overflow. If you don’t have enough DAO and don’t watch your diet, your bucket will overflow. Sustained elevated histamine leads to the trifecta of symptoms.

My historical health issues became known to me as my histamine sensitivity. I was getting the hang of managing it. My diet is a challenge, but I can refine and update. For example, I recently found that I can eat bananas after many years of depriving myself. So, ten years ago, when my prostate started playing up, I put it down to inflammation due to histamine. Why wouldn’t my prostate be inflamed when everything else is? Also, why wouldn’t my scarred bladder be sensitive and triggered by histamine?

By my early to mid-sixties, generally, I got a good grip on my dietary requirements with curiosity, persistence and experimentation. Headaches reduced, gut settled, pooing became regular, energy levels improved, brain fog lifted, pissing settled to a reasonable pace and the congestion left my chest. I could see a clear path ahead. Approaching seventy, there was a brief moment of hope and fulfilment. It seemed I was at peace with my body. There was a time when I could smile at the sky. That was back then.

Two weeks later, I went back to the GP for the results. The pathology didn’t reveal much, but the day brought three significant revelations.

Firstly, prostate cancer was no longer a concern. My creeping PSA results over the last ten years raised concern for prostate cancer. The current results were an increase, but not concerning, just age-related. So, now the GP has given up scaring me with cancer.

Secondly, BPH is a major issue, and he insisted on a urologist referral. This time the scare is the threat of kidney damage and the requirement for a permanent catheter. The ultrasound showed my kidneys are okay, no damage so far. But the images of my bladder and prostate were a revelation. My prostate was humongous.

Enlarged prostate usually means one-and-a-half times normal, mine was three times normal size. It was pushing up into my bladder space, reducing bladder capacity and causing retention. The danger is twofold: urine backs up into the kidneys causing damage, and the bladder wall thickens preventing urination altogether. If I don’t see the urologist, I could end up on dialysis with a permanent catheter in my old fella. The grey clouds gathered overhead and turned black.

Lastly, during a physical exam, he made an unsettling discovery. As part of the consultation, the GP performed a routine physical exam. This was interesting; I can’t remember a GP taking this much trouble to actually look at me, so I’m giving him a big tick. He got me up on the couch, which looks more like a bench, and I lay on my back. He prodded and poked my guts, then listened to my heart. As he listened, he became animated and slightly excited. He said, “That’s interesting. When I was listening to your heart just then, I could hear your gut activity.”

“This isn’t normal?” I asked.

“No,” he said, “it’s not. It could mean you have a diaphragm or hiatus hernia. I’m ordering a chest x-ray and we need to follow this up. If it is a hernia, it can be fixed.”

I left with a referral to a urologist and a chest x-ray. At the reception desk I book a follow-up appointment with the GP. At home, I booked the x-ray for the next available appointment. I’m cooling my heels on the urologist referral. This new revelation blows my mind and gives me permission to hold off with the urologist for the time being. There is more to say on this matter.

At the third consultation, I walked into the GP’s room and saw my chest x-ray on his screen. I could see two circles in the left chest cavity. “So, you’ve been drawing circles on my x-ray?” I asked. For a fleeting nano-second I imagined that he had circled spots on my lungs, like cancer. He said, “No, that’s what’s in your chest.” I squinted closer. My right lung looked normal, with the clear outline of the diaphragm.

“So, what are those circles?” I asked.

He said, “That is your colon up there in your chest.” At that moment I mistakenly equated “colon” with bum-hole and said, “WHAT!” He clarified, “What you see there is your large intestine occupying about half of your left chest cavity.” Oh, I see. Now I could recognise the shapes. I could see that I was looking at a cross-section of my large intestine. But how the hell did that happen?

The GP agreed we need to know how it happened. He declared that it’s a recent development, in the last couple of years. Could this be why I’ve been so fatigued and foggy? “Yes”, he said.

So, there you are. Low energy and brain fog have been part of my historical symptoms all these years. I was getting good at managing my histamine sensitivity. Up until a couple of years ago, I was spending less time fatigued and fogged. Then over the last year it got worse. Well bugger me. This is one way to get better whilst getting worse at the same time.

The problem under control masked a completely new problem presenting the same symptoms. This is why symptoms such as fatigue and brain fog are called non-specific.

The GP decided to bring out some heavy ordinance. He ordered a full body CT scan from chest to pelvis, with and without contrast. Now we’re getting somewhere. I booked the CT scan for the first available appointment.

At the fourth GP’s appointment, the CT scan confirmed the intrusion of my colon into my left chest cavity, but didn’t reveal why. There was no massive tumour to blame for example. In this respect, we were none the wiser.

The CT scan raised a few questions. It didn’t tell us if the intrusion was due to a hernia or a no-responsive diaphragm. Perhaps the nerve activating the left side of the diaphragm isn’t working properly. If so, the diaphragm would have no muscle tone. This would then allow the gut to push through. If the nerve isn’t working, it’s due to something not visible on the CT scan.

Also, there was a spot on my liver. The CT scan showed a white spot, one centimetre in diameter, on its edge. We need to know if the diaphragm nerve is working, and what that spot is. We needed an ultrasound of the liver and a sniff test for the diaphragm.

Booking an ultrasound scan is easy. Not so easy booking a sniff test. Not only are sniff tests rarely called for, but the equipment needed to perform the test is not commonly available. The local radiologist did not have the equipment, but the base hospital fifty kilometres away does. I was able to email my referral to the Imaging Department and they were able to fit me in on the following Tuesday.

On the ultrasound, the spot didn’t look sinister with its smooth edges. The sonographer was cautious about giving medical opinions, so I asked directly, “Does it have smooth or rough edges?” She said “smooth,” so I relaxed. But then she said, “Let’s look at your pancreas.” She scanned in all the usual places, then asked, “Where is it?”

I have this problem with my kidneys too, they’re not where you’d expect them to be. They are fused into a horseshoe hugging my spine. Kidneys usually float out to the sides and are usually easy to find. Now my pancreas is playing hide-and-seek. “Ah, there it is,” she said, it’s high up in my ribs, jammed up there in my left lung cavity with my colon.

For the sniff test I was ushered into a large cavernous room that contained some pretty fancy looking x-ray machinery. I was asked to stand on a small platform and then the radiographer operated the machinery from behind a big glass widow. The machinery whirred and jerked into place in front of me. Then I stood there whilst I waited for the radiologist to turn up. This is another reason why the sniff test is hard to come by. The testing must be done in the presence of the radiologist. The x-ray machine streams your image to a screen, like the x-ray machines at the airports. Whilst the radiologist was watching my skeleton streaming onto his screen, he said through the microphone, “can you just do a sniff”. So, I sniffed and it was all over.

The radiologist came out from behind the glass and said, “You did well.”

I said, “Thank you, I must have a talent for it.”

He replied, in a thick South African accent, “Yes, you are a proficient sniffer.”

We both chuckled and parted company. This is an on-going story with more to come.