I have an incurable disease…

I have an incurable disease. It’s not going to kill me, but it’s already made my life miserable and promises to complicate my life going forward. This is going to be a bit of a rambling post as I work through everything, so I apologise in advance.

The diagnosis is relatively recent, from the end of August, but that’s not for want of tests and scopes. I’ve been struggling with my health badly for the last few years, and I’ve been actively hunting for a solution/cure/diagnosis for about 2 and a bit years now. I’ve never been healthy, really, but I’ve noticed a degradation over the last 4-5 years. With the arrival of my wonderful son in 2016, and with the impending arrival of a daughter in January 2019, it’s become very important to me to find what’s wrong.

First up, you must understand that my sinuses have always been a mess. I was born with a deviated septum (the bone in my nose was skew, a genetic trait), and didn’t really breath through my nose till the septum was straightened surgically (and painfully) when I was 13. Two subsequent surgeries when I was 18 and 22 were also required, but I still struggled with breathing and regular sinus infections/migraines. When I was 25, I was scoped for the first time, and diagnosed with GERD (reflux disease) and a hiatus hernia (muscular anomaly in the valve at the top of my stomach). I was put onto pills for the reflux, and carried on going. Throughout this period, I was fit and active, but often got laid out for days suddenly with sinus pain and headaches. Just part of my life- I self-medicated and carried on. I was able to lecture and work, and run a martial arts school, even though sometimes I was a little indisposed, and some times I had to drag myself out of bed for a lecture and then back to bed afterwards.

However, in recent years new symptoms have cropped up. A persistent sore throat, and regular throat infections that seem to resist antibiotics. Diarrhoea and constipation come and go. Poor sleep habits- I often wake up once or twice a night. And then, last year I start to get dizzy spells, some times accompanied by nausea. I’ve had to cancel lectures because of my health, for the fist time in 10 years of teaching. Obviously, as I passed 40 healing took longer, but there was definitely something wrong. I gained weight, both because of comfort eating and too much boozing, but also because I couldn’t maintain my previous exercise regime. Vicious circle- you don’t feel well, so you can’t exercise and don’t eat properly, so you don’t feel well…. To make things worse, in December last year, I came down with shingles. Probably stress-induced, excruciatingly painful, and with lasting effects- I took nerve damage in a swathe across my left torso, and I’m still having to treat this “post-herpetic neuralgia” with anti-convulsants 9 months on (and possibly for life). So, sleeplessness and constant low levels of pain to add to my problems.

I should note that life hasn’t been completely hell- I have a wonderful son, and I have managed to revive my academic career by publishing a number of papers over the last few years. Career-wise things are looking up, even as my health has failed.

So, in looking for a cure, I have seen numerous specialists over the last 2 years. The first ENT reckoned I had an undiagnosed food allergy, so I spent 6 months on restricted diets trying to find this elusive allergen. The surgeon who performed the first endoscope in the chair at his rooms (not recommended!) said the hiatus hernia wasn’t worth operating on, and up my medication. I wasn’t get anywhere. Then Edward, my son, needed emergency gromits for an ear infection, and we ended up with an old school ENT in an unfashionable part of town. This guy took my case on as well- hard not to, I suppose, when you have a supposedly sick infant, while the father looks like death, onto his 3rd set of antibiotics in 4 weeks for a throat infection. He sent me for very comprehensive scans and blood tests, which again came back negative. However, he suspected the problem lay elsewhere, and sent me to a gastroenterologist. Another endoscope, this time under full anaesthetic, and then the breakthrough when I underwent manometry. This was an excruciating procedure when they stick a thick catheter through my nose and down the back of my throat, then get me to swallow sips of water. I then had a second catheter inserted for a 24 hr pH study, which was less than comfortable.

Two days later, the gastroenterologist broke the news to me. Gently, I suppose. My pH was under control, no GERD. But I can’t swallow. There is no peristaltic motion on my oesphagus. Zero. Nada. The nerves have degenerated, either because of genetics or because of a virus (possibly the same bastard herpes zoster that causes chicken pox and my shingles). The condition is called Achalasia, and I have type 3, the inoperable type. It’s degenerative, so the damage happened over several years. Basically, food travels down my oesphagus under gravity during the day, but won’t move if I lie down after eating (or eat in bed). Not too bad, but the big problem lies in what happens at night.

During the night, everybody has occasional reflux events when the sphincter at the top of the stomach opens and acid escapes into the oesphagus. In normal people, that acid is forced back into the stomach by peristaltic action. In those with GERD, the acid is excessive, and some may escape into the throat before being caught and returned (heartburn). For me, the acid escapes- and then lies in the oesphagus and throat, burning the shit out of the epithelial cells. From this comes my sinus problems, the throat infections, the waking during the night, the dizziness.

There is no cure for Achalasia currently, so I need to make a number of lifestyle changes to reduce the effects. I have raised the head of the bed for a start, but I may need to raise it more. I need to avoid food and drink for 2-3 hours before bed time, which is proving more difficult. Fortunately I already avoid a lot of food that produce excess acid, possibly because of past subliminal experience. I can take a pill to create some peristalsis, but it has nasty long term side-effects. But the condition is not going to go away, and I am going to suffer with this for the rest of my life.

I’m not totally sure how I’m coping with this diagnosis. It’s nice to know why I’m struggling, but it’s difficult to accept that there is very little I can do about it. I refuse to become a hermit or some sort of self-denying monk living on gruel, but I have to make a lot of adjustments, which may or may not help. It seems fairly pointless to rant and rave, but I am definitely not a happy camper. I will soldier on…