My battle with Achalasia... so far

It's a hard disease to swallow. This is my story of my battle with achalasia, from initial symptoms 3 years ago to surgery last week.
October 22 2015

I remember sitting at my desk at work in August 2012 eating a meat pie for lunch.  As I swallowed it I felt a lump get stuck in my throat and I had to chug some water to get it to go down.  That was the first time I remember something being wrong with my swallow.

Earlier in the year, in March, I had something go wrong with my lower digestive system.  Not majorly wrong just I was getting pain and cramping just below the belly button area.  I saw a doctor and he prescribed some antibiotics which I took for a week, as prescribed.  It seemed to a help a little, then it came back. I was thought I was too busy to return and see more about it.  A couple of months later when I did make it back to a different doctor, as the symptoms were still occurring, I mentioned this but the same antibiotics were not prescribed. I can’t remember exactly what was the outcome of that visit, but it didn’t help me any.

In late September I returned to my former workplace, where I had the time to duck out and see doctors.  I made an appointment with Dr Remedios at the Wesley Hospital in Brisbane, Australia.  I had a barium swallow performed and I couple of visits later I saw his “boss”, Professor Kerlin a few rooms down. 

Professor Kerlin was a more experienced (older) doctor with awards covering his wall. He said lectured and presented in conferences in this type of problem around the world (basically irrelevant to anything, but I thought I’d mention it).  He performed a Esophageal manometry on me.  This involves putting a small tube down my nose and throat and getting me to attempt to swallow small sips of water.  The device measured my swallow and esophageal pressure, detecting the quality of my persistalsis (the motion of the throat that pushes food – bolus into the stomach through the esophogus.  I had some pressure and action and my lower esophogeal sphincter was not completely shut.  The diagnosis was that I had a ‘general esophogeal motility disorder’ and I was told, I quote ‘Shepards Pie is your new best friend.  Drown everything in gravy.  There’s nothing more we can do for you”.   That was very disappointing to say the least because the food getting stuck and the feeling of choking was rather distressing and painful.  Everything had to be eaten slowly, in small bites and with lots of water.

I started “drowning” in my sleep at night.  Basically whatever was in my lungs when I lay down at night and the saliva from throughout the night would run back into my mouth and I’d inhale it.  I would wake up choking and coughing and cough up handfuls of water.  This went on few a couple of months in late 2014/early 2015.

In early 2015 I took up regurgitation before bed each night to clear my throat of any food.  By this time I had altered my diet to mainly liquids: Liquid breakfast and dinner with a “mushy” meal for lunch.  I could bend over and food would run out of my throat and mouth.  I’d been reading around the Internet and was convinced I had Achalasia (this reading was back in 2013/2014 too but I was more strongly convinced by now).  My wife said it was ridiculous and I should get a second opinion.

I made an appointment to see Dr Tan, another GI in the local region.  When he read of my history he said he was a student of Professor Kelin, and he was “the man” for GI disorders of this kind so he couldn’t help me any further.  I asked Dr Tan to humour me and do the tests anyway.  I went off for another Barium Swallow, which indicated I needed another manometry (of course!).  This time, rather than have the test on an antiquated machine in Professor Kerlins room, I went to the Princess Alexandra Hospital and was tested on their hitech compturised machine. 

I remember the day Dr Tan called me at work to tell me I had Achalasia.  His tone was one of bad news.  I was ecstatic.  This diagnosis meant I could finally get treatment.  I had already come to terms with having this disease.  This was in July 2015. 

After a few calls to the hospital and asking when I was going to get an appointment (I hadn’t heard back by the initial date they gave me) I was scheduled for October 13th 2015. 

It was decided that POEM (Peroral Endoscopic Myotomy) was the best treatment in my case, as I am still young and hopefully have many years of living with the degenerative disease ahead of me.  Dilation and botox are only temporary solutions that become less effective with each treatment.  POEM and Hellers Myotomy (HM) each last many years (in theory) and a HM can be performed after a POEM.

So far, 9 days after my POEM I am still in a lot of pain when swallowing and I can’t swallow large tablets very easily at all. It feels like I am being ripped apart inside.  It’s a cruel joke that for 10 days after discharge (4 more days) I have to take the largest antibiotic tablets known to man (and God).  I can feel fluids running in to my stomach though and that’s what counts.

Dr Luke Hurrigan who performed my surgery said is happy with the surgery and it was a “good” surgery. Prior to surgery he could not get is 13mm endoscope through my lower esophogeal sphincter (LES) without a lot of damaging force.  Post procedure the scope could move freely through the LES. 

One thing I’ve come to understand from talking to other sufferers of this unkind disease is that it’s different for everyone and by the sounds (I’m a type I) it can get really really really unpleasant at times for some people (if that was me I’d know by now thank goodness).  Lie on the floor scream in pain because of the spasms unpleasant. 

So far I’ve lost just short of 16 kilograms this year (100.1 down to 84.4).  I’ve lost probably 50/50 muscle and fat.  Now I just look like regular joe and all nearly all my clothes are far too big.  Once I heal up I should start putting weight back on, and I plan to return to the gym in a early December.

As they say: Achalasia, it’s hard disease to swallow.




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