I spent the last three months trying to eat, trying to figure out why I can't eat, and trying to get through life without many calories.
In August and early September I thought I was doing reasonably well: after losing 20 pounds in two months, my weight had stabilized. No problems were detected with my colonoscopy or EGD. I was figuring out which food textures I could handle and felt good enough to go to Burning Man. In the desert I alternated between rough days (including passing out after building camp in the sun and then having a gin and tonic without enough water) and days where I felt good enough to bike around the Playa and get excited by people's wonderful gifts.
Eating was still a challenge; on our wedding anniversary I felt accomplished because I was able to eat a hamburger and most of the bun and only had to regurgitate once. A couple days later, I started having trouble with foods that had previously been manageable and I spent a game day unable to swallow water for twelve hours. Over two weeks I lost another five pounds and realized the treatment of acid reducers and careful eating was not moving me back towards health.
Hypothesizing that my parasympathetic nervous system
or vagus nerve
might be compromised, I saw a neurologist in early October. He recommended an MRI, so I spent two hours in a noisy box while the rest of the country was watching Trump and Clinton debate (I think I came out ahead). The MRI didn't detect any neural problems but it did uncover an unusual mass behind my tongue, so the neurologist set up an ENT appointment for me and stressed the urgency of the matter.
My ENT visit featured an endoscopy with a camera tube pushed through my nose and into my throat. This was as uncomfortable as it sounds, and managed to trigger regurgitation of my breakfast smoothie. (I was kind of excited about this: it was the first time I'd managed to demonstrate symptoms in a doctor's office. I assured him that while it wasn't pleasant, I was happy to do all manner of unpleasant actions as long as we could get data from it.) The scope got a better look at the unusual mass and asymmetries in my esophagus, but didn't result in a clear story, other than the fact that it didn't look particularly cancerous.
Wanting a closer look, the ENT called a doctors' huddle and recommended a CT scan. This was a quickie compared to the MRI. Two ENTs looked closely at it and couldn't find anything that would cause a swallowing issue, though they did discover that I have a pair of extra salivary glands. (Maybe that's why I've always done more spitting than the average person.)
On December 7th I had a long-awaited manometry study
. The previous couple days had been fairly rough from an eating perspective and I consciously didn't do anything in particular to try to improve my situation, hoping that being in bad shape would improve the chances that we'd learn something during observation. This study involved another data-collecting tube through the nose, followed by swallowing water and apple sauce while lying down. Just getting the tube into my esophagus was a challenge: my esophagus had gotten so sensitive to irritation that it was trying desperately to regurgitate this foreign object. We finally got the tube into place and I laid down, sipping water and then apple sauce while the scope recorded pressure changes along my esophagus. Swallowing with a tube in my throat was very challenging, and I don't think any of the liquids actually entered my stomach; I regurgitated a couple cups worth of goo during the process. After removing the tube, I just sat in a chair for about twenty minutes, trying (and frequently failing) to drink some water, finally succeeding thanks to a peppermint candy and time. The nurse was very supportive and empathetic, but I could tell that this reaction was far from typical.
The original plan had been to get fitted for a 24-hour esophageal pH study after doing the manometry. When I scheduled the procedure, I'd misunderstood the nature of the pH study–I thought it was going to be a wireless probe, but it was another scope, attached to a box. Although the pH tube was smaller than the first one, I reflected that there would be no way for me to eat foods like bread, fruit, and steak which would trigger my problems. Given how unhappy my esophagus was, I would've been lucky to keep down hummus and ice cream.
Last Friday afternoon, I got a call from my gastroenterologist. It was an early Christmas present in the form of a diagnosis! It turns out I have achalasia
, which is Greek for "my sphincter doesn't relax." This is basically what I'd been assuming based on the last three months of eating a soft and limited diet and still regurgitating frequently: food goes down the tube but my lower esophageal sphincter doesn't open (or doesn't open very wide), so everything just backs up until it hits a critical level and everything gets kicked out the door it came in.
I was prescribed nifedipine
, a calcium channel blocker
which is often prescribed for high blood pressure. I've been taking 10 mg before dinner and have seen a marked improvement: I can eat significantly more while sitting for several hours than I could before the drug. Regurgitation can still trigger, particularly with gristly meat. I'm also not back to normal human eating speed: a modest meal begun at 7:30 might finish at 11. I hope this will come in time: my stomach is still adapting to this caloric increase, so the parasympathetic signaling is probably still in "whoa, slow down" mode.
Wikipedia notes that primary achalasia has no known cause, though recent research suggests there's autoimmune involvement
, including one patient inventory that found that patients with achalasia were 256 times more likely to have uveitis than the control group. Hey hey, now the beginning of the year and the end of the year are coming together.
In the next two weeks I have appointments scheduled with my gastroenterologist, rheumatologist, and an upper GI surgeon. My current thought is to try the anti-autoimmune drugs
first and see if they retard inflammation in the lower esophageal sphincter. This is partly because it would kill two birds with one stone (cutting back on arthritis progression and back pain) and partly because I lost all my energy reserves this year, so I'm worried about my ability to recover from a surgery. I'll see what the experts think, though.
Emotionally, this diagnosis is a big win. It's helping me switch modes from "I my body might slowly wither away and die next year" to "there's a clear path of action to eating like a normal human again." There are still some low points though–I couldn't keep down water on Christmas morning and was in a pretty morbid mood until I was finally able to hydrate in the early afternoon and then work my way through a very soft dinner.