From the Mind of Trevor Stone

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.

As previously mentioned, I started the year with an autoimmune attack on my eye. This occurred after a month of over-extension: after a long day at work, I'd come home and spend a bunch of energy planning a trip to Australia and New Zealand, then not get a lot of sleep before doing it all again. The first sign of autoimmune inflammation, though I didn't realize it at the time, was soreness in the arch of my right foot. I chalked it up to old orthotics and added new boot inserts to the trip shopping list. I'd also been using a standing desk at work for two months in an attempt to reduce sitting-induced back pain and see if reduced slouching helped my esophagus's acid problem.

My eye recovered fully and my vision is back to 20/15; the only sign of the attack is a small "battle scar" blip on the iris. The only autoimmune blood test that came back positive was HLA-B27. This wasn't too surprising, since it's linked to ankylosing spondylitis, a condition which led to my uncle's fused spine. This antigen marker led to a referral from the eye surgeon to a rheumatologist.

After getting help from my parents to figure out all the causes of death in my family history, the first rheumatology appointment resulted in a diagnosis of psoriatic arthritis (a relative of ankylosing spondylitis), a prescription for meloxicam as needed, an NSAID (similar family ibuprofen, but with longer duration and more powerful per milligram), and instruction to get x-rays of my spine and pelvis. The x-rays showed signs of calcification of my spine and SI joint, so I had another rheumatologist appointment to talk about chronic disease management and treatment options. Basically, my immune system works too well, so it attacks various parts of my body like joints, skin around my scalp, and occasionally my eye. Biologics are the big-gun drugs for autoimmune diseases, which are expensive and increase the likelihood of serious infection. They sound pretty scary, so I decided to focus on "diet and lifestyle" and NSAIDs for a while to see how far I can get with adjusting my environment and routine.

So yeah, that was January. I averaged a health-care office visit every other day, but by the end of the month I wasn't feeling too bad. In February we spent two weeks in Maui, where I was able to do low-impact activities like snorkeling, scuba diving, hiking, mini golfing, and hanging out on the beach. Eating was still a bit of a challenge: the acid reflux and esophageal challenges in swallowing that were my main health problem in 2015 persisted, so there were a lot of rather slow meals. Then, half way through the trip and the day after a hike on the wet side of the island, I started to feel a bit sick, maybe a mild viral or bacterial infection. That night I had a crazy intense acid reflux experience, preventing me from sleeping all night. Around 3:30 I took a famotidine (Pepcid) pill that I'd been prescribed but hadn't really used. Two and a half hours later, we got on the ferry to Moloka'i. With only a few thousand residents, no stoplights, and a laid-back culture, Moloka'i is a great place to feel crappy. I started feeling better, and acid issues started to fade. Remarkably, I've had hardly any acid reflux in the three months since returning, though I've still got some swallowing challenges.

My mom gave me a copy of The Anti-Inflammation Zone by Barry Sears, the creator of the Zone diet. The book explained, to a moderate degree of satisfaction, how pro- and anti-inflammatory responses work (arachidonic acid versus eicosanoids and other long Latin names). Sears's primary recommendations, repeated over and over, are the Zone diet and high-dose, high-purity fish oil for EPA and DHA. I found his discussions of the diet kind of annoying, particularly since his extensive biography wasn't footnoted from the text, so I couldn't tell what was part of the diet plan because of sound science and what was present arbitrarily. The fish oil recommendation, on the other hand, seems to have solid science behind it. I've been taking fish oil for a couple months, currently around 2 teaspoons per day (~3 grams of ω-3 fats), and eating salmon and herring whenever I get the chance. The EPA doesn't seem to have done much for my foot/ankle/SI joint inflammation, but my psoriasis symptoms seem to have improved, perhaps from the DHA. During the winter I was drinking a lot of homemade chai, with the goal of increased intake of the anti-inflammatory ginger and turmeric. I even brewed a tamarind turmeric galangal brown ale. Keeping a crock pot of warm chai has been less appealing as the weather has gotten warmer.

I've been back and forth on the meloxicam. The side effects so far haven't been too bad&endash;mostly mild dehydration from my kidneys working hard–but stomach issues and intestinal bleeding are possible. When I take it for several days, my ankle/foot pain is a lot less, and I think it may help my esophageal troubles. After taking it all last week and experiencing very few choking incidents, I stopped taking it over the weekend. The last two days have featured moderately increased foot pain and some distressingly intense swallowing problems (leading to unpleasant regurgitation), so I'm taking the drug again in the hope that my eating challenge can be addressed by reducing inflammation.

Emotionally and intellectually, I've been adjusting to a lifestyle focused on eliminating stress, reducing voluntary commitments, and enhancing physical health. My natural tendency is to overcommit and prioritize tasks over sleep, exercise, and hygiene. That's a good recipe for accumulating inflammation, so I'm learning to say "no" and prioritize my own health over being helpful all the time. I've also been riding my bike (yay springtime!) and more regular about stretching on the floor and not sitting still for hours, though I've been in basically the same position in my hammock for the last two and a half hours of blogging. The nice thing about chronic illness is that if I don't do things right today, I can get back on target tomorrow.