Table 3.

Defining success in disease: representative quotations from selected posts

Theme: Defining success in disease
Minimizing symptoms	3A: “All I really want is to take the right steroid & eat a big bowl of spaghetti without choking to death.” 3B: “Once I started taking omeprazole in the morning, my symptoms took about 6 weeks to go away. Beyond taking the pills, having EoE currently does not affect my life in any way.”
Objective improvements	3C: “I took budesonide for 3 months and was very consistent with both time of day (not sure that matters) and making sure I took both doses correctly. At my first endoscopy they were unable to get the scope down, and after treatment my esophagus was measuring at a normal size and 0 eosinophils from biopsy results.” 3D: “I also take budesonide (4 vials per night) in a shot glass and mix with 4 packets of Truvia®… My EOE doctor changed me to this regime and my last endoscopy in March, I had zero eosinophils! Wooo. Took freaking forever to get to that one point. I remember choking on my own spit at one point.”
Adapting to symptoms	3E: “I know everyone’s battle plans are different and conditions for each person are unique to them, but for me, I have difficulty swallowing (a ringed esophagus with a permanent narrowed stricture), I’ve had several upper-endos and every time the doctor is like, here take these drugs for the rest of your life, oh yeah, and take these other drugs (steroids) and just keep forking over money to us. I said no… for me, I didn’t want to go that route… I was diagnosed with moderate to severe EoE... I have been to the hospital a couple times now for food bolus impaction because of the ring, it sucks, but I have adapted as best as possible and I am always aware of what I’m eating, drinking, doing.”. 3F: “I also skipped the regular endoscopes. It felt too invasive for me. I can feel food going down, I know if it is going down easy, needs some help (water) or worse. Perhaps I’m a bad patient but that felt right for me:)”
Acceptance	3G: “I wish I had adjusted my thinking much earlier in the process. You’ll need to adjust your definition of ‘normal’. It’s a manageable but chronic condition. Take all the steps. Do dilation if you need it and can. Take your meds religiously. Try an elimination diet to identify and remove the root cause of the reaction, if possible. But do not neglect the condition. And don’t expect that things will be “normal” in the process. The good news is that once you reset your expectations, routine, and what/how you eat, you’ll have minimal problems. And you’ll find joy in trying new and interesting foods that you might not have otherwise. Not to mention the interesting social dynamics that get created when you no longer center your socialization around food. It can be a positive journey.”