Living with GERD

picture credit: thanks lev.

living with GERD

really if you can see past the pain and nausea, not being able to eat anything you like, constant pill popping, inability to participate in heavy physical exertion, and the spectre of cancer looming in your future, it's not all bad living with GERD- even when you've got it bad. i've got it kinda bad - i have something called barrett's esopha-something. the sad part is that even though i have it, i still can't spell it. i've even got pictures of it, and i still can't spell it. it's considered a precursor to esophageal cancer, which makes me a real hit with the insurance companies. my barrett's is short segment, and we caught it fairly early. they used to think that meant less likely to end in cancer, but research has recently revised that opinion. now it just means less photogenic.

how i got here

i've had it all my life which is exactly why i didn't know until i was 24. when you get used to something you can't even tell it's there after a while. i had constant heartburn, but because when they describe heartburn to you as something more than you feel normally i first realized it about a week after starting medication. i had constant nausea, but i just thought i was an existentialist. my diagnosis came from telling my first doctor (i've had four in this process) that i thought i was an accidental bulimic- and that it weirdly enough seemed worse when i bent over. she gave me that yeah-right-this-is-gonna-be-the-hardest-diagnosis-of-my-life look and told me that i had acid reflux. she had no idea how right she was.

it amounts to this: the top valve of my stomach is really, really lazy. it has totally obtained slack. it keeps this blissful state of relaxation pretty much all the time- so if you turn me over the contents of my stomach will slowly but surely slide out my nose. it is for this reason the single most important thing you can do if you have GERD is stay upright. being upright means more than all the drugs you can take, and probably as much as not eating things that give you lots of stomach acid. you may have already guessed that sleeping presents a challenge - but no fear. you can always sleep at an angle that give you back problems.

don't they make a pill for this?

when that acid get above your stomach (and this happened to everyone occasionally) you get heartburn, indigestion, sometimes nausea. most people take a tums or some such, which is fine as long as you don't take very many. for GERD sufferers anti-acids are an evil and nefarious trap. you see, in the long run they encourage your body to produce more acid to counteract the effects of taking anti-acids all the time and expose you to more damage, not less. so if you're taking them for days and days, bite the bullet and see a doctor.

if you're too stubborn to see a doctor the first level treatment of GERD consists of "lifestyle changes" and cimetidine, better known as tagament. this is actually a terrible idea since tagament is a pretty useless drug that interacts with almost everything else. zantac and pepsid work better and are a whole lot safer. that really does it for most people... probably though if you look at the lifestyle changes you'd rather see a doctor. thing is if you have GERD the doctor is going to tell you to do them anyway.

but if you just have to be special like me, it's just not enough. zantac worked better, but i knew it still wasn't doing the trick. i could tell by the copious painful vomiting- that's a dead giveaway. (btw, vomiting isn't usually a symptom of GERD, but it is for me. your millage *will* vary.)

i've moved onto bigger and badder drugs- most notably prilosec which inhibits the production of stomach acid. prilosec has made a ton of difference - i still vomit, but now i vomit a weird white foam instead of acid. it's far more pleasant. also, hopefully my esophagus is healing- you see we discovered not all was well. there are three other drugs besides prilosec in the same class, called proton pump inhibitors. did you know your stomach made subatomic particle? neither did i, but apparently it's good when it stops. the other three are: prevacid, aciphex, and protonix. somehow taking these sounds like regularly dosing myself with star trek villains. "i am protonix, and you are unwelcome in this sector!"

back to the story

my doctor at this time, dr. curmudgeonly-old-guy, tested me and i told me i had severe gastro-esophageal reflux disease.. i asked him what severe meant and he blinked and said "bad". i said thank you, roget. now does bad mean i've got an increased risk of cancer? "oh no" he said incorrectly... "it just means anyone that wants to find out what you had for lunch can turn you over and see." a small note- in general he would be right, but i just had to be extreme, and there was no way to know without an endoscopy. he had only ordered an upper gi, which could tell roughly what the mechanics of the situation where but not how extensive the tissue damage was. an upper gi is where they watch you drink a barium milkshake while flipping you back and measuring how much tries to get away. 2-3 days later you will pass a perfect barium-colored cast of the inside of your colon. you probably didn't want to read that, but it is better knowing it in advance.

then i got a gastroenterologist, and he took things more seriously, in a way that involved a lot of demerol.

one endoscopy later

my gastroenterologist called and said i had barret's esophog- (nope still can't spell it. thank god i've never turned up with lymphoid interstitial pneumonitis). it was no real surprise, as a matter of fact i said it with him. it's a bizarre disorder where years of acid damage piss your esophageal cells off so bad after they burn away they start coming back as stomach cells. it's like your stomach is beginning to subvert the rest of your body. mine's ambitious, next year it's invading poland. this sounded kinda cool, morphing into a giant stomach, right up to the cell dysplasia part. cell dyplasia (and this goes for anywhere, not just the esophogus) is what your cells do right before they go cancerous. cancer is bad, so turning into a giant stomach quickly lost its appeal. still, it's fun for freaking out people at parties, where i get to toss out lines like "oh no, i couldn't have the spaghetti. i'll morph into a giant cancerous stomach." really, it's a miracle that i've ever made it all the way through a date.

the best things i can do to prevent myself from getting cancer are take my pills faithfully and change everything. we call this "altering our lifestyle in a healthy manner" at the doctor's office, and i'm convinced they have never tried it. it's hard, but in the end i like knowing that i am doing something to preserve my health- that i have this little bit of control, a way to fight back. a brief overview:

"you call this a lifestyle?"

  • sleep on an angle- get a wedge and keep your head well above your stomach, all the time.
  • stop eating tomatoes, citrus fruit, fats, caffeine, alcohol, and pretty much everything else you like. but no, really- it means don't eat acidy foods at all for obvious reasons, and don't eat fats, caffeine, (this includes chocolate) or drink alcohol cause they can even further relax your good-for-nothing valve.
  • eat really small meals and more of them. if you put time between your quantities of food your stomach can empty down instead of up, which is nice.
  • don't go to bed right after you eat. put a few hours between eating and lying down
  • most important: learn to listen to your body. you really can tell when a highly corrosive acid is creeping up your throat, especially if you found out that's what you've been feeling this whole time. if you learn to pay attention to what your body doesn't like it becomes easier and easier to slip into routines that don't irritate your stomach.

from my personal experience:

  • keep a notebook for a short time. i found out much more how to listen to my body by writing down what happened each time i ate. i even worked out a point system for food, but then again, i'm neurotic.
  • skip on aerobics. biking still works, but that's because you're pumping one bit of your body in isolation and not trying to turn yourself into a pump action acid fountain.
  • eat when you're hungry. i mean this, maybe don't eat much but give your stomach something to work on and not just have acid sitting there and stewing.
  • if you're going to throw up, just don't fight it. my experience was that if i fought and fought to keep my meal down it would eventually fight back, and put me through a whole lot more acid pain. instead, i try to take note of the lesson which usually was:
  • don't eat mexican food. believe me i've tried, but in the end it simply doesn't work.

aren't we good at surgery or something?

there's a knife fix for GERD. it is a lapriscopic procedure that involves taking a bit of your stomach and wrapping it around your sphincter to tighten it up. recovery seems really different for different people. you can get it too tight, which is bad but reversible, and afterward it's apparently really important to eat small meals... but it seems to really work for a lot of folks. is it the answer? will it help heal the barrett's? i don't know, i don't even know for me specifically... but i intend to start asking.

"there ought to be something you can buy..."

there are a lot of options for GERD, and no cures. for someone with barrett's it's important to keep up getting looked at, because the risk of getting one of the more lethal cancers is something like 40 times what it normally is. though to be fair, it's still hardly assured... but the chance of living through it goes way up the earlier you catch it. if you have GERD and no barrett's, it's worth all this effort and more to avoid getting barrett's. in the end this, like almost everything else, is about how much you decide to value your life.