I was going to drink the worm eggs. There was no doubt in my mind--if I could get my hands on them, I’d have no trouble getting them down. It’s like knowing there’s bacteria in my cheese or beer: They're tiny and who cares, and without them I wouldn't even want to ingest this. Through a Trojan horse of a gulp of Gatorade, the pre-worms would slither through my innards till they hatched and latched onto my gut lining, triggering a self-serving (but secretly me-serving) immune suppression that would make me stop attacking my intestines (IBD is the medical equivalent of "stop hitting yourself"). Until their two-week lifespan passed and it was time for another dose of Citrus Cooler.
Hopeful headlines were popping up every week in national magazines and newspapers (and still are*), touting the “gross” worm cure. It started around 2007, when I was still newish to my diagnosis — two years ago, I’d quickly graduated from steroids to tamp down my first official flare, to trying and failing 6-MP, to fighting my insurance for the privilege of Remicade. Which stopped my horrifying fistula problem in its tracks and made me feel great for all of two weeks. But then I was back where I currently am — wanting my new biologic medication to put me into that fabled Remission trance I’m supposedly tracking down, but having no energy to drive to buy all the toilet paper I keep burning through. Wanting there to be some sort of solution that was cheap, not made in a beaker, and wouldn’t someday maybe give me cancer (but good luck proving that’s what gave me the cancer, so no John Grisham-style payout).
But the articles apparently already knew how I felt about the worm eggs. Blech! Who would want to drink worm eggs?! There’s got to be a better way! Unfortunately, all of us with IBD are already living in the infomercial black-and-white tilty-cam “before” world. We are absolutely ready for that solution that will *keep all the lids from falling on our heads when we open the cabinet* save us from financial and gastrointestinal ruin.
Blech! Who would want to drink worm eggs?! There’s got to be a better way!
These stories never actually interviewed someone with Crohn’s; they just interviewed themselves (NOT desperate for remission) and found they’d rather drink their Blue Blast neat, not on the “rocks.” I’ve never met anyone with IBD or a loved one who has it who, when asked if they’d drink microscopic healing worm eggs in sports drink (and I have asked dozens of people), said anything but a “probably” or “definitely.” We have suffered far more indignities (rectal exams in front of med students) and gross-outs (stool sample collection, especially with C. diff). We’ve charged MRI co-pays to our credit cards, and skipped MRIs because the card was now maxed out. We’ve almost passed out from our guts blocking and twisting, our dinner attempting to pound its way through in the night, us half-crawling on the floor to reach our emergency medication or the phone to call 911. We are strong. Crohn’s is a battlefield.
But the doctors and pharmaceutical C-suitees in these worm-egg articles inevitably swoop in at the end to save us from our weak moment. Right when we were about to drink that affordable, yucky cocktail … they let us know they’ve had a better plan all along. Obviously, they say, worm eggs are unpalatable and also harder to standardize, and so naturally we’re using this worm-egg knowledge to develop a prescription drug to sell to you instead. In, like, 12 years. Or never. YAY!
I started off annoyed but still very excited. I told everyone the worm eggs were gonna save us. Over the course of many years, seeing them say the same thing every. damn. time. I became livid. I emailed the lead researcher on the initial worm-egg study, and repeatedly got his form response, no matter the thoughtfully researched questions I included and the wary comment “I’ve already received your form response several times; please don’t send it to me again.”
Yeeeeeeeeears later, when the worm eggs finally did reach Phase II trials, they were a bust — no better than placebo for most people. Was it that only certain people within a population were helped, and the effects wash out at the large-scale population level? YES, actually; apparently that was the case. "Patients with the most severe disease showed improvement, he said, but there were not enough of them to reach statistical significance." Could I have been one of those few patients helped? Could hundreds of the sickest of us been helped? Did they do it wrong and insist on trapping the worm eggs inside pill capsules?! I tried to let it go — I moved on to truly alternative medical therapies, and then back to mainstream. I was vaguely bummed for a few days, then didn't think about it much any more.
But I saw the leeches story in The New York Times last month, with essentially the same doctor/pharma quote:
"Most American patients 'would prefer a pill or something else without the yuck factor,' said Dr. Jerk**, a former blahblahblahblah
We have come no further toward realizing: Leeches are not gross if they help your *whatever* -- and leeches are 10 times more gross than invisible worm eggs. Just a few months ago, I would've also been livid that they were proposing something "un-natural" instead of the worms. But I'm too tired and sick for that now. I just want to feel better, and I want whatever shot/pill/fungus/vampire will do it best for the lowest cost with the fewest risks. And if cheap black slimy vampires worked on me, I know I'd be OK with that.
But then again, others may feel differently. I’ve eaten bone marrow foam, sushi and ceviche, rabbit, and fish eggs. But this is a puny list, and one cherry-picked from a lifetime: On a weekly basis, I buy my chicken in neatly trimmed breasts wrapped in plastic atop agricultural maxi-pads, and I prefer my beef ground until I no longer recognize it as the muscle-fat amalgam it is. As a kid, I’d gag while unsuccessfully attempting to eat eggplant or even carrots. Mushrooms still horrify me a little. In sum, there is no good summary for what grosses me out and what doesn’t, except maybe that the one thing I can’t stomach is a gristly or tough texture to my food.
Leeches aren't gross if they help your IBD.
It’s not that I doubt there are people who genuinely could not make themselves gulp down worm eggs, just at the thought of it. My own mother is one, for example. And if you asked me to chew up a buffalo testicle, or even a piece of cooked chicken gristle, my whole torso might start involuntarily heaving.
But I fully recognize that not everyone is like me. And as much as I’d like to enforce a mandate that all chicken sold in America be lean breast meat with the fat and tendons excised, I know this wouldn’t be fair to the millions of citizens (including my husband) who drool at the sight of a piece of dark-meat fowl stuck to a gelatinous hunk of biological insulation/medical waste.
No one should be able to decide for ALL patients what the best type of treatment for ALL of them is. If Humira injections and helminth eggs each work for some people, let the squirmers avoid worms, and let gaggers avoid daggers.
*The articles tend to be a lot better now, with a patient perspective included or even the focus of the article, which is awesome! Most of the articles I've linked to here actually do a good job. I am not having a lot of luck finding online versions of the infuriatingly glib ones from the prior decade.
**Even more accurate than his real name
***Available for interview whenever you're quoting a doctor about a disease's patients who has no idea what those patients actually want