It started about five years ago with an ordinary stomach ache after eating late and poorly — a speedy meal en route from a client visit in Wisconsin with several coworkers. I felt like maybe I’d eaten something that disagreed with me, and thought really no more of it. Except, I kept getting sicker.
That night, I thought certainly I’d vomit, or at the very least I’d spend a not-inconsiderable portion of my evening in the bathroom. No such thing occurred, but the discomfort in my body continued. My gut felt raw and painful, as though I’d consumed many cups of coffee on an empty stomach, and my stomach filled with what I thought was gas, except it was in a really weird spot. Rather than the typical lower abdominal fluff of my lengthy experience with daily human digestion, this bloating was in my midsection, between my belly button and sternum. I felt like someone had filled me to painful expansion with air. It felt like something inside of me might tear or burst.
Over the next three weeks, it got slightly worse, and slightly better, depending on conditions I couldn’t plainly discern. I made an appointment with my general practitioner, an allopath I trust and respect. As I prepared to head to the appointment, I said to my husband, “This is crazy! I can’t believe I’ve been this sick for three weeks!” What a mouthful of macabre prescience: I would remain that sick or worse for the next two years.
The doctor suggested I had gastritis — inflammation of the stomach lining, likely caused by stress. And I had stress. At that moment my whole world, and the whole world, were on fire. My husband had just been diagnosed with stage III colorectal cancer, my father landed in a memory care unit and promptly began kicking everyone’s asses like he was a fantastically confused Chuck Norris, and I started a new job. Some other stuff happened, too — read about it in the essay “Mousecanceheimer’s,” if you’re a sadist and the summary here isn’t enough.
Also, I don’t necessarily handle stress well. I’m just not a chill person. For example, right now I’m worried that a dream I had last night might be a dangerous portent for someone I know, whether or not another weasel will get stuck in our bathroom drain (yes, another weasel), or if Stevia is secretly carcinogenic. And I’m not even fretting. This is a recreational level of disconcertion.
So if you had encountered me at or around this date in 2016, you would not have found a calm and steadfast person. You would have found a person whose psyche most resembled that scribble mark over Linus’ head, or J.K. Rowling’s Obscuris (stop being a huge transphobe, J.K. Rowling). I was stressed. Also, I handle stress by becoming a robot. Think, C3PO, but with nail polish and a gigantic scribble mark over my head. This means I would be an excellent team captain during a zombie apocalypse, very much on the ball, making sure everyone had their melee weapons at the ready (bats with nails, naturally — the Dick’s Sporting Goods answer to medieval morning stars), and that no section of the plywood and diamond-guard perimeter fencing had been breached. I’d be really on top of breaching. Zombies love breaching. I’ve found, through years of cinematic research, that breaching is the number one way zombies infiltrate a human compound, so I would take a really strong position on perimeter maintenance and nail bats. My point here is that I’m vigilant. (My therapist says I’m hypervigilant, but she probably just says that to make me feel more accomplished.)
So what the doctor said made sense. I was indeed under duress. They recommended I take a three-month course of Prilosec, a proton-pump inhibitor. The science behind these things is amazing: they stop the last step of the acid-producing cells in the gut lining, which limits the amount of acid produced in the gut. (Go read about proton pumps and be astounded.) This is great, if your problem is too much stomach acid, generally, which can cause a host of nettlesome problems, like reflex (GERD, affectionately), or abdominal pain and bloating. It can also help you heal from the inflamed stomach lining of gastritis, giving those tissue layers a break, and time to heal.
I was nervous about taking it for so long, because my dad had Alzheimer’s disease, and recent studies had linked the two (this has since been disproven, indicating another interesting correlative link, instead. Read about that, here). But I took it, because I trusted my doctor, and needed relief: I was starting to lose weight, because eating was so painful that I’d often eat much less than a normal portion. Moreover, the nausea I generally felt before and after eating, coupled with the pain and abdominal distention were miserably conditioning me to expect pain from food. I’m as good a learner as the next metacognitive creature: I learned to fear food.
A note here: I will continue to refer to the abdominal distention phenomenon of my experience as “bloating” in spite of the fact that the word “bloating” is quaint and diminutive in the face of what the episodes actually feel like. At its best, it generally resembles the mild water retention of premenstrual syndrome or hormone fluctuation. But at its worst, it feels as though your insides are splitting apart. It ranges from making a lean person look four to five months pregnant, to emergency-room pain. As illustration, I didn’t wear any pants aside from a specific type of seamless, waistbandless legging for four years. This was so that, as the day progressed, my pants could expand to fit around my burgeoning waist. (Curses! I missed the Zoom pantsless era by mere months!)
I started taking the Prilosec immediately, and it helped within days. The constant burning, cramping sensation softened, and went away. But after about a week, a strange thing started to occur. After eating, my stomach felt like a plastic bowl — an immobile, stiff thing in which my meals sat, intact, for hours and hours. Eventually, my stomach would sour, and begin cramping. I continued taking the medicine for another month before, in desperation, I began searching the internet for what was happening to me.
The internet, as we all know, is a dangerous place full of Marjory Taylor Greene and people sprouting their own chickpeas for hummus. (WE’RE THERE RIGHT NOW, WATCH MY SIX.) Searching for your symptoms online is often the rapidest demonstration of confirmation bias that could be offered: even the shrewdest and most discerning researcher becomes Jim Carrey’s character in The Number 23, spotting their symptoms in an ever-crescendoing litany of ailments, until at last, inevitably, they are dying of air cancer, the most deadly cancer of them all. I didn’t start with Dr. Google, is what I’m trying to say here. I just didn’t have any other recourse.
Within an hour or so of incrementally refining my search terms as I learned more about human digestion, I found a website that described exactly what I was experiencing. It detailed what I had as small intestinal bacterial overgrowth, or SIBO: read the very initial post I found here. (Shoutout and gratitude forever to Dr. Mark Hyman and his crew: I can’t thank them enough for putting that information out to the world for free. And for those of you who need an allopathic clinic to say the same thing in other words, the Mayo Clinic, a somewhat well-known allopathic medical clinic, defines it here.)
SIBO is an overgrowth of bacteria in the small intestine, a place that is normally bereft of certain types (and certain population densities) of bacteria. When those relatively benevolent types of bacteria promulgate in the small intestine, food travelling through the small intestine is fermented there, causing gas, pain, bloating, and often nausea. So, my whole dance card.
I called my general practitioner back and made another appointment, this time to discuss the ailment I was certain I had. I wasn’t able to get in to see my family doc, but instead saw another physician at the same clinic. When we sat down to discuss what was happening, I handed him the articles I’d printed out from the internet (doctors LOVE this). He was remarkably gentle, saying, “I believe you. But this isn’t something we can treat, here.” He recommended I get a colonoscopy, just to rule out anything more serious, and I agreed.
If you have not yet had the pleasure of undergoing a colonoscopy, let me tell you, it’s awesome. As in, biblical. You chug a viscous, flat, orange drink (very ironically named ‘GoLytely,’ which is patently not what you’ll be doing for many hours) in increments every ten minutes until you’ve consumed a full half-gallon of the delightful beverage (if you find yourself still craving the vomitous flavor of the cocktail, don’t fret: you have to drink another half-gallon in the morning).
And then you wait. You wait as your unsuspecting stomach stretches to accommodate more liquid than any night of beer drinking has ever challenged it with. You wait while the liquid communicates its chemical message to every cell in your gastrointestinal tract, and then you wait as the whole 20 feet of your intestines do everything they know how to do, suddenly and simultaneously.
If you’re a human, you’ve had diarrhea. This isn’t like that. This is like discovering your body has an emergency eject feature for your bowels, and food you don’t even remember eating (are those beets? And you haven’t had corn in four months, what the fuck?) is projected from your body like so many test pilots from plummeting F15s. You don’t run to the bathroom; that’s a myth. You stay in the bathroom. There is only the bathroom, for the next few hours. When you finally go to bed, in a state of shock and awe, you will do so with deep trepidation, knowing that any notional control you thought you had over your bowels is illusory.
So I did that. The colonoscopy was easy, because I was asleep. It’s a little upsetting that I don’t remember a stranger threading several feet of camera and tubing into my hindquarters, but all in all, I think that’s for the best. The results of the scan were mild gastritis, and an unremarkable intestinal tract (sick burn, gastro department). In other words, nothing. Great? So what the hell was making me so sick?
After the procedure, a strange thing happened: my symptoms basically went away. It was miraculous. I felt silly, as though it had simply been stress the whole time, a psychosomatic journey to the literal bowels of my being. What I didn’t put together was that the GoLytly had eliminated the bacteria from my body: the bacterial population in my small intestine was small enough that I didn’t feel bad. At least, not for a few weeks.
By the end of a month, however, all my symptoms returned, and I was sicker than before. I had started losing more weight, and, distressingly, hair. Within the next few months, I had lost about a third of my hair, and the outside edges of my eyebrows. I confess to being less sympathetic toward men losing their hair than I might have been before I had this experience because men run the world and losing hair seems like a scale resetter. But while I continue to resent the imbalance of power between men and womxn, I no longer scoff at the male ego enduring balding. Now I scoff for other, more substantial reasons, like trophy hunting and those really tall trucks.
I have always had very low blood pressure — I like to think of my veins as the canals in Venice, my hemoglobin lazily rowing from one place to another singing “That’s Amore” — but began to have dizzy spells. I’d crash into a wall, or have to squat down and sometimes lie on the floor, often in inconvenient locations. Finally, I instituted a protocol in which I stood up in three stages: first with my head hung and my hands on my knees, then head hung, hands loosely at my sides, then upright. It was dumb. I brought these new symptoms up with my doctor, and they tested my thyroid hormones, or “T-levels.” All came back relatively normal — within acceptable range, anyway.
I became more and more sensitive to food, too, my diet narrowing at an alarming rate. Within a year, I was eating kale, swiss chard, red and orange peppers, meat, rutabagas, carrots, one brand of corn tortillas — no more than two a day — and zucchini. No other grains, no grain substitutes. That’s the whole list. Hit me up if you need two years’ worth of recipes composed of only these things. (Related: I’m not sure I can ever eat beef stew again.) I affectionately referred to my most common meal as “meat pile.”
I didn’t take all this lying down: I was fighting for my health every step of the way. I sought help from naturopaths, who knew about SIBO and wanted to help, but couldn’t because Minnesota law prevents them from prescribing pharmaceuticals. I saw chiropractors who pulled my stomach, massage therapists who manipulated my viscera, and acupuncturists who gently filled me with needles. Here’s a list of what didn’t really work: Biocidin, grapefruit seed extract, MicroDefense, digestive enzymes, Undecyn, kinesiology, homeopathy, betaine (hydrochloric acid), eye-movement desensitization and reprocessing/trauma counseling (this worked like gangbusters, but for other things, and that’s a whole ’nother essay), Berberine, oregano oil, Prilosec, meditation, Pepcid, and the Paleo cleanse/diet. Everything helped a little, but nothing stopped me from continuing to get sicker. I was steadily losing hair and weight, and having a harder and harder time thinking clearly. I couldn’t remember anything: passwords, appointments, social plans I was truly excited about. My brain just couldn’t hang on to them. I felt like I was constantly battling a head cold or sleep deprived — everything was harder than it should have been.
Finally, in May 2018, after two years of progressive illness, I woke at 3 a.m., so bloated and in so much pain that I couldn’t sleep, and I sardonically Googled, “does anybody ever heal from SIBO?” The top result was a blog post made by a woman named Anna Holden. In it, and in several ensuing posts, she painstakingly detailed her own years-long battle with SIBO, and the path she had finally taken to get free of it. Holden is a clairvoyant and spiritual counselor, and I don’t give a hot shit what anyone thinks of that. She’s remarkable, and she saved my guts, which might well have saved my life. She’s since removed the blog post, but replaced it with an exhaustive interview with the doctor who helped her defeat SIBO, and ultimately, helped me do the same. Find that podcast, here. Be forewarned: the doctor in question, Dr. Sabrina Kimball, speaks like some kind of genius auctioneer. Listening to this podcast is a bit like listening to a Ted Talk on 4x speed. She’s brilliant, amiable, and terrifically compassionate, and her mouth, astonishingly, is actually moving at a pace significantly slower than her wonderful brain. Thank heavens for recordings, and that merciful pause feature.
I contacted Dr. Kimball, and had a free consult. In it, after describing my journey to that point, I asked her simply, “Do you think you can help me?”
“Yes,” she replied. I booked an appointment, and tickets to Seattle, where she was located. I was struggling so much with my thinking that I was sincerely afraid to travel by myself. I didn’t feel confident that I’d be able to do it, and felt apprehensive about being able to recall the discussion with the doctor in the visit. My sister traveled with me, to make sure I didn’t end up in balmy Boca Raton, selling Mai Tais in front of the Sunglass Hut.
Dr. Kimball walked into the exam room, and after prodding at me, asked me to detail my current symptoms. I’d been in the office for less than 15 minutes when I told her about my hair loss. Her head popped up from her notes. She asked, “have you been tested for Hashimoto’s?” I thought I must have been — I told her everybody loved my huge thyroid: It had been large my whole adult life. I told her it was probably because I had been a swimmer. Muscular neck? She furrowed and shook her head. I explained that my T-levels got tested basically every time I had a physical, and had just been tested in the past year. She shook her head. “Not just T-levels. For Hashimoto’s we rely on antibody tests, patient reports, plus T-levels. All together. You’d know if you’d been tested.” I told her I didn’t think I’d been tested for that.
After I’d rundown all my symptoms, she began. “There are three different types of SIBO: hydrogen type, methane type, and hydrogen sulfide.” I thought for a moment that I might cry. Not only was I not carrying printouts of webpages, desperately waving them at doctors, but she knew about it already — so much so that she was detailing the nuanced variety of flavors it might come in. I had, during one of my naturopath visits in Minnesota, paid some $400 for a SIBO gas test: kind of a kissing cousin to the GoLytely experience in which a person drinks a liquid designed to feed the unwanted bacteria in one’s small intestine their favorite treat, fermentable sugars. The offending bacteria ferment it, producing gases like hydrogen, methane, hydrogen sulfide, and carbon dioxide. The gases travel to the patient’s lungs, where they can be expelled as breath, which the patient blows into little glass tubes (they’re adorable) designed to trap the gaseous emissions originating from the gluttonous bugs lurking in their duodenum. The breath samples are timed to ascertain where in the digestive tract the gases are being produced. The whole shooting match takes a little less than two hours. It’s neither fun nor fast, two things one would hope for, considering how expensive it is.
Dr. Kimball evaluated the results of that breath test and informed me that I had combination hydrogen/methane-type SIBO. For reference, a positive test would be hydrogen or methane greater than 20 ppm (inside the 120-minute test window), or one’s hydrogen or methane is over 20 ppm at the start. My test result was 140 ppm, hydrogen/methane combined. Dr. Kimball didn’t look impressed, although she did explain that while I technically could treat this with herbal antibiotics, at my positive level it would take years to eliminate, and since I was already malnourished she wasn’t sure I’d be successful in my treatment. Meaning, I might die. I was against that, and told her as much.
We decided to go the pharmaceutical route instead: two weeks of rifaximin and neomycin, the former to eliminate hydrogen-producing bacteria, and the latter for the methane-producers. She also tested me for Hashimoto’s disease, and within hours, had contacted me to tell me I did, in fact, have Hashimoto’s. The test for antibodies was positive, although those notorious T-levels were technically within range. On reflection, matching symptoms with previous experiences, I think I’ve had Hashimoto’s disease since I was 16. That’s when the first physician noticed how enlarged my thyroid was and I began cyclical hair loss periods.
We had opened a credit card expressly to pay for the cost of everything. I anticipated I’d need to pay close to $1,200 for the antibiotic needed to treat me, plus airfare, plus hotel, plus crazy food. We were prepared for a huge financial hit. But because naturopaths in Washington are classified as physicians (which they are), rather than non-traditional healthcare hopefuls, my insurance paid for the visit. The pharmacy had a special coupon for the antibiotic, which was almost entirely covered by my insurance. All said and done, we paid less for the whole thing than I was paying for two months of care with the Minneapolis-based naturopath I was seeing, and I went from taking literally 63 pills a day, to four.
I’d like to tell you that healing from this point was fast and easy, but it was neither. After the antibiotics, I had to introduce a special spore-based probiotic, and carefully rebuild my gut lining and flora brick by brick. Any use of non-steroidal anti-inflammatory drugs or bout of stomach virus reset my clock, and I would flame up again, which necessitated returning to my very basic diet (meat pile), and beginning the whole process again. Avoiding stomach viruses was impossible: I have children. They puke more than a Las Vegas bachelorette party. I returned to the start more times than I can count.
Dr. Kimball recommended a low FODMAP diet while I healed, slowly reintroducing foods. FODMAPs, for the novice, are fermentable oligosaccharides, disaccharides, monosaccharides, and polyols: all fermentable sugars (the stuff that bacteria love). Eliminating them doesn’t kill the bacteria that’s causing the problems. It just creates fewer symptoms, which can make a person more comfortable. (The only way to starve out those bugs is to do a specialized liquid nutrient diet. It is hellish and expensive, and works some of the time. Definitely consult a doctor who knows what’s up, i.e., can describe all three types of SIBO.) For me, this meant that adherence to the diet settled my gastritis, but that I had to keep gently nudging my body toward comfort with a variety of foods (see you in hell, meat pile!). During the 18 months — you read that right — of healing, I slowly reintroduced food, working to build my tolerance to foods my body reacted to out of habit. Did you know your body can react like it’s allergic to foods it remembers being hurt by? It can (what a hoot!). Dr. Kimball had me reintroduce food very slowly so that I could gently reacclimate my body to a well-balanced diet.
This part suuuuuuuucked. Imagine stubbing your toe. Now imagine formulating a plan to stub your toe at steadily increasing force and velocity for a week, in hopes that you’d condition your toe nerves to get comfortable with their new life of stubbing. It was kind of like that, with one major difference: it worked. (Whereas the stubbing thing categorically would not.) Dr. Kimball also had to respond to a variety of bullshit happening in my body during this food reintroduction period: I badly injured my back and relied on NSAIDs and other painkillers for a year, which beat the resilience right out of my guts. I had to rebuild with a staggered course of Prilosec, L-glutamine, cabbage juice (you heard that right, and it’s only slightly less macabre than it sounds), and supplements, but eventually I could eat more and more food. I’ll never forget the first day I could tolerate white rice, nor that holiest of days in which I discovered I could eat gluten-free brownies and pepperoni pizza. Now, the only thing I can’t eat is gluten, full stop.
This is miraculous to me.
I also now own a veritable boutique full of wide-leg jeans, all of which feature a bit of stretch, but are essentially normal human pants. One could not do yoga in them, or high-kick. I couldn’t be happier about this.
That said: I’m not and probably never will be able to eat without regard for what I’m eating. Were I to, say, eat pepperoni pizza twice daily for three days, I would start to feel gross, and would need to be careful with my gut lining for a week or so, feeding my gut tissue as much as my cravings, to bring me back to right. Also, once you’ve had SIBO, it’s very likely you’ll develop it again at some point. I understand this and live with that in mind, being careful with my diet, and feeling very grateful for every month I remain healthy.
I’m sorry I keep writing the stupidest, grossest essays. In fairness to me, the stupidest, grossest things keep happening to me, and as a captive of my own constructed reality (we’ll eventually get to the fact that neither reality nor time actually exist, but let’s get through the gastrointestinal tract, first, shall we) I either write about them, or attempt an essay entirely composed of chit-chat. Are you prepared to chit-chat for 3,000 words? I didn’t think so. 3,000 words of chit chat is like a Minnesota filibuster: maybe you can produce 3,000 words of nonversation, but you patently should not.
The truth is, if you are one of the 10 to 15 percent of humans suffering from irritable bowel syndrome and you’re reading this, I wrote this for you. I see you, and know something about what you’re dealing with. I know that it isn’t silly, or simple, or cute, like kitteny little burps and unexpected farts while giggling. It’s debilitating, demoralizing, and so painful. But even though every body is different, and every person has a unique prognosis, there is so much hope. I came here to tell you that you may not need to stay miserable and malnourished, eating a box of rice crackers of beef jerky for lunch every day (I know people doing this) trying to find another great leggings outfit and crunching down Culturelle like it’s candy. Nor do you have to accept that food will always hurt you. There is help, and there is hope. Don’t give up.
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