The Hardest Part is the Best Part

As I’ve mentioned in previous posts, I’ve seen a lot of doctors and tried a lot of things to treat my SIBO. Every protocol, treatment, special diet, supplement and pill I've tried in the last two years and one month has ultimately been for one simple reason. This is all about food for me. Of course, I'm not thrilled to be bloated, gassy or occasionally doubled over in pain, but I can generally avoid the worst of my symptoms by avoiding the foods that cause them. And to be completely honest (and maybe a bit TMI), I’m so used to being constipated I really don’t know what I'm missing. When it comes down to it, what I mean when I talk about "healing" or “getting better” or "going back to normal" or “wanting my life back” is that I want food back.


I know we all “love food” but I love food, and I always have. One of the first things my parents will say when they describe me as a child is how adventurous of an eater I was; how I was eating shrimp cocktail before I could walk, sushi from a booster seat and escargot as a 12 year old visiting Paris for the first time. One of my dad's favorite anecdotes describes me refusing to eat at Friendly's on a family trip to Cape Cod because "I don't eat at Friendly's on vacation" and proceeding to order the most expensive steak on the menu at the restaurant I made him take us to instead (I said I loved food, I didn't say I wasn't also a brat sometimes). In my pre-SIBO life, I could count on one hand how many foods I genuinely didn’t like. My only collections were of cookbooks and kitchen appliances; nothing made me happier on Christmas morning than a blender or a cast iron pan. Even in my longest, darkest days of eating nothing but soup for weeks on end when I was on the GAPS diet for a month and a half last winter to "heal my gut," the only things I was scrolling through on my Instagram feed were photos of friends and photos of (artfully plated) food.


At my very worst a little over a year ago, there were exactly twelve foods I felt were safe to eat, and they all came in soup form. I became genuinely afraid of food; what was once one of the most essential and enjoyable aspects of my life turned into a fear of being in real physical pain. I would slurp my soup for breakfast, lunch and dinner while coworkers around me ate chips and cookies they found on the free table at the office that "didn't even taste good” and talked about the cool restaurants with live octopus they were going to that night. For months, I didn't go to restaurants or see my friends. I barely left the house for any reason other than to go to work because it took too much mental and physical energy just to feed myself.


After exactly 54 days of soup for every meal, I stopped being able to tolerate the soup itself, and I was forced to finally move forward. I remember my first real meal after almost two months of a practically liquid diet was a roasted chicken with roasted vegetables; the chicken skin that was crunched instead of spooned was one of the most delicious things I've eaten to this day. Then, through the agonizing process that is reintroducing foods after an elimination diet, I carefully added foods back one by one. This meant a small amount of the food on day one (about a tablespoon), followed by a slightly larger amount, and after four days in a row of gradually increasing to a normal portion, if the food didn't cause any symptoms, I could consider it successfully reintroduced. Then I would wait another four days, and start on the next food. In the meantime, I kept eating the few foods I knew were safe (eggs, meat, fish, carrots, ginger, turmeric, tomatoes, kale, collard greens, swiss chard, peppers, squash), only finally, gratefully, no longer in soup form. It was electrifying then just to be able to chew.


I can vividly remember how fragrant and nutty that first tablespoon of quinoa was after not eating any grains for months. My first sip of hot, bitter coffee mixed with cold, creamy coconut milk was a near religious experience (I missed coffee almost more than food). After not being able to eat most spices for a while (aside from ginger and turmeric) because a lot of them are "high histamine" and would irritate my eczema, the pungent smoky-sweet flavor yielded by something as simple as cinnamon was hard to believe. Oatmeal tasted like toasted milk, almost sweet and thrillingly chewy, even eaten without any of its usual toppings and fanfare. The hardest part of having SIBO became the most surprising and wonderful part of having SIBO. You can’t listen to your favorite song for the first time again, or read your favorite book, or experience your first fall into love. Well I did it. I did all of those things. With melted cheese and a bagel and coffee and soft serve ice cream and oatmeal and pizza and rosé and avocado and garlic. And it didn't just feel like I was getting back something I once knew and loved; it was a whole new experience I had never lived before. Ultimately, some of these foods had to be taken away again but for the time I had them back, however long it was, it was bliss. If anything good has come out of this whole thing—aside from improved overall health, better knowledge of myself and my body, decreased stress and anxiety, no hangovers, better sleep and yadda yadda yadda (I could even credit SIBO for finally getting me to quit smoking after 10 years)—it’s been those near miracle moments I’ve experienced tasting something again for the first time after being forced to avoid it for months or even years.


When I went on that trip to Paris when I was 12, my mother offered more than once to let me have a glass of wine because I was in Europe and it was both legal and socially acceptable for me to do so, but I declined until I could have a glass that was served "on white tablecloths." As high maintenance as that sounds, it had to feel special or it didn't seem worth it, and once we found those tablecloths, I chose a Kir Royale as my single alcoholic drink on that trip because it was festive and fancy. Re-introducing foods post-GAPS diet was no different. I made sure that my first bites of (raw milk) cheese in months were eaten on a blanket in Central Park on one of the first warm-enough days last summer as notes of Elvis Costello playing live floated from Summerstage. Avocado returned to my life savored slowly on the deck of my parents' lake house. This past September, the only thing I really did for my 31st birthday was have pizza, buffalo chicken style, eaten in bed while slightly tipsy from the one celebratory cocktail I allowed myself. The most recent real bagel I ate was consumed only after a special trip to Zabar's made by my boyfriend (as I mentioned, he's a saint) and driven 3.5 hours outside of the city to his parents' scenic farmhouse in the middle of nowhere upstate New York to be topped with lox and cream cheese and paired with one of my favorite cups of coffee from the one restaurant that exists in that small town. I drank my most recent glass of wine—rosé, of course—after abstaining for months, on a boat at sunset. That's why we have photos of most of these occasions—they still always feel like a really big deal. 


This is not all to say that I appreciate every single bite of food I put into my mouth now—sometimes I still eat things out of necessity, that don't taste all that great, and I don't always chew as much or eat as slowly and thoughtfully as I should. I don't appreciate every bite but I do appreciate far more than I would have two years ago. And if I could choose, no, I would have never ended up with SIBO. But I've learned so much more about food and myself and my body in this experience than I ever could have possibly imagined. I have never tasted a sweet potato as sweet, and I may never taste it that way again. One of my favorite quotes from one of my all time favorite movies is "the sweet is never as sweet without the sour," and I've never understood those words as palpably as I do today. As much as I've always loved food, and as much as it still has the ability to hurt me, I've truly never loved it more than I do now.  


The Seven Plagues of Red Hook

As frustrating as it may have been hearing doctor after doctor tell me for years that my health problems were all in my head and nothing more than symptoms of stress, I still believe everything I've read about SIBO that lists stress as one of its main causes. In fact, a large majority of my treatment "protocol" (more on that later) to heal my condition has centered around lowering stress more than anything else. As I mentioned in my last post, I still don't know how or why I ended up with SIBO when I did and what were its exact causes. If these things were easier to figure out, the condition wouldn't be so hard to treat. What I do know is that one of the most stressful times in my life occurred not long before my SIBO diagnosis, and I can't help but wonder if it had something to do with it, if life really can be that neat sometimes.


It took three years of living in New York for me to find a place that felt like home. When a friend of a friend posted on Facebook in the fall of 2012 that the apartment next door to him and his wife in Red Hook was opening up and promised a full sized backyard, fresh eggs from their pet chickens, and built-in friends, I couldn't break the lease on my tiny windowless room in Williamsburg fast enough. When I brought up the idea to my mother and she started googling “Red Hook,” what she found worried her so much she enlisted one of her oldest friends—whose family happened to grow up in the area—to give me a tour of the neighborhood in her giant SUV to see if I was sure I could picture myself living there. When we drove around after dark, it did look potentially seedy and possibly less safe than what a straight laced girl from a very small town upstate was ready for (at that point my rental history in New York consisted of a doorman building on Roosevelt Island and an apartment on the same block as the Graham L stop in the center of North Williamsburg), but then we had dinner at one of the most charming restaurants I had ever been to. And when I met up with my potential new neighbor after dinner, he introduced me to what would become my favorite bar in New York to this day


I moved into 30 Huntington Street on the east end of Red Hook near the BQE a few weeks later, days before I had to move right back out again to stay with a friend for a week to avoid what would prove to be the very real threat of Hurricane Sandy. I was as far away from the water as you could get while still living in Red Hook, but the whole neighborhood was an evacuation zone, and while my neighbors stayed put through the storm, I didn't want to to take any chances. Unlike most Red Hook residents, I was lucky. The only thing that happened to my apartment didn't actually happen—an unfulfilled robbery marked by a dusty handprint on our front window. Most of the rest of the neighborhood was shut down in varying degrees for over a year, but the way the neighborhood picked itself back up and dusted itself off with scrappy togetherness and mostly hand built parts was one of the many things that made me fall in love with the place almost immediately.


One of the most memorable nights of my life occurred a few weeks after the storm, when my roommate took me to a bar called Sunny's for the first time when it was only open occasionally and you had to enter through a falling down back hallway. Even though it was about as far away from the subway as you could get in Brooklyn and felt like another world entirely separate from New York City, the place was so packed you could barely walk through it. And in the center of the back room, framed by a piano and walls lined with stringed instruments, I was amazed to find a circle of fifteen or so musicians with banjos and mandolins and guitars and violins (fiddles, actually, if you know what you're talking about, but I didn't at the time), playing folk and bluegrass music both haunting and hopeful without stopping for hours and hours. For years after I moved to Red Hook, I shuddered to think how differently my life would have turned out if fear had kept me from moving to what turned out to be such a magical place.


My early memories of Red Hook are full of live music—in that back room at Sunny's, in the old timey theater of Jalopy, in friends’ living rooms and strangers’ kitchens. There were more nights than I can count spent drinking High Lifes and smoking cigarettes around the fire pit in the backyard of Ice House, of endless backyard barbecues at 30 Huntington, pop up dance parties attended by the likes of Aziz Ansari and James Murphy, DJ sets inside the giant warehouse of Pioneer Works, old movies on Valentino Pier, climbs to the top of the broken down New York Dock building (now made into shiny new condos) to see stars and views of the city for miles, impromptu play and poetry readings in the middle of the night in my next door neighbor’s apartment, Bloody Marys in my sweatpants both noon and night at Brooklyn Crab, hungover brunches at the old school diner tables of Hope and Anchor, Italian sandwiches the size of my abnormally large head at Defonte’s, Irish coffees that actually melted in your mouth at Fort Defiance, morning runs along the Columbia Street waterfront to the Brooklyn Bridge, bike rides to Prospect Park for free outdoor concerts and picnics and all those beach trips to the Rockaways. I was often at home but never alone—everything and everyone came to me. My friends would arrive for Saturday afternoon barbecues and stay until Monday morning, eating Cinnamon Toast Crunch before work in the backyard. My neighbor and I became inseparable, and I started seeing a dreamy friend of his who happened to live down the street. I even fulfilled a secret lifelong dream by landing a "DJ" gig for a short time at Lowlands, a bar in the next neighborhood over. I learned how to drive stick and play guitar and go to bars by myself and talk to strangers while living in Red Hook. Every single night was fun like I had never known it before, but more than that, the neighborhood felt like a secret so well preserved it didn't require upkeep, something only a select lucky few knew about and understood, and somehow, miraculously, I had ended up becoming one of those people. Most people went to Red Hook to go to IKEA. Red Hook was my whole, thrilling life. 


For years I only saw what sparkled about Red Hook, what made everyday feel like something I had never experienced before and would never experience again. What I didn't want to see, but what was undoubtedly there, decaying around the edges of my vision, were the lines of ants winding their way along the walls of my apartment and into my bedcovers, the cockroaches and house centipedes scuttling over the floors, the leaking windows, radiators and bathroom ceiling, the chicken shit covering every inch of my precious backyard and the cigarette butts covering every inch of the chicken shit, the backyard mosquitoes that bit up my legs so badly in the summer that my colleagues at the time would stop me in the hallways at work to ask if I was okay. I thought that the mouse that ended up in my hair in the middle of the night and the leak through my upstairs neighbor's apartment that destroyed my bed and rug were funny anecdotes—just part of my wild life in Red Hook—that the constant six month rotation of roommates was just the way it was in Brooklyn. I knew but didn't want to accept that the guy I was "seeing" from down the block would never want me for anything more than a conveniently located 4 AM hook up no matter how much I tried to convince him otherwise, that my married next door neighbors were not going to be married much longer.


At some point, the most blatantly toxic elements started to remove themselves from my world one by one, and my life in Red Hook started to stabilize. My neighbor finally left his wife after cheating on her for months. The guy who was never going to date me moved out of the neighborhood and brought with him his friend who had been stringing along another of my friends. I started seeing a therapist. I got a job that was important enough that it wouldn't allow for Monday morning hangovers. And not long after that, I met the man with whom I now live (in Washington Heights, about as far from Red Hook as you can get) and hope to spend the rest of my life. For a while, it seemed as if I could live in my beloved neighborhood, have the start of something I could actually call a career and a healthy relationship all at the same time. I "had it all" in Red Hook again, in the total opposite way I had thought I had it before. Until Red Hook itself finally turned on me too.


I can't remember exactly which plague came first or when, but sometime after my next door neighbor left his wife and moved out, the raccoons and possums of Red Hook moved in. I think my neighbor's wife couldn't manage care of all those chickens herself (at one point, there were eight of them), and it became a regular occurrence to hear their awful, strangled cries in the middle of the night as one by one they became food for these new inhabitants. Then one of those raccoons or possums—I'll never know which one—took up permanent residence in the ceiling directly above my bed. The scratching and dragging noises that went back and forth above my head woke me on the nights the dying chickens didn't. At around the same time, a hoard of paper wasps made a nest directly outside my bedroom window. Live bees flying around my room became a daily occurrence, and their carcasses filled my window sill to a comical degree. But what's most unbelievable of all, even to me, is that the most dangerous plague of all arrived at the exact same time as the bees and the ceiling animal—a new landlord who was willing to do anything and everything but help. As I mentioned, I had had plenty of issues with my apartment before, but as one would expect, my landlord for the previous two years and ten months of living in Red Hook sent exterminators and handymen when problems arose. This new landlord cut down all the trees in the backyard to "resolve" the ceiling animal and told me to close my window to keep out the bees.


I continued to live with my plagues in Red Hook for two more months, sleeping in my tiny living room most of the time or at my boyfriend's apartment in Harlem, thinking my new landlord might eventually come through. I don't remember exactly what made me get up on a Saturday morning and walk over fifteen miles going back and forth between Bushwick and Bed Stuy to look at apartments, but suddenly, I had to get out of Red Hook as soon as possible and for good. A week after I looked at all those apartments, I found a single dead mouse exactly where I put my feet to get out of bed every morning. I moved to Bushwick a few weeks later. Six months after that, I was diagnosed with SIBO.


Of course, it probably doesn't really work like that. Maybe the timing of everything is pure coincidence. All I know is, those last few months living in Red Hook comprised the second most stressful time of my entire life (the top spot, of course, belongs to the time I've spent dealing with SIBO itself), and the downturn in my health occurred suspiciously soon after. I will say, however, that even ending up with this condition and the varied issues that have come along with it or the fact that I haven’t been able to eat an apple or an avocado without incurring pain for years now, I don’t regret my time living in Red Hook. Maybe I wouldn't have smoked a few of those cigarettes or drank on a few of those weeknights, but I wouldn't take back a moment of that once beautiful life even if I could. And with that, let's all remember it together fondly one last time, with yes, a little playlist. To Red Hook, my first true home in New York. May I never live there again.

From the Beginning

I think my history with healthcare probably sounds a lot like that of most people who have gotten to the point, like I have, where drinking Chinese herbs seems like a perfectly reasonable solution to my health issues—the kind of people who regularly throw around words like “naturopath” and “licorice root” and who think that laying in a “therapeutic” vibrating, noise-emitting bed weekly is worth a shot. I think most of my friends and family have been hearing me refuse conventional pain killers and topical steroids for so long that they forget I tried the whole doctor thing. For years. Like a lot of people I’ve stumbled across in the digestively challenged community, my (our) doctors didn’t listen to me (us). They suggested I try to avoid stress and chew more and sent me on my way with the names of over-the-counter laxatives and gas relief medications and referrals to therapists. Of course, sometimes I can't help but wonder if I didn’t stand up for myself like I should have. That maybe if I had pushed back a little harder, things wouldn’t have gotten to the point that they did. But at some point I just accepted that chronic constipation, severe bloating and abdominal pain were my normal.

That's not to say I didn't see gastroenterologists a few times (thanks again, Mom, for coming to the city multiple times to distract me while I was on a strict popsicle diet and get me home safely post-anesthesia!) but after colonoscopies and endoscopies came back normal and those doctors didn’t offer alternative solutions, I let it go. At the time, my symptoms were manageable. Whenever I ended the day with intense abdominal pain and a distended belly, I dealt with it by eating my fried egg dinner horizontally in bed until it passed on its own after a few episodes of Grey’s Anatomy. Maybe sometimes I had to leave work a little early and my commute home might suck once in a while, especially if I couldn’t get a seat on the train and had to stand doubled over in pain clinging to the subway pole, but that was just the way of my world. To this day, my worst GI symptoms always seem to save themselves until the end of the work day—I took plenty of time off from work for all of the colds and flus I was contracting before I changed my life for the more holistically oriented (of course, now it makes sense that with a gut so out of whack, my immune system would be too), but ironically, I can’t remember ever needing to take a sick day for my digestive issues.

I do remember being at a concert when I had an especially bad stomachache and just standing there, so I could finish seeing the show. I hobbled my way home—I think I even took a cab because I could barely walk—but whatever this was, it was not preventing me from living my life. Then there was that night I spent with a new boyfriend mostly on his bathroom floor instead of in his bed while he slept in the next room—he never suspected a thing. When I voted for Hillary, I was so bloated I could barely stand upright as I filled out my ballot, but I did what I had to do (and that one I certainly don’t regret). Being constipated for days at a time was just me! We’re all different! And my stomach only really hurt every few months or so, no big! The stressful periods and strange hormonal symptoms, "brain fog" and memory issues, anxiety, clumsiness to the point of injury, acid reflux, skin problems and consistent level of exhaustion that became my standard—all of it was totally "manageable."


The last time I remember feeling “normal” was when I traveled to London with my boyfriend and his family right after Christmas in 2015. I was able to eat whatever I wanted whenever I wanted, I could go to restaurants without researching the menu first or making complicated requests and changes once I get there, I didn't have to plan every meal in advance or obsess about food nearly constantly. In what I still sometimes think of as my past life, there were no diet diaries or food rotation spreadsheets, I didn't have to study the ingredients on every single food label, or make my own milk, yogurt or bread. In London, I had multiple English breakfasts, ate gluten ladened pastries most mornings, drank coffee AND black tea filled with conventional milk every day, and had plenty of beer and wine. It was a freedom I didn't know I had. But I also experienced constipation so bad during that trip that for the first time in my life it scared me. This should have been what a lot of SIBO folks call their “wake up call.” It wasn’t for me, not yet, but it was coming.


Soon after that trip, my every-couple-of-months pain quickly became monthly and then weekly. And that’s when I went to the gastroenterologist who would administer the (three hour) breath test that would finally diagnose me with a “severe” case of SIBO. Side note for those who haven’t already heard my spiel—SIBO is “small intestinal bacterial overgrowth,” meaning bacteria from the large intestine somehow ends up overflowing into the small intestine, usually because “gut motility” is impaired— i.e. the digestive system isn’t clearing itself out properly—resulting in that bacteria, which doesn’t belong there, eating your food, stealing a lot of your nutrients and emitting gas which causes bloating. For digestive problems a lot of the time, a diagnosis is half the battle. It was a relief after all those years to know what was going on with me, to know that it had a name, to know for sure that this was more than just stress. What I didn't know, and what that doctor did not make at all clear at the time, was how particularly difficult SIBO is to treat, how the type of SIBO I happened to have (methane) was the more complicated of the two options, how there is not even close to a standard way of treating it, that it can take years to do so, and that it s more often than not a chronic condition. At the time, the doctor who diagnosed me put me on a "six week" low FODMAP diet (more on that later), prescribed me a round of antibiotics and sent me home. The SIBO returned pretty much immediately once I was off the antibiotics, so I was put on another round, given another colonoscopy and endoscopy, which again, did not help or prove to be particularly enlightening. And that's about when I lost (most of) my faith in Western medicine and discovered a whole separate, very strange new world of holistic, naturopathic medicine, which is mostly what I will talk about on this blog. 


And how did I end up this way? The short answer is, I don’t know. I think some people can trace their digestive issues back to specific health issues or experiences—Lyme disease, overuse of antibiotics, food poisoning, surgery, etc. I've had some degree of digestive distress my whole life—my mom tells me that even when I was a little kid, if I wasn't feeling well, it was usually because of something to do with my stomach—but it became intensified in the last few years. Being on hormonal birth control since I was 18 and the excessive drinking, cigarette smoking and maniacal level of socializing that came with being a single twenty-something in New York City probably did not help what was likely already a susceptible gut. The fact that I was born via Cesarean section, that I used topical steroids for most of my young life to treat my severe atopic eczema, that I took Advil whenever I had the slightest headache and for all of those hangovers, that I was given a couple of rounds of antibiotics for my multiple oral surgeries all could have added up. The constipation I've suffered from for years alone could have led to this. (If there's anything to be learned from my experience, it's this—longterm constipation is never normal and should be addressed!) And I will say, as much as I regret all those doctors who told me that my stomach problems were nothing more than stress, I do believe completely that stress can make a "manageable" health problem much much worse. And if stress is a major contributing factor to developing a condition like SIBO, perhaps I know exactly why I got SIBO when I did. But that's definitely a post for a different day.

Healing Season

I left work before lunch three days ago to avoid train delays from a nor'easter that dropped over 8 inches of snow on New York, but today felt like spring. I was almost too warm in my dad's old leather jacket as I walked down Central Park West with my boyfriend Tom and hundreds of other people marching to protest for gun control.


Today was the first day in too long that I felt at all capable of acknowledging—much less doing—something about the horrible things that had been going on in the world around me for some time. It may sound like an excuse, but when my own world came to a quiet but absolute halt when I was diagnosed with SIBO in the winter of 2016, I felt it necessary to completely shut out the outside world right as it became more important than ever to be an active participant in it. I knew there were scary, awful things going on around me that were more important than even an intense, painful gastrointestinal condition, but I just could not face them. At my worst, it was all I could do just to get through the day.

This is the second spring in a row where I've felt noticeably better than the previous months, like I was starting to return to my former lively and vibrant self along with the physical world and weather around me. In the first days of April last year, as I went for the daily walk outside that was part of my naturopath's SIBO treatment protocol (the fact that I needed an "assignment" to leave work to go outside every day is an issue for another day), I couldn't help but feel, as too neat as it sounds, that like the pink and purple buds poking their heads from the greening ground around me, I too was coming alive again. And I was given a few months of feeling almost like myself before my SIBO relapsed. 


I know now I could relapse again, but I couldn't help but feel my hope stirring along with the season today. Today I was able to march in the sun like a normal person who had the brain space to think about something bigger than herself—something finally more urgent than the bacteria in her gut—and the physical energy to walk for hours and stand for something.

The last time I marched, it was at the Women's March on Washington in January of last year. I almost didn't make it. As I waited for my train from Penn Station to DC, I was in so much pain I could barely stand. I sat on the floor of the station sobbing, unthinking of the hordes of strangers swirling around me, weighed down by bags of food I couldn't eat because I no longer knew what was safe and what would hurt me. I felt totally hopeless and like there was no end or solution in sight to the pain I had been experiencing in ever increasing frequency for years.


I went to DC that night, and I marched because it was important and bigger than me, bigger than my physical pain. But the days after that triumphant weekend of fighting for what was right were the first days of the darkest winter of my life.

But spring came then, and spring appears to be on its way back now. I can only hope that it will last a bit longer this year, and that this will be the first day of many that I am able to see beyond my own small, still fairly complicated world, and fight for more than my health.