Learning how to cope with a body in revolt
A few days before Thanksgiving of last year, I was buying a suitcase at a small, family-run store in South Williamsburg, Brooklyn. While getting a thorough luggage demo from the shop owner, sharp, hot cramps hit my stomach out of nowhere. Hard. I quickly chose a rolling bag and wheeled it home as fast as I could, doubled-over and gasping for air all the way, praying that I wouldn’t publicly shit myself.
I spent the rest of the night trekking from my bed to the toilet, over and over and over again. I was used to gut pain and stomach aches — something I’d lived with my entire life — but this was unlike anything I’d felt before. My insides were being shredded, pulled, lit on fire. The cramping was so intense, it was as though my body was trying to rid itself of my intestines through some sort of disgusting birth. The next day, my mouth and throat erupted in throbbing sores. I chalked it up to extreme food poisoning or flu, took a handful of Imodium and Tylenol, and clenched my way through a flight to Illinois.
Things got worse at my parents’ house. The pain and cramping escalated. I couldn’t eat and could barely speak. While my family celebrated Thanksgiving, I stayed in bed except to go to the bathroom fifteen, twenty, thirty times a day. I wearily asked my mom to take me to the emergency room after filling the toilet bowl to the brim several times with nothing but bright red blood. The ER doctor ran through a list of questions (“Have you eaten anything weird?” No. “Are you sure it isn’t menstrual bleeding?” Um, yes.) and ordered IV fluids to help with dehydration. He sent me home with broad-spectrum antibiotics and no certain diagnosis.
I continued to decline. The bleeding accelerated, and the antibiotics made me throw up. Increasingly weak, I had several accidents trying to get to the bathroom. As a proudly independent (and easily embarrassed) young woman, I was mortified. My mom and step-dad hauled me back to the ER, and I was swiftly ambulanced to a different hospital where I spent the next week in a haze of meds and tests.
I couldn’t have predicted it at the time, but this was only the beginning. The following months brought hospital stay after hospital stay, rounds of different drugs, multiple diagnoses, and a life-saving fecal transplant (that’s right—someone else’s poop transferred to my digestive tract). This wasn’t something I would, or could, simply “get over”; it would ultimately change the way I think about my body, my health, my relationships, and my life.
A colonoscopy, biopsy, and several scans confirmed the diagnosis of Inflammatory Bowel Disease. IBD, not to be confused with IBS, is a chronic digestive disease caused by a combination of genetics and environmental factors like stress or illness. Essentially, something triggers the body’s immune system to view the digestive system as a invader — so it tries to get rid of it. The disease works in a pattern of “flare ups” and remissions, and it’s hard to know what exactly triggers the flares and what exactly will work to stop them. Most IBD patients have tried a plethora of drug combinations, including steroids, antibiotics, immunosuppressants, and anti-inflammatories.
Both Crohn’s Disease and Ulcerative Colitis fall under the umbrella of IBD. While Crohn’s affects the entire digestive system, UC is contained to the colon. IBD can cause (get ready for a long list) severe pain, ulceration and bleeding through the digestive tract, nausea, diarrhea, dehydration, fatigue, mouth and throat ulcers, responsive arthritis, eye inflammation and vision problems, anemia, malnutrition, and skin disorders. People with IBD have a significantly higher chance of developing digestive cancers, and many have to get parts of their digestive tract removed and/or resectioned. Despite a growing number of diagnoses (the CDC estimates 1.4 million people in the US have IBD), the disease is still not all that well understood.
Now, I grew up in the world of Z-Paks and amoxicillin. Everything that could be treated with antibiotics would be gone in 10-14 days, and outside of allergies and a month-long illness my freshman year of college, I’d been a generally healthy person. It was hard to understand the idea of “chronic.” I began reading and researching from my bed, frightened by the statistics on bowel surgeries, cancer, and life-threatening complications like toxic megacolon (which sounds like some sort of villain from Transformers). When I’d get really distressed about the potential outcomes, my mom would rub my hospital-socked feet and remind me, “That’s not today. Just get through today.”
“Not today” became my mantra.
I started a combination of prescription medication, vitamins, and probiotics, changed my diet (no caffeine, no alcohol, no gluten, no dairy), and promised to manage my stress levels (lolz). The bathroom trips and bleeding lessened, and I gained back a bit of weight. The arthritis inflammation subsided, and finally, after another week at home, I felt strong enough to fly back to New York.
I found a fantastic gastroenterologist (GI) at Weill Cornell who, after more tests, decided that I had “indeterminate IBD” (which basically means I have signs of both UC and Crohn’s, and we have to see how my disease progresses over time to make a firm diagnosis), as well as celiac disease. Celiac, which you’ve probably read about with the growing popularity of gluten free diets, is an immune response to gluten. Consuming gluten makes the immune system attack the digestive system, resulting in the destruction of the intestinal lining. If I “get glutened,” it usually means throwing up or spending a couple of days on the toilet (or both). There’s no cure, but avoiding gluten helps. My doctor thought it likely that I’d been living with celiac for some time, which would explain my lifelong stomach problems and food sensitivities.
I was relieved to have a more solid diagnosis and to have found a doctor I trusted. As overwhelming as it was to face a lifetime of unknowns, gaining back even the slightest bit of health made me confident that I could handle it.
I tried my best to resume a normal schedule, but after two weeks, I fell ill again — even worse than before. The raging diarrhea returned, joined by vomiting, a high fever, intense muscle and joint pain, painful eye inflammation, and a frighteningly bloated abdomen. I couldn’t get to the toilet fast enough to throw up, so I kept a collection of Walgreens bags next to my bedside. I’d vomit in one, tie it off, grab another. A few times, I shit myself while barfing. Unable to care for myself and truly afraid I might perish, my mom flew to New York. She decided, one way or another, she’d get me to Illinois where I could receive medical care and stay with her indefinitely.
I don’t remember that flight at all.
Back in the hospital, the doctors ran a range of tests. A stool sample revealed that I had contracted Clostridium difficile, or C. diff, a contagious and extremely hard-to-treat, spore-forming bacteria that’s often found in hospitals and nursing homes. The bacteria releases toxins in the gut that attack the lining of the intestine. C. diff infections range from mild (diarrhea a few times a day) to severe (severe diarrhea and cramping, fever, dehydration, increased white blood cell count, abdominal bloating, and life-threatening inflammation). According to a USA Today report, C. diff infects nearly 500,000 people each year, and 30,000 died from it in 2012. (To put that in perspective, 32,000 died in traffic accidents.) That’s historically high, according to the CDC, due in part to increasing antibiotic resistance.
Before I’d even had a chance to fully process the IBD diagnosis, I was now riddled with a serious bacterial infection. I was promptly isolated and started on Vancomycin, a strong and expensive (nearly $2,000 per course) antibiotic. My family and the hospital staff were the only people allowed in and out of my room, and they had to be in full gowns, gloves, and masks. I felt like ET after he’s quarantined and surrounded by figures in HAZMAT suits. The doctor made it seem as though the infection would easily go away with a round of antibiotics, and not knowing much about C. diff at the time, I believed him. On Christmas Eve, I was released and spent the next couple of weeks resting at my mom’s house. To ensure I didn’t pass the deadly infection on to anyone, I bleached the toilet repeatedly after using it. The thought of making a family member sick kept me up at night.
With two days of antibiotics left, I convinced my family that I was well enough to return to New York. In reality, I felt like 40% of my healthy self, but I was anxious to get back to some sort of normalcy. Four days later, I wound up in the ER with a raging recurrent C. diff infection. The doctors gave me another course of Vancomycin and reassured me that it usually takes two rounds to wipe out the infection. Fast forward two weeks and a hospital stint later: another positive C. diff test. Clearly the bacteria camped out in my already-compromised gut was resistant to Vancomycin, so my GI switched me to a newer, even more expensive ($3,500 for 20 pills) drug called Dificid.
Those dark months—which I’ve now nicknamed “The Lost Winter”—were spent doing little else but sleeping, working from home, and taking cabs to and from doctor’s appointments. Going anywhere required mass quantities of anti-diarrheal medicine (which only makes people with C. diff sicker by holding in deadly toxins). Even on antibiotics, I clocked hours in the bathroom and remained frail. My hair started to fall out and weight loss left me skeletal. Horrified at the thought of passing the infection to a coworker or friend, I remained isolated, and shared the details of what I was going through with only my closest family and friends. Contracting C. diff while still reeling from the chronic diagnosis rattled me, and I’d occasionally scribble my unraveling thoughts in a journal.
An entry from late February reads: I remember my dad telling me about a hospital stint in the 70s when he was fighting foodborne hepatitis. According to him, the doctors predicted he’d be there for weeks. He said he meditated for three days and got to go home. Now, I have no idea if this is true or not — my dad was fond of fantasy and exaggeration. But it has me wondering… Could I harness the power of my mind to rid my body of what ails it? I am so desperate for health — sustained, long-term health. I keep imagining a strong, sinewy hand reaching into my mouth and down my throat, plunging into my guts and pulling out the sickness that lives there. When it emerges, it’s covered in black, stinking ooze, and I am suddenly lighter. And I think, “That was easy!” and skip along on my way.
Another from March: These days are about waiting for sleep. Waking, waiting. The hours in between are fluff, filler, meaningless. In sleep I can truly live — I am away from the body that I am so desperate to escape. Something in it is broken, something has changed inside of it, never to be repaired — and here I am, trapped.
Another, one sentence: No one prepares you for the isolation of sickness.
By mid-March, I’d been through two more rounds of Dificid and every kind of probiotic on the market, and was still testing positive. Not only had C. diff destroyed my already-weak digestive system, but the months of antibiotics wreaked havoc on my circulatory and immune systems. While attacking C. diff, the antibiotics had also wiped out all of my good bacteria, leaving me unable to fight off infection. My GI knew I was quickly deteriorating, and repopulating my gut with healthy bacteria was the only chance I had at recovery. She decided to move forward with a fecal transplant.
A fecal transplant is just what it sounds like: the stool of a healthy person is transferred — via colonoscopy, endoscopy, or naso-gastric tube — to the gut of a sick person. The healthy flora are able to populate the unhealthy gut, overtaking the C. diff bacteria and creating a new system of balanced microbiota. The idea behind fecal transplants is quite old (the first medical record of it dates back to the late 1950s), relatively cheap, and extremely effective. A study published in The New England Journal of Medicine in January of this year found that 13 out of 16 people treated with fecal transplants were cured of C. diff. Two of the remaining three were cured with a second transplant. The results were so impressive that the researchers found it unethical to continue the other study group on antibiotics, and they received transplants as well.
So why aren’t fecal transplants the first line of defense against C. diff? Simple: money, honey. Drug companies can do little to capitalize on or patent human feces. It’s highly unlikely that, without an opportunity to make money, transplants will get the research funding they deserve. Without more research, they remain controversial — a lot of doctors won’t perform them, and some C. diff sufferers resort to at-home transplants. To further complicate things, the FDA tried earlier this year to regulate transplants by classifying human stool as a biologic drug. That means doctors would have to get an IND (Investigational New Drug) application before performing a transplant, slowing down the process and delaying life-saving treatment. Thankfully the FDA backed off, but it’s possible they’ll attempt regulation again in the future.
My first step was finding a donor. Doctors recommend your donor be your gender and close to your age, healthy, and have not taken antibiotics in the past six months. No one in my family qualified (my mom had taken antibiotics too recently and my older sister was pregnant), and I was much too embarrassed to ask any of my friends for a turd donation, so I settled on my 63-year-old step-dad. But after talking to the doctor and learning that gut flora is significantly diminished with age (the donor cut off is 65), we were back to square one. Not wanting to risk the transplant failing, and not wanting to lose the appointment I’d secured, my family settled on my nine-year-old niece.
Next, we had to explain to a nine-year-old what the hell all of this meant, and what would be required of her. She’d have to get a bunch of blood tests, as well as give a stool sample. She’d have to fly to New York with Mommy and Dana (she couldn’t say “Grandma” as a toddler), who would collect her poo. Understandably, she was scared of the process and embarrassed because, well, she’s nine and everything is embarrassing. She was worried her poop wouldn’t “save me.” But she came around, bravely going through all of the required tests. My hero.
Last, I had to purchase supplies. I’d stay in hospital housing the night before the transplant to prep, just as you would for a colonoscopy. This means fasting and then flushing everything from your system until you shit nothing but crystal clear liquid. I bought special laxatives for the flush, as well as Imodium to take right before the procedure. (This helps calm the bowels so you can hold the new flora as long as possible.) I also had to buy a blender. To minimize the poop handling, the doctor requires you to bring the donated stool in — I’m not making this up — an unused blender. That way, the staff can simply add saline and mix. (I’m sorry if this ruins smoothies for you for life.)
A month later, my mom, sister, and niece arrived in New York, tired and frazzled after one cancelled and one rescheduled flight. We all checked in to two rooms at the “hospital hotel,” which kinda sorta felt like a hotel, but most definitely smelled like a hospital. My sister was six months pregnant, but god love her, she managed to turn the trip into a mini-vacation for my niece. They made their way through Times Square and the Met while I prepped. My mom stayed a few floors down, periodically checking on me through the evening and following morning — transplant day.
I can’t quite describe the feeling of walking down a packed New York sidewalk knowing your mother is next to you carrying a human turd in a boxed-up blender, but the hilarity of the situation worked to calm my nerves. My mom handed off the box to the nurse and retreated to the waiting room while I changed into a hospital gown — a uniform that had become familiar and strangely comforting. As the anesthesiologist prepped me, I quietly cried. I was exhausted. This had to work. And it did. It took the doctor less than an hour to snake a colonoscopy scope through my intestines and spray them with the life-saving poop/saline mixture.
Upon waking, my appetite came back almost instantly. I was able to enjoy—truly enjoy— breakfast with my mom the next morning. The results of my biopsy (taken during the transplant colonoscopy) revealed less damage than expected, and though C. diff had caused plenty of harm, the doctor didn’t think I’d require any intestinal resectioning or removal. Over the following months, my body continued to adjust to the new flora, and I experienced a lot of bloating and cramping (symptoms like this are common post-transplant). My guts were in near constant motion, as though I could feel them rebuilding. When I tested negative for C. diff three times, I elatedly called my friends and family to share the news. It seemed the worst was over. Finally, finally, finally.
Because I caught C. diff so early in my first flare, I wasn’t sure what living with just IBD would be like. Now, I have good days and bad days, good weeks and bad weeks. My immune system still isn’t what it used to be—colds and flus knock me out longer than they used to, and if there’s something going around, I’m sure to catch it. I’ve come to accept that my body is different than it once was, and I have to be patient while learning how to best care for (and appreciate) it. I continue to take a big handful of pills everyday, watch what I eat and drink, and try my best to minimize anxiety (the mind and the gut are very closely linked, even for people with perfectly normal digestive systems). I have “mini” flare-ups that make my joints burn and my mouth fill with ulcers. I pay the price for accidentally eating gluten once in awhile. Too much anything—stress, food, fun—takes its toll on my body.
With that said, I’m lucky in countless ways that aren’t lost on me. I have great insurance that covered the majority of my six-figure medical bills and prescription costs (praise Gawker!). I have access to some of the finest and most innovative doctors in the world. I have fiercely supportive family and friends who did all they could to help me get better.
Sure, I’m frightened of what the future could bring. It’s possible that I’ll pass IBD on if I have children. It’s a reality that someday I may live with an ostomy pouch. I might have to fight colon or some other form of cancer.
But not today. Not today.