It was September 2019, and I had been fighting a sinus thing for a few weeks. I didn’t have time to be sick, so I wanted the quick fix. The doctor wrote me a prescription without asking any questions, and without telling me that in all likelihood my sinus issues were from a virus, and antibiotics do not treat viruses.
A week later I had a routine colonoscopy screening at the hospital. By then the broad-spectrum antibiotic I was on had wreaked havoc on my beneficial gastrointestinal bacteria— you know, the good guys that run my digestion and keep me healthy. Who knows, when I was at the hospital maybe I touched an infected bedrail or doorknob, or maybe it was just dumb luck and some of these evil critters were already lurking in my gut, but somehow I was exposed to the Clostridioides difficile bacteria. Because I didn’t have any good bacteria to fight off invaders, the evil intruder bacterium C. diff moved into my colon to play house. A few days after my colonoscopy I saw my gastroenterologist and complained that my diarrhea hadn’t stopped after the colonoscopy prep, and, oh yeah, I also have this horrendous gut pain. She ordered a fecal test, and it came back positive for C. diff, something I had never heard of and a diagnosis of which I didn’t quite grasp the severity. Especially when I asked her what it was and her response was, “Google it.”
After a 10-day course of Vancomycin, I was supposedly “all better.” And here’s where the story gets really scary. A week later on a quiet Monday, I worked out, got a mani-pedi, did some grocery shopping, stopped at the dry cleaner, and returned home at 2 pm. I hadn’t had lunch, but no matter, I was suddenly feeling a bit off and the thought of food made my stomach turn. By 5 pm I was asking my husband Eric to pile stacks of down comforters on me because I couldn’t get warm and was shaking uncontrollably. I had severe diarrhea and vomiting, along with the most pain I’ve ever felt, centered in my abdominal area. I couldn’t breathe without moaning, and I was delirious with fever. Eric rushed me to the emergency room where we discovered I had a C. diff relapse and was septic. It still chills me to think about how quickly it happened.
I was admitted to the hospital where I spent a week in isolation. This means I couldn’t leave my room (except for a couple of CT scans), and anyone who entered had to wear a protective gown and rubber gloves. I don’t remember much of that stay. I was on high doses of intravenous Flagyl, Vancomycin liquid form, and Dificid tablets, along with IV fluid, heparin shots in my belly, anti-nausea drugs, pain drugs, and a host of other things I can’t recall. I had three doctors on my team, including an infectious disease doctor, and they couldn’t get my fever down for four days. My white blood cell count, plasma, platelets, blood pressure, and potassium levels were all low and they couldn’t figure out why my body wasn’t getting better. By this point, I was begging for a fecal microbial transplant (FMT), which I had read had an 80% to 90% cure rate. I was told I was not eligible because this was only my first relapse.
When my fever finally broke, the worry on my doctors’ faces finally made it register how serious this was. I could have died. They told me I needed to try to eat, even if it didn’t stay down. I could handle a small bit of gelatin, but that’s it. They also told me that I needed to try to walk in my room for five minutes twice a day. The first time I tried this I failed, my body just wasn’t strong enough. But eventually, I did it—carting my IV along with me as I paced back and forth in my room. It was only 10 steps from wall to wall, so power walking this was not.
When I was released from the hospital, I was weak and pale and my clothes were falling off of me. I still had a week left on Dificid and was simultaneously on a tapered dose of Vancomycin for four weeks. Only I didn’t make it that long.
Two weeks later, I relapsed again. When my infectious disease doctor told me I was finally eligible for an FMT, I wept with gratitude. Like big snotty tears weeping. C. diff is hell and had left me feeling hopeless, but suddenly I had hope again. A week before Thanksgiving I stopped my antibiotics, did a normal colonoscopy prep, and the next day had a fecal transplant via colonoscopy. This was the greatest gift I’ve ever received. Not only did it save my life and cure me (immediately!), but also my gut is now healthier than it has ever been in my adult life.
On New Year’s Eve, I was given an hour-long infusion of Zinplava, a human monoclonal antibody designed to prevent recurrence of C. diff. I was told it would likely only increase my resistance up to 30%, but I’ll take whatever protection I can get so I never again have to go to war with C. diff.
Sepsis and C. diff are tough things to bounce back from, so two months post FMT I’m still working on getting my strength and vitality back to where it was pre-C. diff. I’ve gained some of my weight back, and I’m eating as many prebiotic and probiotic foods as I can to feed the new healthy, good bacteria in my colon because I need those little guys to fight off monsters like C. diff.
The doctor who performed my FMT (a.k.a. My Hero) told me my gut is like a beautiful garden. For it to thrive, I need to tend to it and give it food and water. If I take care of it, it will give back by helping keep me healthy and strong.
I hope through my involvement with the Peggy Lillis Foundation I can help educate people about C. diff, about the dangers of antibiotic overuse, and about how the simple act of washing hands with soap and water can mean the difference between life and death.