I Got An Experimental Fecal Transplant. It Changed My Life.
by Anna Zigmond
“I think I’m dying.”
These are the words I sobbed to my mom on the phone as I sat on the toilet with stomach cramps so debilitating, I could barely move. A pure black liquid was coming out of me and wouldn’t stop. Just when I thought there wasn’t anything left inside my body, there was more.
At this moment, I was unknowingly in the depths of a horrible Clostridium Difficile infection, better known as C. diff. This was the beginning of a seven month health battle, which ultimately led to one final life-saving option: a Fecal Microbiota Transplant.
Two months prior to my diagnosis, I had caught salmonella. The doctor prescribed me antibiotics, but I still had frequent stomach cramps, felt extremely fatigued, and most of all, my stool was unrecognizable. My doctors assured me that this was normal, and that the healing process would take some time after an aggressive infection like salmonella. Despite my discomfort, I didn’t want to seem weak. Like I was complaining. Or ungrateful. So I did what every woman does; I sucked it up, and tried to be patient with my body’s healing process.
But things got worse.
The stomach cramping began to intensify. I’d go to the bathroom eight times a day. I couldn’t focus on much and when I could, it was physically and mentally exhausting to distract myself from the pain. Something definitely felt wrong, but wasn’t this just all part of the healing process?
“every health condition i’d ever had in my life came flooding back.”
Then came the night of black liquid and calling my mom and crying. I realized I wasn’t healing, but deteriorating. So I went to the hospital, where I was diagnosed with C. diff. Every health condition I’d ever had in my life came flooding back; to this day, I can’t even count the rounds of antibiotics I took throughout my childhood for various ailments. Unknowingly, my gut was paying the price.
According to Harvard Medical School, about 1-3% of healthy adults carry an inactive form of C. diff in their colon, along with normal intestinal bacteria. When you take antibiotics to kill infection-causing bad bacteria, these aggressive antibiotics can cause collateral damage and destroy good bacteria at the same time. All of those rounds of antibiotics over my life created the perfect storm of conditions for a C. diff infection, and the medication for salmonella just sealed the deal.
After my C. diff diagnosis and initial round of medication, my symptoms were at their absolute worst: fever, acute diarrhea, dehydration, and lower abdominal cramping. I became jaundiced and now went to the bathroom anywhere from 12-15 times a day. There were times when I’d sit on the toilet with diarrhea while simultaneously puking into a trash can. After a few days, my doctor tried a different treatment and finally, my C. diff was gone. Finally.
“three months later, the C. diff came back.”
But. Three months later, the C. diff came back. Worse than ever.
34 days of treatment and no signs of healing. My body was clearly OVER IT, and so was I. Bouts of physical pain were only made worse by consecutive days of isolation in bed or curled up on the bathroom floor. I was incredibly lonely. Every day, I’d hope for the best, thinking this was the day I would start getting better, but I just kept losing weight and became increasingly sicker. I was defeated. I’ll never forget the look on my gastroenterologist’s face when he saw me; he was shocked and genuinely scared at my appearance, which was gaunt and haggard.
But then, finally, there was a glimmer of hope.
My gastroenterologist suggested performing a fecal microbiota transplant (FMT) to help restore balance to my gut. He explained how he’d be sourcing fecal matter from a donor, one with healthy and diverse gut bacteria, and then inserting it into my colon (which is typically done via enema, colonoscopy, or feeding tube) to repopulate my compromised microbiome.
“I highly suggest we proceed with this if you are comfortable,” he said. He was clearly trying not to pressure me, but his urgent tone suggested that this procedure was likely my only viable option to get better. It took me all of 20 seconds to say yes. I was ready.
Of course, we went through all potential outcomes of FMT, but a lot of them were inconclusive. Fecal transplants are not yet FDA approved; they’re still considered “experimental,” with limited long-term research. So far, research into the human microbiome has shown huge promise, with scientists and doctors linking our gut health to everything from our intestinal health to our mood and cognition (called the “gut-brain axis”), and a compromised microbiome can potentially explain the development of certain diseases, like diabetes and autism. And currently, the medical community is studying FMT as a possible microbiome-balancing treatment for diseases like Crohn's, IBS, metabolic disorders, and Alzheimer’s; the research on FMT is exciting and truly cutting edge. So far, FMT’s success rate in treating C. diff is over 90%, which is especially huge when compared to the 34% success rate of antibiotics. Some fecal transplant trials have even seen potential in helping reduce the symptoms of autism in children. Which would be an amazing development.
“but still, the safety and side effects of FMT are pretty murky.”
But still, the safety and side effects of FMT are pretty murky. Since FMT is still an emerging treatment that has yet to win FDA approval, the data on FMT isn’t fully comprehensive or accessible to the public. I mean, we really don’t even know the exact number of people who have received fecal transplants in the US. And we definitely don’t know how many people are performing “DIY” fecal transplants, which, yepp, is a thing.
And so we’re still learning, no pun intended, that fecal transplants can lead to some weird shit. One woman, despite maintaining a strict diet and exercise regimen, reported gaining 41 pounds after receiving a fecal transplant from an overweight donor (at least her C. diff infection was cured). A few long-sufferers of alopecia reported regaining their hair growth post-FMT. And in the absolute worst case scenario, some patients have fallen seriously ill (or even died) after receiving fecal transplants from donors with antibiotic-resistant strains of e. coli or other viruses, which has lead to more stringent and thorough screenings of donor samples.
“we’re still learning, no pun intended, that fecal transplants can lead to some weird shit.”
“We’ve seen some patients develop similar eating habits to their donor,” my doctor personally warned me. Of course, I took all of the potential side effects seriously. But truthfully, I didn’t care if the donor only ate sardine and mayonnaise sandwiches; I was desperate. With my eagerness to feel like a functioning human again, confidence in my doctor’s experience, and FMT’s high success rate in mind, we moved forward with the procedure.
As they prepped me before the transplant, I remember feeling elated (which, honestly, could’ve been the drugs). My mom and I cheered as they rolled me out— I couldn’t wait. But once I was in the operating room, surrounded by my doctor and his support team, terror and doubt crept in. I worried that this wouldn’t work. I worried I was out of options. I worried about this foreign poop sample about to be implanted in my body— what if it wasn’t perfect? I worried, that after everything I’ve been through, I could leave with a fresh set of newer, more terrible health conditions that take even longer to treat. Before I could spiral any further, the sedative kicked in.
“it was the first healthy poop i had seen in almost 11 months. i screamed.”
I came out of the procedure groggy and anxious. For two days, I experienced normal side effects like bloating and cramping, but on the third day, I pooped. An actual solid-ish poop! The first healthy poop I had seen in almost 11 months. I screamed. I actually screamed. I never knew I could love poop this much. I wanted to hug my donor.
In the weeks afterwards, I felt like a new person; you know, a normal one without C. diff. But despite my newfound health, I was still mentally healing, too. With chronic illness comes isolation, depression, general physical fatigue and pain, maintenance and management of medication and diet. There was also frustration from not having answers, feeling constantly restricted, and my impatience to heal faster. It wasn’t easy. It became very clear I couldn’t just continue where I had left off pre- C. diff.
And physically? I felt better, but I could tell my body was changing. A few months post-procedure, I started struggling with IBS, new bursts of stomach cramps, and food sensitivities. For the first time in my life, I suddenly developed skin issues, like cystic acne.
And I had to frequently remind myself and my doctors that antibiotics were now strictly off-limits for me, which was terrifying. After a fecal transplant, especially one for severe C. diff, there is a high risk of relapsing if you’re exposed to antibiotics. Think of all the life-threatening illnesses treated by antibiotics. What if I got one of those? The fear of getting sick became consuming. I constantly catastrophized worst-case scenarios for infections I didn’t even have, and the thought of getting C. diff again would send me into a panic. Moreover, the no-antibiotics rule applied beyond medical treatment. Antibiotic-free became a new part of my restaurant and grocery vocabulary. My diet had to change, practically removing all meat and other foods that could potentially put me at risk.
“FTM has done wonders for me, but my whole life has changed.”
The fecal transplant has done wonders for me, but my whole life has had to change because of it.
Even three years after my transplant, I’m still healing, adjusting, and learning about my body, especially my gut. I’m still dealing with the fear of getting sick, but it’s gotten better. I’ve made permanent lifestyle changes that haven’t been easy. There has been no quick-fix. I’m now in this for the long-haul. But surprisingly, that notion now feels empowering. As much as I feel a huge responsibility to my body, after all it’s been through, to avoid putting it at risk again, I’ve realized I have more control over my health than I thought. I’ve learned how to advocate for myself, even when it was hard. I’ve learned to speak up when I feel uncomfortable with a treatment plan or medication.
And now I actually feel hopeful. And excited. Because I’m in control of how I care for myself. Because science and medicine are innovating and adapting everyday. And because I now know how to listen to my gut.
