“We should be guided by what works.” –Barack Obama, The Audacity of Hope
It’s flu season again–our annual lesson in biological humility. A tiny capsule of protein and RNA, 1/20,000,000th our size manages to break through our admirable system of defenses and actually turn them against us, killing a half million people worldwide every year, and leaving more than a billion of us utterly miserable and worthless for 7-10 days. Medically, our best hope to treat the disease is not to get it at all, a strategy which requires a new vaccine every year, some of which work better than others. All of this is compounded by the fact that the majority of the population has somehow convinced itself that the flu is no big deal, certainly not worth taking 15 minutes out of one’s schedule and enduring 1 second of mild pain, to prevent. It’s the perfect recipe for a pandemic, and nearly every year it rises to the occasion.
Today I take a break from transgender education and advocacy to talk about another deadly infection which continues to adapt its defenses, rendering the treatments which, until 15 years ago, worked in the vast majority of cases, substantially less effective. This disease, caused by a bacterium named Clostridium difficile–or “C diff” for short–now infects 500,000 Americans per year, causing approximately 30,000 deaths. In the waning days of November 2017, I very nearly was one of them. This is the story of a deadly disease which already lies quiet in your intestines and challenges the way we think about bacteria in general. And, it’s a story where the best hope of cure lies not in medicine, but in shit.
I recently posted regarding my experience with FFS–facial feminization surgery. I was about 5 days post op at that point, and still really swollen, but optimistic about a rapid recovery. It turned out to be anything but rapid. I developed infections in my cheeks which required multiple courses of antibiotics and surgical revision. Before the dust settled, I had been on antibiotics for nearly 8 weeks.
Four days after taking my last dose of cipro1, the diarrhea started. C diff most commonly strikes after antibiotic use, when the normal bacteria of the intestines are disrupted. I was ready for the possibility of C diff. I had a full bottle of metronidazole–an antibiotic used to suppress C diff2–at the ready. I started taking it immediately, and the diarrhea lessened as long as I took it. No tests were done, but I was pretty sure I had it. I finished my course of metronidazole on Thanksgiving day.
Three days later, my symptoms were back with a vengeance. This time, the diarrhea came with intensely burning rectal cramps and high fever. I was at work at the time, and ended up becoming my own next patient in the ER. Holding off as long as I could stand it, I ended up just flopping onto the cot in Room 4 an hour before my shift ended. My temperature was 105, my white blood cell count was 4x normal and it took three liters of IV saline to get my blood pressure back above 90. I had sepsis and there was some concern that my colon had perforated. This time a stool specimen was collected, and I was started on another antibiotic–vancomycin. I felt better after IV fluids, but I was admitted to the hospital for a couple of days. The test result confirmed that I had C diff.
Vancomycin seemed to resolve the symptoms better. I ended up taking it for ten days–long enough to get some R and R in Hawaii. I felt like a limp dishrag, but it is better to be sick in paradise than sick at home. While there, I saw a T-shirt that I liked, but unfortunately not in my size: Salt Water Cures Everything. Unfortunately this proved not to be the case. Two days after returning home and taking the last of the vancomycin, the diarrhea returned.
I restarted vancomycin again, and this time got permission from my insurance to go on a new medicine tailor made to treat C diff–fidaxomicin. I was on the good stuff this time–$100 per pill of pure healing. I still have half a bottle of it in my purse. I was sick again within five days and switched back to vancomycin, which at least suppressed the symptoms a little better. I resigned myself to the fact that antibiotics were not getting rid of the infection, and there was only one treatment left to try.
About six years previously, I had given a medical lecture for our hospital staff on emerging infections. I covered the latest on Ebola and resistant Staph infections (aka MRSA), but mentioned that an old infection, C diff, was making a resurgence and seemed to be suddenly less susceptible to antibiotics. The change seemed to happen abruptly in 2003-4. The disease had literally evolved in front of our eyes.3 I mentioned a new therapy–stool transplantation from a healthy donor–to the audience, who mostly, like me, laughed it off at the time.
Now I found myself desperate enough to try it. The problem was that it was now Christmas Day and nothing much was likely to happen until after the holidays. My doctor said she would refer me to a gastroenterologist at Mayo Rochester. It would probably take about 3-4 weeks to get an appointment. They did have a stool transplant–aka Fecal Microbiota Transplantation–program. If I were accepted as a patient I should be able to get the procedure done within another 2-3 weeks. She would be happy to supply with more vancomycin in the meantime. Quick math suggested that I was looking at early February, and meanwhile I was still sick, never able to do any better than suppress the symptoms somewhat. Hope delayed is hope denied. I wondered what I should do. More to the point, I wondered what would Angus MacGuyver would do.
I gathered supplies and read up on potential complications. Most hospital based FMT programs require you to supply your own donor, and subject that person to a lot of testing to prevent exposure to other infections. My donor and I have shared a bathroom for nearly 30 years, and I was not concerned in the least about catching anything from her. Hospital programs also typically use a colonoscope to deliver a mixture of stool and water carefully prepared and homogenized in their microbiology lab. I don’t have a colonoscope or a microbiology lab. I decided to settle for an enema bag and some kitchen tools4. There is a surprisingly robust DIY community of fecal transplanters online. I read all that I could from them and from the medical literature about FMT.
One day before the main event, I stopped eating. I laid out everything in the bathroom and even rehearsed the sequence, practicing shifting from position to position in a manner which would allow my mixture to follow gravity back through the length of my colon. I drank magnesium citrate to empty out what was left in my gut and waited for shit to happen. Once it did, the procedure was done in an hour including clean up. I held the mixture internally for 5 hours. That night, everything exploded back out. For good measure, we repeated the transplant the next morning. This time, nothing came back. For days. I have not had a single episode of diarrhea since, nor have I taken a single tablet of vancomycin.
For decades, doctors have prescribed antibiotics for increasingly flimsy reasons to satisfy a patient population that has largely come to expect them. In so doing, we have created a host of emerging diseases which are resistant to treatment. The hope has been that even better antibiotics would come along to treat the tougher diseases. That hope is starting to wear a little thin. In this particular case, antibiotics gave me C diff, or more precisely, they killed off the normal bacteria that usually keep C diff in check. I took more antibiotics to kill the C diff, but they could not eradicate the infection. What finally cured me was not better drugs, but better bacteria, specifically those of my healthy spouse.
C diff may be unique in its ability to be cured by bacteria. I suspect that it is not. Regardless, in the long run, we will need to be more prudent, both as physicians and as patients. Doctors should take the time to explain why antibiotics do not help in viral illnesses (including bronchitis, sinusitis and other upper respiratory infections). Patients should become savvy consumers, not pushing for medication where time and rest will suffice. We hope that diseases will become less resistant to antibiotics if we use them less frequently. Unfortunately, that is only one possible outcome. The other may be the emergence of a deadly post-antibiotic era, where antibiotic treatment is no longer works at all.
My husband has had this – twice – and a good friend has been battling for 5 months althougj seems to be doing better since her stool transplant – very informative Renae and well written – I am passing this on to my friend –
what a great article
disgusting to think about it!!! but still great 😉
(you were always the smartest kid I knew)
Wow you have been through a lot the last few months. Hope you are feeling Better! Always feel like I learn so much from your posts. Sending hugs from Illinois.