My experience with C. diff and FMT - Dina's Story

I have personal, intimate experience with C. difficile and Fecal Microbial Transplantation and feel well qualified to comment on both. I am a 51-year-old housewife who contracted C. diff at a hospital where I had treatment for rectal cancer in 2005. Ever since my initial stay at that hospital for a high fever of unknown origin, just as I began my chemo and radiation began, I had frequent, uncontrollable diarrhea whenever I ate solid food. This diarrhea was initially thought to be possible C. diff, and although I had several false-negative tests for the microbe, it wasn't until a more sensitive toxin-test for C. diff came into use that my unexplained diarrhea gained a positive-test result.  Through the years with undiagnosed C. diff, I was given many drugs to try to control the ever-worsening diarrhea. For 8 years, I was given a diagnosis of "IBS" or "Irritable Bowel Syndrome," which just meant every colonoscopy examination showed normal tissue, yet I had digestive trouble that could not be otherwise diagnosed.

I was confined to my home... Going out was terrifying. Never knowing if or when I might suddenly have to use the toilet became a fear of being stuck in traffic or having to wait in line.

After many years of "living by the toilet," I was diagnosed properly to have Clostridium difficile. By that time I was pooping about 20 times a day, every day. I was confined to my home. I went through about two rolls of toilet paper every day. Going out was terrifying.  Never knowing if or when I might suddenly have to use the toilet became a fear of being stuck in traffic or having to wait in line. After having diarrhea for so many years, your normal bowel function ceases and you cannot wait when you have to "go".

To treat the C. diff, I was given the first line of antibiotic defense: Flagyl. I went from diarrhea 20 times a day to diarrhea 50 times a day. Then I took Vancomycin for 9 months. It helped at first. Each time I stopped it, the diarrhea came back. Then I took the last drug available, Xifaxan, but as soon as I went off it, the diarrhea returned. I kept on taking it, but with each passing week, less it was less effective. 

I had no choice. The treatment I'd wanted to avoid for so long appeared like a Saving Grace, my only hope to recapture life that had long since disappeared. The treatment I had to have, and ultimately did have, was the FMT, or Fecal Microbial Transplant. Once I made the decision to have the procedure, the difficulty in getting the FMT began. I had to provide a stool donor, someone who fit the qualifications bill, who could pass the health-screening test, and someone who was logistically available and emotionally willing to make such a donation.

Then my Infectious Disease doctor told me about a unique group he’d heard of that operates from MIT called OpenBiome.

My initial list had a few close relatives and friends: I was told none of them was suitable. One had recently traveled outside the country; one had become sexually active within the year; one had a sexual partner who had been unfaithful; one had allergies and eczema. Imagine my dismay, after coming so far, to find I might have to query each of my distant relatives or acquaintances just to find somebody to poop on cue for me.

Then my Infectious Disease doctor told me about a unique group he'd heard of that operates from MIT called OpenBiome.  OpenBiome is like a handling agency that procures donors and tests their donations for the exact FMT I was seeking. A few emails and phone calls later, my doctors and I were ready to set up a date for the procedure.

About 6 weeks later, my frozen, no-muss, no-fuss, anonymously-donated stool-microbes, me, my gastroenterologist, and a "clean" room all joined in one colonoscopy procedure. The contents of two tiny little white jars from two people I will never have the chance to meet and thank were splashed in my large intestine.

Since that time, I have improved steadily. It has been almost two months since that procedure. I just drove by car six hours to the next state to tour my teenager's future college. I still watch what goes in and what comes out, but I am off all the powders and antibiotics, all the enzymes, and all the probiotics. I don't have to eat starch all day in the hope of binding my stools. 

My life is beginning again because I had the opportunity to have a Fecal Microbial Transplant from a stranger who came to my aid.

I feel worlds better. I have better control over my stool. I have no diarrhea. That cannot be said enough: I have no more diarrhea. I am still working on getting back 9 years of a lost life. I am 51 today. I was 42 years old when I was first diagnosed with cancer and when the diarrhea began. I have a lot of living yet to do, living of a life that I had thought was nearly over, and is now just beginning again.

My life is beginning again because I had the opportunity to have a Fecal Microbial Transplant from a stranger who came to my aid.

Fecal Microbial Transplantation should be encouraged for Clostridium difficile. There is no better treatment. When a suitable known donor is not readily available, groups like OpenBiome who procure clean, healthy stool for the purpose of combating Clostridium difficile come to the aid of regular people like me.