Fighting C. Diff...and losing the battle. A Modern Day Horror Story

This article appeared in our local paper.  I've never met Linden Staciokas, though I've read her gardening column for years.

I'm amazed that fecal transplant is the 'last chance' treatment that her doc offers and even more amazed by her reaction.

As soon as I post this, I'm going to send Mrs. Staciokas a link and offer some poo for a fecal transplant.  I just found that uBiome now provides a raw data sample (hat tip, Dr. BG), so maybe her doctor can look at that and decide if I'm a good donor.

Here's a link to Chris Kresser's recent blog on FMTs and "Poop, Cure of the Future."  And an older one from Paul Jaminet. If anybody else has any good links or info, please put them in the comments for Linden to see.

Fecal transplants need to be the FIRST OPTION for C-diff, not a 'hail Mary.'  The doc almost seems defeated saying they have a near 100% success rate...why would they use anything else?

Bacterial infections and fecal transplants — what fresh hell is this?

Posted: Saturday, November 8, 2014 11:45 pm

 

Linden Staciokas / Chronicles of a Diagnosis

 

FAIRBANKS - I am now part of the official CDC statistics, one of the estimated half million Americans yearly who contract Clostridium difficile, commonly called C. diff. What I am trying desperately to avoid is becoming another statistic, namely one of the estimated 28,000 people who yearly die of C. diff. (In fact, the death rate may be considerably higher, since a person may die after, say, heart surgery, but would have survived if C. diff had not taken hold.)

The vast majority of cases are contracted in healthcare settings, usually hospitals but also nursing homes and doctors’ offices. The symptoms include diarrhea, fever, loss of appetite, nausea, chills and belly pain. As I type this, the list of symptoms sounds so benign that I feel like I am failing to portray the agony this bacteria can cause. Think of all of them happening together, each in its most extreme form, and you get some idea of the torture this infection can inflict. Worse yet, I have had five surgeries since February, and contracted C. diff after my second one in April. So, these symptoms were on top of the pain I have battled after each of four surgeries.

A CNN report gave the most succinct explanation of what this infection is and how easily it can be contracted. “C. difficile is a bacterium which forms spores and these spores can persist in the environment, survive on surfaces like hand rails, bathroom fixtures or medical equipment for months, People who are currently or who recently were taking antibiotics are the most vulnerable for getting sick ... because antibiotics not only destroy bad bacteria, but also good bacteria that protect from other infections, opening the door for a C. difficile infection.”

“A patient may go to the doctor with an existing infection like pneumonia and will get a prescription for an antibiotic. That patient is now vulnerable for other C. difficile infections for several months. If this patient finds himself in a hospital and comes in contact with a worker who has not properly washed his hands or touched something with the bacteria on it or treated another patient with an existing C. difficile infection and isn’t wearing gloves, then the now vulnerable patient can be infected.”

Like most people, I am accustomed to thinking of infections as annoying but curable with a round of antibiotics. Alas, that is not the case with C. diff. First, I was put on two courses of Flagyl, an antibiotic whose manufacturer lists it as having these side effects: agitation, back pain, blindness, blurred vision, burning in the hands or feet, changes in speech patterns, confusion, convulsions, decreased vision, depression, dizziness, drowsiness, eye pain, fever, hallucinations, headache, irritability. lack of coordination, nausea, seizures, shakiness and unsteady walk. slurred speech, stiff neck or back, trouble speaking, problems with muscle control or coordination, unusual tiredness or weakness, vomiting, and weakness in the arms, hands, legs, or feet.

When that did not work, I was put on the pill form of Vancomycin, which can cause some of the same symptoms as Flagyl, but has additional and more serious side effects, such as irregular heartbeats. Thirty days of Vancomycin failed to halt the infection or calm the symptoms, so the doctor prescribed Dificid, which, in addition to yet other side-effects, such as sores erupting, had a $3,000 price tag. That is for 20 tablets to be taken over 10 days.

I am already one of the 20 percent of people whose C. diff has not responded to antibiotics, so I asked the doctor what we’d do next if Dificid did not work. He uttered two words I never thought I would hear together, and especially not in relation to my own body: fecal transplant. “We find appropriate donors, dilute their stool into sort of slurry and then give it to you through an enema, a colonoscope or a nasal tube that goes into the stomach.”

“Some people have done their own fecal transplants, using YouTube tutorials, but we don’t recommend that. Let me get you a copy of a recent study that shows how effective this treatment is. Sometimes it takes a second or third administration, but it has pretty much a hundred percent cure rate. While there has been some work done with using a sterilized pill form of donor poop, it is not yet widely in use.”

The door had barely shut behind the doctor when Ted hissed, “Don’t even think of trying to persuade me to participate in a do-it-yourself fecal transplant! That is just the sort of harebrained thing you would attempt.” He was wrong. I am accustomed to handling the poop of various animals and unhesitatingly ask people the most intimate of questions, but it was beyond me to approach anyone for a poop donation and use it in a YouTube recipe.

As I write this, we are awaiting the lab results to see if the latest antibiotics killed off the C. diff. But with the way my luck’s been running since February, I don’t hold out much hope.

(P.S. One final piece of information: those antibacterial foams and hand sanitizers don’t kill C. diff germs.)

Linden Staciokas is a freelance writer, gardener and cook who lives in Fairbanks. She is chronicling her fight with a life-threatening illness in a series of columns and can be reached at dorking@acsalaska.net.