Sunday, July 7, 2013

Why I Donated My Stool

This spring I saved a friend from a terrible illness, maybe even death. No, I didn’t donate a kidney or a piece of my lung. I did it with my stool.

About 18 months ago, my friend, whom I’ll call Gene to protect his privacy, fell sick with stomach pain, intestinal cramps and copious bloody diarrhea. He had ulcerative colitis, a colon riddled with bleeding ulcers.

His gastroenterologist started him on steroids and anti-inflammatories — standard treatment for these ulcers. He felt better and within a few weeks was able to taper off the steroids, which can be dangerous if used over the long term. But a month later, the bleeding and diarrhea were back. He was in horrible pain that worsened when he ate or drank. He couldn’t sleep at night.

The doctor put him back on the steroids, but this time the symptoms weren’t held in check. For the next excruciating year, my friend went through episodes where he could do nothing but lie writhing in bed in pain. He lost frightening amounts of weight, became anemic from the blood loss and was forced to take medical leave from a job he loved.

According to his doctors, he was left with two options: powerful immunosuppressant drugs (the kind they give people after organ transplants) or a total colectomy (the removal of the colon). The drugs might not be effective, and they raised the risk of lymphoma or fatal infections, while with the surgical option, the tissue left behind could and often did eventually become ulcerated itself.

That’s when Gene started reading about a procedure called fecal microbiota transplant, or F.M.T.

Transplanting the stool from one person into the digestive tract of another seems, well, repulsive, but it also makes sense. The majority of the matter in stool — roughly 60 percent — is bacteria, dead and alive, but mostly alive. While bacteria can make us sick, they also constitute a large part of who we are; the hundreds of trillions of cells in an individual’s microbiome, as this collective is known, outnumber human cells 10 to 1. The bacteria serve many functions, including in metabolism, hormone regulation and the immune system.

The microbiome of the digestive system is particularly important. At least a thousand strains of bacteria coexist in a healthy human bowel, and beneficial bacteria are involved in vitamin production, digestion and keeping “bad” bacteria in check. Thus, changes to the gut microbiome can precipitate disease. For instance, taking a powerful antibiotic wipes out both good and bad gut flora, which can lead to opportunistic bacteria taking over and causing infection.

Many people who suffer from clostridium difficile, a dangerous strain of bacteria that is becoming epidemic in hospitals and nursing homes, got it this way. The idea behind fecal transfers is that restoring colonies of healthy bacteria can either dilute or crowd out these harmful strains. And it seems to work: in January, The New England Journal of Medicine reported that the first randomized clinical trial of F.M.T.’s for clostridium difficile had been halted because the treatment worked so well that it was unethical to withhold it from the control group.

The causes of ulcerative colitis are more mysterious than those of clostridium difficile (doctors in Gene’s case did not hazard a guess), but there is some speculation that the condition can also be traced to pathogenic bacteria. A small study of children with ulcerative colitis, published this spring in The Journal of Pediatric Gastroenterology and Nutrition, found that 78 percent had a reduction in symptoms within a week of being treated with fecal transfers. (...)

Today, around 3,000 F.M.T.’s have been performed worldwide. No significant adverse reactions have been definitively attributed to the procedure (though there have been two F.M.T.’s that may have led to the transmission of the norovirus stomach bug, both of which cleared on their own within days).

Convinced that the potential benefits outweighed the risks, Gene decided, early this year, to try F.M.T. However, this turned out to be harder than he’d expected. There are only about 16 centers in the country that even offer the treatment. Gene finally secured an appointment with Dr. Lawrence Brandt, one of the most experienced F.M.T. practitioners, only to find out, just before his visit, that Dr. Brandt was suspending his F.M.T. practice for ulcerative colitis on the advice of the hospital’s lawyers, in order to comply with a new Food and Drug Administration decision. In April, the F.D.A. decided to classify human stool that is used therapeutically as a drug, and thus approved for use only within an F.D.A.-approved clinical study.

Gene tried tracking down other doctors, but found to his frustration that almost all of them had stopped doing F.M.T.’s as a result of the agency’s somewhat ambiguous restrictions. He found one remaining gastroenterologist, R. David Shepard, who had an excellent record of treating ulcerative colitis with fecal transfers and was still doing them. But Dr. Shepard was in Florida, and Gene was now too sick to travel.

Dr. Shepard, however, had a solution: he would help Gene with the mechanics of performing a do-it-yourself F.M.T., something he’d done successfully with a handful of other patients. Gene just had to find a donor.

by Marie Myung-Ok Lee , NY Times | Read more:
Image: Katie Scott