NYTimes: Opinionator

JULY 6, 2013, 2:54 PM

Why I Donated My Stool

By MARIE MYUNG-OK LEE

This spring I saved a friend from a terrible illness, maybe even death. No, I didnÕt donate a kidney or a piece of my lung. I did it with my stool.

About 18 months ago, my friend, whom IÕll 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 couldnÕt sleep at night.

The doctor put him back on the steroids, but this time the symptoms werenÕt 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.

ThatÕs 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 individualÕs 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 ÒbadÓ 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.Õs 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 GeneÕs 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.

The idea of using stool as medicine is not new. In the 16th century, during the Ming dynasty, fermented fecal concoctions, euphemistically named Òyellow soup,Ó were used for digestive problems. In the 17th century, Christian Franz Paullini, a German physician, compiled a stool recipe book for treating dysentery and other digestive ailments. In the United States, fecal transplants have long been used on sick horses, and in 1958, Dr. Ben Eiseman pioneered the concept in humans, writing about the use of a fecal enema as a last-ditch effort for a patient with clostridium difficile.

Today, around 3,000 F.M.T.Õs have been performed worldwide. No significant adverse reactions have been definitively attributed to the procedure (though there have been two F.M.T.Õs 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 heÕd 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 hospitalÕs 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.Õs as a result of the agencyÕs 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 heÕd done successfully with a handful of other patients. Gene just had to find a donor.

The donor question was a tricky one. The donor has to be healthy (and will be screened, via stool and blood, for transmissible diseases like H.I.V., as well as for pathogens and parasites); has to avoid any foods the patient might be allergic to; and has to be nearby, as freshness is an issue: the bacteria mix may begin to change once the stool leaves the body.

THIS is where I enter the story. My friends know me as being somewhat evangelical about eating fresh fruits and vegetables. I also eat a lot of naturally fermented vegetables, which contain beneficial bacteria as well as the kind of fiber that nourishes good bacteria in the gut, and I follow a gluten-free diet (Gene had found that his colitis did better off gluten). Finally, IÕm regular, which is also important. In the end, it was kind of inevitable that he ask me.

After the initial weirdness of the request wore off, I told him IÕd be happy to do it.

The screening took one visit to the lab. The procedure is, of course, messy and odoriferous, but itÕs also simplicity itself. GeneÕs marching orders were to procure a dedicated blender and sieve, enema tubing and syringe, and lots and lots of newspaper. F.M.T. basically consists of blending stool with saline, straining it, and reintroducing it into the colon via enema.

I delivered my first donation, in Tupperware, and Gene took it into the privacy of his bathroom. I stayed, just in case I was needed, and after about half an hour, he came out and told me, with a look of wonder, that he was feeling better already. Already? We checked with Dr. Shepard, who told us that, indeed, one can feel the effects that quickly.

However, a few hours later, the cramps returned. The good bacteria appeared to be doing something, but hadnÕt gained a foothold in GeneÕs gut. We would need to keep doing the transfers — first twice a day, then just once a day.

By early May, Gene felt well enough to get on a plane to Dr. ShepardÕs center in Florida, where he received a colonoscopic F.M.T. The doctor confirmed that instead of the multiple ulcers Gene once had, thereÕs only a single small one remaining.

He canÕt declare his ulcerative colitis Òcured,Ó because it could still return. However, for now, the diarrhea, bleeding and mental misery are in the past.

Of course, his experience is only one story, hardly a double-blind clinical trial. And there could be risks we donÕt know about: could moving the genetic material of one person to another also transfer unwanted characteristics, like a propensity toward diabetes or cancer? More studies are needed. But at the same time, the F.D.A. needs to fast-track research into this field, though it is neither glamorous nor capable of promising a blockbuster drug payoff for some corporation.

Thankfully, just two weeks ago, the agency announced that it was easing some of the restrictions it imposed in April on the use of F.M.T. for clostridium difficile. But this does not apply to ulcerative colitis. Gene had been lucky to have received one of Dr. ShepardÕs last F.M.T.Õs.

Gene was also lucky (or desperate enough) to find a donor. Some patients have resorted to Craigslist. There is the possibility of creating synthetic stool, but given that there are thousands of unknown species of bacteria in human stool, thereÕs no way to know if it would be effective. In an ideal future, a universal screening panel will be put in place so that healthy people can donate their microbiota, the way you can with blood.

The upside for patients would be huge. In a maelstrom of skyrocketing health care costs, think of what we could save, in terms of quality of life and money, with this procedure. Clostridium difficile infections alone kill about 30,000 a year and cost billions of dollars. The prescription drugs for GeneÕs ulcerative colitis, let alone the doctor visits and one hospitalization, ran into the tens of thousands of dollars. The F.M.T. was basically the cost of the blender and the enema materials.

Gene gained back much of the weight heÕd lost and recently returned to work. He was feeling so good that, last month, he gave a party. HeÕd kept his illness very private and thus most people hadnÕt seen him at his sickest — to them he probably just looked like himself. But I remembered how skeletal and hollow-eyed he looked and the incredible journey he took just to fight his way back to normal. Now, thanks to some doctors who are promoting the curative powers of what we once used to think of as Òwaste,Ó Gene has a new medicine, one thatÕs replenishable and has no co-pay.

As for me, in a normal world, I would prefer not to discuss my stool in a public forum. But seeing my friend restored to health has made me change my attitude. Every morning (like I said, I am very regular), I find myself with a new appreciation for this bacterial world that we share.

Marie Myung-Ok Lee teaches writing at Columbia and is working on a novel about health care.