This is probably the weirdest thing I have ever done.
Photo: Illustration: Zoë Colling
As I climb onto the hospital bed, the reality of what I was about to do hits me, and I suddenly feel like I’m going to pass out. The doctor asks if I’m OK.
“Yep, fine,” I squeak.
I am absolutely not fine. But I’m damned if I’m going to back out now.
***
When the idea of a faecal transplant was first raised by my doctor, I had the reaction I assume most people would have: a resounding “hell no.”
It’s kind of funny how long-term intractable illness will make you reassess what you’re willing to do for a chance at improving your health, no matter how small that chance might be, and no matter how unpleasant the prospect.
I’ve had Ankylosing Spondylitis – a form of autoimmune arthritis – for close to six years. For me, it means near-constant pain, mostly in my spine, as well as inflammation in my joints, and fatigue that makes it difficult to live a normal life. Most of the time, I can’t drive. I can’t walk long distances, I can’t sit for very long, if I oversleep I wake up in agony - something particular to AS. Two hours of work exhausts me. It’s a life between a rock and a hard place.
Put it all together and it’s not much of a surprise I’m open to thinking outside the box.
Faecal Microbiota Transplants, or FMTs, are exactly what they sound like. “Healthy” faecal matter is taken from a donor and placed into the recipient’s colon. The minute the procedure is complete, the good bacteria from the donor start to multiply. Ideally, they will recreate the healthy environment they came from in their new home.
FMTs are being used in hospitals around the world, most commonly to treat pseudomembranous colitis, which is caused by the bacteria Clostridium difficile. These bacteria thrive when there are less of the normal healthy bacteria, most commonly after someone has taken antibiotics.
As well as being proven for the treatment of C. diff, FMTs have beneficial effect in most patients with inflammatory bowel disease or irritable bowel syndrome. New research suggests they could have positive impact on a wide range of autoimmune disorders, metabolic disease, and even neuropsychological conditions. Animal studies have shown links between the presence of certain species of bacteria in the gut, and the development or management of mood disorders.
I had C. diff in 2013. Because I was already having antibiotics for a stomach infection, it took a little while to realise that not only was I not getting better – I was getting much worse. By the time I was diagnosed, I had developed Toxic Megacolon (which sounds like a cool Transformer but really isn’t). I ended up in hospital, hooked up to a bunch of scary looking machines. Later, I found out that Toxic Megacolon, where your large intestine widens and in some cases perforates, is rare and sometimes fatal. It turns out a healthy gut is pretty important to survival.
My stomach has never recovered. And, because I have a unique gene called HLA-B27, the inflammation triggered the development of my arthritis.
***
It’s becoming very obvious that our microbiome – the microorganisms in the gut – plays a vital role in our overall health.
According to traditional estimates, humans are colonised by trillions of microorganisms – we’re living with about ten times as many non-human cells as human ones. Many of these happily co-exist. Most of them we don’t yet understand. “Microbiome” refers specifically to the collective genetic material of our resident microorganisms.
READ MORE: Manipulating the microbiome for health.
According to medical microbiologist Dr Richard Doehring, we are increasingly figuring out that humans are not isolated organisms: “We are composite beings. There’s never been a time when we’ve not lived in association with other organisms,” he says.
“However, in the last two hundred years, out of the several hundred million years of vertebrate evolution, that association has been heavily impacted by industrialisation and urbanisation.
“Our ancestors had far more contact with plants, soil, animals and animal excrement. Their diets were diverse and contained more fibre and more raw and fermented foods.”
Doehring says that one of the most radical changes in modern life has been our “irrational fear of microbes.”
“Out of the germ theory of disease has grown a phobia of all bacteria, with widespread and inappropriate use of antibacterial products and antibiotics. This has affected the richness and diversity of the bacteria within and on our bodies. We now have fewer than half the species our forebears had.”
He says that although the ability to sequence the genes of gut microbes is only a few years old, there are now huge quantities of data available.
“We’re only beginning to unravel what they mean in terms of how particular patterns of microbial populations affect health or disease.”
***
At the end of last year, I took part in the American Gut Project. New Zealander Rob Knight, a principal investigator in the Knight Lab at the University of California, co-founded the project, which aims to map the microbiomes of people around the world.
The databank is open source and is a foundation for understanding our microbial inhabitants and their impact on our health. It’s the largest crowd-funded “citizen science” project in existence, with more than 10,000 participants as of 2017.
It’s kind of like a bizarre scientific Givealittle, where the little you give just happens to be a fecal sample, along with a donation towards the project. In return, you get that feel-good zing of contributing to the greater good, as well as a picture of your personal bacteria. It’s like shining a light into a doll’s house to see who’s living there.
My results were unsurprising. The bacteria we need a lot of, I have very few, and vice versa. It’s like my doll’s house is filled with tenants who like to play Limp Bizkit and drink til four in the morning.
I was referred to a specialist doctor who performs FMTs both within and outside of the public health system. He ensured I’d tried other treatments first and advised me to keep my expectations reasonable. I listened, but nothing changed my mind. I had already decided that I was all in.
***
When I arrive for the first appointment, my doctor talks me through the process and the pains taken to keep it safe and hygienic. Each donor has a raft of tests to confirm that their gut is in optimal health and carries no diseases or infections that could harm someone else. For some patients, a family member acts as a donor, and the sample is processed immediately. For others, like me, I don't know who it has come from and it’s stored in a freezer until use.
Considering there’s ‘How Tos’ all over the internet for performing transplants on oneself - and many stories of success - all this isn’t as radical as it might seem. At least I’m doing it in controlled circumstances. My hand is steady when I sign the consent form.
Thankfully, the procedure is quick and painless, albeit uncomfortable.
The room is beige and sterile, as uniform as any hospital. The doctor has wheeled in the FMT in a shiny grey suitcase, and I can’t stop thinking what a hilarious image that is. I’ve got the nervous giggles. They stop when I get on the bed, which is extremely hard and acts like a sharp reality check.
The fecal matter is delivered via enema, which takes literally two minutes, and then I have to stay laying on the painful bed, (which is clearly not designed for arthritic spines,) so gravity can do its thing. I take deep breaths and try not to think about what’s happening inside my body - “A war,” as Dr Doehring described it. “A war, between the current inhabitants and the new.”
“I feel weird,” I write when I get home. “This is probably the weirdest thing I have ever done.”
I am less nervous for the second procedure. I lie on the bed while time ticks by, messaging my friend who is in the waiting room and answering emails. When I come out, the friend asks if I’m going to be OK or if I “need a butt plug.” I snort out loud, then yelp; “Oh my god, please don’t make me laugh!”
I don’t experience an immediate miracle, but I discover that I can eat a bunch of foods I couldn’t before. This is important, because the more diverse my diet, the better I can rebuild my own biome. Before, the long list of Do Not Eats included anything in the nightshade family (tomatoes, potatoes, peppers), anything with a lot of fibre (garlic, onions, lots of vegetables like peas, carrot, legumes like beans and chickpeas), quite a few things containing gluten or dairy. Now, I’m able to eat garlic bread for the first time in four years and that alone is almost worth the whole shebang.
***
In the lead up to my fourth transplant, I ask my doctor if I can interview him. He’s reluctant, not wanting to draw too much attention to FMTs until they’re being done in safe and acceptable ways in more places around New Zealand.
I see his point. But after five years of having to learn, often by accident or word-of-mouth, about different treatments, I think patients deserve to know every possible option, even the ones that are new and not widely available. And if more people start asking about FMTs, maybe hospitals will respond and get equipped to provide them for a wider range of diseases.
My fourth appointment is a weird mix of procedure and interview. Used to the routine now, I open my notebook and pepper him with questions while I climb onto the bed. How many procedures has he done? How many other patients does he have? Have their transplants been successful?
One patient felt they improved 100 per cent. Some others said 50 per cent. Still others haven’t noticed much change. He promises to ask if any of them are willing to talk.
Later that night, I get a message. “Try Richard Griffiths,” it says. “He’s an interesting case.”
I give Richard a ring. He’s a mechanical engineer who was diagnosed with ulcerative colitis at 23. He kept his illness under control for years – until, like me, he was treated with a lot of antibiotics in short succession.
“I got psoriasis – a skin condition – on my hands,” he tells me. “I work with my hands, so they’re pretty important. The skin was all flaking off. I saw a specialist who gave me antibiotics. I went back in two weeks and they hadn’t worked, so he gave me a different sort.”
Richard’s health started to decline. He tried all sorts of treatments, was in and out of hospital and lost a dangerous amount of weight. The outlook was bleak.
“They said to me; ‘We’re gonna cut your bowel out now,’ and I said; ‘You’re joking.”
Desperate not to have the surgery, Richard went looking for other options. He’d heard about faecal transplants on TV, and thought “What have I got to lose?”
For Richard, the first transplant was miraculous.
“It pretty much cured me. I’d been bleeding for a year at that point. I stopped bleeding. It had a huge effect within a day.”
Unfortunately, no subsequent transplant worked as well as the first. Richard thinks that it’s possibly because he’d already received the good organisms that donor had to offer. Eventually, he had to have the surgery, removing two kilograms of his bowel. He’s since been well.
***
My doctor reminds me it’s early days for the treatment.
“I think we’ll get better at it in the future. Who knows what diseases might be helped – perhaps obesity? Depression? High blood pressure? Antibiotic-resistant superbugs?”
In the meantime, I’m sending another sample off to America to get a new bacterial map. I’ve had four transplants from two donors. While I might not look it on the outside, my microbial terrain could be completely different. It’s a new frontier.
Who knows who’s living in the doll’s house?