Welcome

http://www.dreamstime.com/royalty-free-stock-images-digestive-system-image9984999

Rarely does medical science come up

with a treatment so effective, inexpensive,

and free of side-effects.

The Observer.

 

Welcome to PoP, a patient information resource dedicated to promoting safe accessible Fecal Microbiota Transplant (FMT) and to raising awareness of the role of the human microbiome in digestive illness.

Who are the writers? Who are Team Pop? Who am I? We are normal people living in all corners of the globe, who have been on a digestive illness journey and discovered that we have a microbiome: a microbial miracle within that left alone will nourish, nurture and protect us – until we mess it up. Digestive illness is then passed down from mother to child and on it goes. Many groups are formed to protect the environment. We’re here to raise awareness of the environment within, to educate you about the role intestinal dysbiosis plays in illness and to answer your questions about FMT, the Ultimate Pro-biotic. We’re here so that one day school children will be taught that they have a microbiome and how to protect it so that they don’t end up as we have, googling the unthinkable, a fecal transplant.

The Power of e-Patients

PoP is built on people power. It’s an resource by e-Patients for e-Patients. Far from being a bunch of hypochondriacs with google-itis we’re a proactive, resourceful lot who do our research and refuse to give up. We respect our doctors but accept that they don’t know everything. The sad reality is that the solutions offered by the mainstream medical profession for digestive illness are not keeping up with the science. There is now sufficient research to show that FMT can repopulate intestinal flora and do no harm. Then why is it so hard to get treatment? Why is it still seen as a last resort? Why are risky anti-biotics, immune-suppressants, anti-inflammatories and anti-depressants seen as better options? Why are colons still being cut out before FMT is tried? It’s time to start asking these questions of our health practitioners and governments.

Our goal is to give you responsible, user-friendly, plain-English access to the information you need to make your digestive health decisions in conjunction with your health practitioners. We appreciate that more research is required and we want it too. We understand that the regulators have a job to do. But we can also see that until there are poop patents approved from which someone can make money, sick people will continue to suffer unnecessarily.

While I welcome the US FDA decision to investigate FMT as a first step on the road to legitimacy, I do not welcome its decision to curtail FMT treatment while it investigates. My concern is that this is driving the practice underground and pushing desperate people to take risks with untested donors.

I urge the FDA and American Gastroenterological Association to develop an interim protocol for donor testing and to encourage doctors to assist patients to screen their donors if requested to do so.

A harm minimisation approach is critical. The evidence to date suggests that properly screened FMT has minimal risk. There is no reason desperately ill people should have to resort to backyard FMT without a medical professional screening their donor.

The Power of Stories

PoP is also about people’s stories. Anecdotal evidence matters. It points researchers in the right direction and reminds the medical profession that we are not just some bunch of statistics on a chart.

Success stories matter. They convey the price of illness, the spirit of human perseverance and the lure of hope that keeps us searching for the holy grail of good health and a normal life. In a recent success story Kathy, the mother of a nine year old girl with ulcerative colitis, tells of persuading her doctors to help with testing for FMT. It was not easy but with research and persistence she won them over. The results were so impressive that her doctor and others started using the procedure. Since then the FDA has stopped FMT for all but life-threatening cases of C Diff. Is this wise? Kathy’s story suggests that it’s a brave FDA that stands between a militant Mom and her child’s colon. Prohibition is not the answer. What’s needed is research and education of both doctors and patients.

Donor stories matter. Stephen is my donor and tells his story to inspire others to get over their embarrassment and help out a friend in need.

Practitioner stories matter. Ed Bondurant tells his UC success story and interviews US-based naturopathic doctor Dr Mark Davis N.D. who in the short time he has been practising FMT has seen impressive results. Unfortunately he has had to cease FMT since the recent FDA ruling but has applied for IND approval to continue. Also interviewed is Dr David Shepard M.D. of RDS Infusions who is reporting success rates of almost 100% for C Diff and 70-80% for Ulcerative Colitis.

The power of One Voice matters. At the US FDA workshop on FMT held in May 2013, only one patient attended and she made all the difference. With the assistance of committed doctors and scientists who attended, Catherine Duff has established the Fecal Transplant Foundation to raise funds for research and raise the profile of FMT within the medical profession. Read the interview with Catherine about the FDA workshop and her new foundation.

The Power of a Plan

Unfortunately many health practitioners are not skilled in offering their patients the reassurance of a plan. While we don’t expect our practitioners to have all the answers, we do expect them to have a plan and involve us in it. So if your practitioners aren’t offering you a satisfactory plan for your recovery, then do as Kathy did and present them with a plan that includes FMT.

We are not suggesting that FMT works in all cases or that other factors won’t have to be treated. But you have everything to gain and nothing to lose by including FMT as part of an integrated digestive recovery plan. So present your case to your practitioner and brave the discussion. You owe it to yourself to try. If they are ignorant and uninformed, go find one that isn’t. Find yourself a practitioner who is interested in partnering you instead of patronising you. You were born to be well, and most of the time your body knows how to recover given the right support.

The Power of an Open Mind

When I was sick and searching for solutions I asked a gastroenterologist about FMT. He screwed his nose up like an eight year old and gasped “but it’s putting someone’s pooooop in you!” An odd comment I thought coming from someone who spends his days with his digits in dark places. His solution was to refer me to a psychologist and sadly many digestive illness patients who don’t fall into the IBD bucket end up this way. Nonetheless I persevered and travelled to another state for my first FMT. Two years later the professional society of which that gastroenterologist is a member approved FMT as therapy. He had not been up to date with developments in his field and I had known more about FMT than he did. Often patients have more incentive to keep up to date with evolving treatments, so we do.

Yet a woman in a UC discussion group claimed ‘I would sooner have my colon cut out than receive a fecal transplant”. Really? Is this the only problem here – the Ick Factor? Germs? Schoolyard prejudice against a smelly brown digestive byproduct?

To overcome these attitude it’s time to get down and dirty and talk openly about poop. Shawn Shaftner, New York Artist and founder of The Poop Project, writes about the cultural and historical antecedents of these attitude in Why We Fear Poop. Christian John Lillis, whose mother died of C Diff, writes on The Ick Factor: Get Over It.

One moment crazy, the next moment ahead of her time…

In the 19th century a French scientist named Louis Pasteur was ridiculed by the medical establishment for his research which showed that bacteria existed, could pass through air, and were responsible for illness. In the 21st century we still believe all bacteria are bad, when in fact good health relies on living in harmony with the great microbiome within. The truth is that we are 10% human, 90% shit. We just don’t like it.

E-Patients like us live in a land of trial and error. The territory we navigate is full of potholes, mud slides, U-turns and detours. There is no GPS. We have often been abandoned by the mainstream medical community. When mainstream treatments fail we have no choice but to undertake our own research and treatments. We are forced to rely on our instincts as if we had been dropped onto a desert island and left to survive. Occasionally we meet others along the journey and may glean ideas, inspiration and comfort. But ultimately it’s a solo journey across uncharted terrain.

We are a small marginalised community and I am proud that there is now one not-for-profit resource for those who are considering trying FMT and don’t know where to start. Having a cyber-presence dedicated to FMT is a small step on the road to legitimacy. It makes our needs visible and gives us a louder voice than the fleeting exchanges in the threads of discussion groups allow. Together we are stronger than alone.

The aim of this website is to become unnecessary, to become redundant. One day there will a universal medical protocol for diagnosis and treatment of intestinal dysbiosis via safe, accessible FMT. One day the link between a dysfunctional microbiome and a surprising range of physical and even mental illnesses will be more than anecdotal. One day it will be mandatory for antibiotics to be accompanied by prophylactic measures to protect the long-suffering human microbiome, and each patient’s flora will be monitored to ensure it recovers. On that day PoP will become a quaint relic of socio-medical history. But until the mainstream medical community start taking these issues seriously, it is left to us to ensure that e-Patients can make an informed choice about FMT.

If you’d like more information on FMT or are having trouble making the decision, see Is FMT for You?, the FAQs, the list of Clinics and the Success Stories of others. If you’d like to chat to others on the FMT journey, come join us. If you’d like to help others by sharing your success story or are interested in writing on any topic that will further public awareness of The Power of Poop, email me. If you’re a prospective donor thinking about helping someone out, read A Donor’s Story. If you’d like to join Team PoP in one of the many roles I have designated to make this site the biggest voice I can for people with damaged microbiomes, read the strategic plan and see if it calls to you.

Whatever you do, I urge you to reflect on your attitude toward fecal matter and open your mind. Interest in FMT is reaching critical mass and the mainstream medical community is going to have to sit up and listen. The Power of Poop is an idea whose time has come.

 

You can resist an invading army; you cannot resist an idea whose time has come.

Victor Hugo

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