Matt’s Story

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My name is Matt Robinson, and I have Ulcerative Colitis. I have had it since 2002, but I haven’t always DEALT with it. By that I mean I haven’t always taken responsibility for my illness and for my healing. After five years of ‘spontaneous remission,’ during which I continued to live as a normal gluttonous, beer swilling American without a care, I flared. It started in 2008, and it was huge. 25 trips to the bathroom every day with blood, mucus, the works. I couldn’t climb a flight of stairs. I was doubled over sweating in pain hourly. I got uncontrollable tremors and fever. I was anemic, dehydrated, and malnourished. My doctors tried prednisone, 5-ASA, immune suppressants, but nothing worked. I remember journaling, “if this is life, I’d rather have death.”

It was just shortly after that journal entry that I found the Specific Carbohydrate Diet (SCD), and began to take responsibility for my health and healing. Until then I had been a passenger in my own car. It took almost a year of unsuccessful treatments for me to get up the guts to climb into the driver’s seat, and pilot my own car. Sure the crew (doctors, family, friends) was still with me, but I was in a new role. Four days after I started the SCD, I noticed a positive change. Since then, I have added other successful natural healing modalities: probiotics, fasting, and FMT.

It’s been a long, hard road—healing is earned, not given—but every step has been worth it. I still struggle with a few symptoms, but today I write to you, three years after starting natural healing methods, at almost 100% healed. Down from 25 BM/day to 1-2 BM/day with no blood or mucus, and with normal blood work, and mild, mild inflammation in my biopsies; if I can do it, so can you.  

If you glean nothing else from this guest post, that’s what I’d like you to take with you—hope. Using natural methods to heal from gut disease is difficult. Often it can feel like two steps forward and one step back, but even then, you’re one step closer to your goal of healing. It is possible. There are no guarantees, sure, but for me and thousands of others around the globe, the journey has been worth the struggle…

But I’m here to talk about Fecal Microbiota Transplantation (FMT), also known as Fecal Transplant Therapy (FTT) and Bacteriotherapy, for all those key word geeks out there Googling. It is one of the most exciting natural treatments for gut disease going today.

I first got interested in Bacteriotherapy (a.k.a., FMT) while I was reading a series of posts from Perfect Health Diet on bowel disease. I highly recommend their series on bowel disease. I followed the references in their posts, and began reading research from Dr. Thomas Borody of the Centre for Digestive Diseases in Sydney, Australia. Much of the research I read was only pilot studies (<50 people) on people with Colitis, but the remission rates were high (50% or better; today the center reports much higher rates), and most of those stayed in remission through the entire follow-up period (up to 13 years!). Naturally, I had to check it out. I began calling experts on human digestive flora, here in the US. A plan began to form.

The protocol calls for a completely ‘clean’ digestive system. Kill everything, good, bad, or otherwise. No matter what you read, we still don’t know, in vivo, which bugs are universally good (save maybe a few dozen out of hundreds of species normal to the human gut), and what they do in people with the genetic predisposition to IBD. We are just now beginning to explore the human microbiome. So probiotics, homeostatic soil organisms, and yes, even fecal transplants from healthy humans come with some uncertainty. For me though, the concept made sense, and was less risky than all of the drugs I had tried for UC. In the end, the high success rates enticed me. It really was as simple as that. I thought, “What do I have to lose?”

So I set about finding a donor, and preparing my doctor. (I’ve written about both of these on my blog here, or you can find more information on donor criteria and talking with your doctor in my FMT guide, The FMT Coach.) Finding a suitable donor was more difficult than I thought it was going to be. My wife was not a candidate because she has psoriasis (which has a gut dysbiosis link), and we live far away from any family. So I was stuck explaining to a friend that his poop, if he donated it for me, may very well save my life. Try explaining that to a healthy person. It did deepen our friendship, though. I likened it to a bone marrow or kidney transplant, except much easier.

I didn’t find much resistance from my donor (a good friend) beyond the initial ‘that’s gross.’ However, I know that many people deal with fear in asking someone to donate, and in approaching their doctors. For that, I wish I had silver bullet advice for you. Courage is your best friend here. Bowel disease, because it involves potty-talk and because it involves things we were taught were private, hides in the shadows of society. Don’t be embarrassed to ask for what you need. And if poop from a healthy person will help heal you, well then that’s what you need. I asked several people, so that I would have back-up donors if one got sick. The first guy I asked stopped me in the middle of apologizing profusely for the grossness of our conversation, and said, “I don’t think it’s gross. If something that simple can save you from colitis, it’s the least I can do. I feel honored you’d even ask me.” I was taken aback. I had never thought of it from his point of view. If I were in his shoes, how would I feel? I’d do it without hesitation, gladly, and I would feel honored. Think about it from your donor’s point of view.

The same can go for talking with your doctor. Think about it from his/her point of view. What persuades your doctor? What risks is he/she willing to take, and what risks does this pose for them? Why would they take those risks for you? Put yourself in your doctor’s shoes, and your better than half way to gaining their confidence and their help—even in such a non-conventional treatment.

Let me caution you, though. FMT is not a silver bullet. It has taken a long time for lots of you to get sick, and it will take time for you to heal. It may work overnight for C. diff., but it doesn’t work overnight for IBS and IBD. It takes time and patience. I was well on my way to healing (down to 3-4 BM/day, loose) when I started FMT, and my symptoms were gone after the 3rd or 4th infusion, but then life happened and my children gave me and my wife a stomach virus which ruined the treatment. Even so, I exited that FMT time better (1-2 semi-formed BM/day) than I started, and I have plans for doing another round soon (without a stomach virus!).

The best advice I can give someone who is thinking of FMT, is to do it. It is work. It is unpleasant. It may take 10, it may take 30, or it may take 100+ infusions (if you’re a hard case) for you to get better. Certainly the treatment works better in concert with a therapeutic diet, and other effective modalities that together form your healing environment. But FMT is the real deal, and it has helped lots of people.

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Categories: fecal microbiota transplant, FMT success stories

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2 replies »

  1. Great post. FMT is slowly making gains in medicine for tx for recurrent C. diff, but there’s yet to be much of a push for other conditions, though what I’ve seen has suggests (and the theory holds up) that it is useful for inflammatory and immune related conditions. Hopefully with time it will become more accepted. I’ve written about it a bit, and I recently met a GI doc at my hospital that would like to get a FMT protocol off the ground at our hospital (but only for recurrent C. diff).

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