Michael K Hurst – Cured of Ulcerative Colitis from Fecal Transplants summer 2011. For additional details about Michael’s story or to contact him see his website FecalTransplant.org
What % better are you?
I am 110% better, I’m actually better now than I ever was at any point in my whole life. For the first time in my life I regularly have solid stool! I consider myself cured since I have maintained remission for 16 months with no maintenance medications or special diets while still having my colon intact. I use this term of being cured since there currently is not a medical definition for no signs of the illness for an extended period of time without maintenance medications, so Dr. Borody suggested a scenario like mine could be considered a cure and having that as a goal was a big part of my motivation.
Brief summary of your condition and treatments you tried pre FMT.
I was diagnosed with Ulcerative Colitis just before my 21st birthday in June 1999. The flare started while traveling with my family in South Africa with irritation in my eyes and then bloody diarrhea. No one else in my family became ill and a stool test did not reveal any known pathogens. After Asacol and 60 mg of Prednisone failed to bring my flare under control, the addition of Cipro helped bring it into remission.
Over the years I tried almost everything including Asacol, mesalamine suppositories, Prednisone, 6mp, Remicade, diets, pro-biotics including VSL#3, fish oil, Butyrate Enemas, Flagyl. I was scheduled to have surgery when I found out about FMT or Fecal Transplants when I first heard about it from an article in Slate.com
When did you have your first / last FMT.
I started in the 2nd week of June 2011 and stopped in the 3rd week of July, about 5 weeks of daily enemas.
How many FMTs did you need?
I did one every day for 5 weeks, however in retrospect I don’t think that was necessary. I think if you can slow the diarrhea and calm the muscle spasms that will increase the effectiveness of the transplanted bacteria so it can work much faster. However even after the new bacteria is established there is going to be continued time to heal with some ups and downs. For me a big breakthrough was about 6 – 7 weeks after I had started doing them.
Were there other perpetuating factors in your illness?
Yes, it turns out the reason I was not healing between flares toward the end was low albumin levels in my blood. Not enough protein to heal damaged tissue. I attribute this to special diets and also the duration of extensive ulceration in my colon. I also realized that emotional stress / depression played a strong role too. It wasn’t until later while doing the fecal transplants I realise how much impact that had for my case.
How and when you first heard of FMT?
A Slate.com article called “The Enema of my Enemy is my friend” about FMT for Clostridium Difficile–related Colitis. Then 3 days before my surgery date I read about it being used for Ulcerative Colitis on Wikipedia which referred to “Treatment of Ulcerative Colitis using Fecal Bacteriotherapy” by Dr. Borody. Those results compelled me to cancel surgery to explore this option.
The factors you took into account when deciding to ‘take the plunge’
Borody’s article which documented 6 patients who were essentially “cured” blew my mind and convinced me. I really had nothing to lose at that point, other than my colon and what I saw as a significant impact on my quality of life. I then researched possible risks and realized that by taking basic precautions the worst that would probably happen to me was to be right back where I already was, facing surgery. From the moment I read that article, I was confident it could work for me, after talking to Sky Curtis and hearing her story, I was even more certain and also realized that I could do this myself.
The criteria you used in choosing a donor and the testing that you had done.
After talking to a mentor who had done this, I decided to take her advice and plan to do the fecal enemas over a long period of time. Actually I was ready to go indefinitely if that is what it took. I decided to go with someone outside my immediate family because there was a family history of IBS and I also wanted to continue living in the Washington, DC area. I asked a good friend of mine who had been one of my best clients in my dating coach business. I knew he was open-minded and healthy so I thought I’d give it a shot.
How you approached your donor and his response.
My donor had just come back from a week-long spring break trip since he was a teacher so I asked to go hiking near Great Falls. He was aware of my illness, especially since one time I actually pooped my pants while out coaching clients at a swanky bar! I told him about how I had found out about FMT and why it would work.
After cracking some poop jokes, I asked if he would be willing to be my donor. He agreed and also agreed to get an apartment together as roommates. I assured him that he would not incur any out-of-pocket expenses nor have to undergo any invasive procedures.
He responded “So you just need my (poop)? I really wasn’t going to do anything with it anyway, so sure thing if you think this can make you healthy.” I had him complete the questionnaire and then we got an apartment and went from there.
The result and the aftermath – what was your FMT experience like?
There were many funny stories like the first time I tried to mix poop in a blender I didn’t put the blender together properly and that (stuff) went everywhere. Fortunately I had lost my sense of smell over the years. Sometimes when my donor and I weren’t at home at the same time, he put some poop in a Glad Ware container in the fridge. If other people were around, he would say he had a “gift” for me. While some people like to keep things like this private, I enjoyed the reaction from telling people sometimes. While I go into more detail in my book, here is a brief summary.
The enemas themselves went pretty well, especially if I took Immodium an hour beforehand. I would lie on my side and read or even drift off to sleep if I did them at night. I was off Prednisone at the time and my symptoms started improving rapidly. But then I stopped taking Apriso and a flare developed. After trying to avoid going back on Prednisone I finally went back on it. My sense of smell returned – whew it does stink – better rub some Vicks under your nose. My mentor encouraged me to keep going; she said it gets better again. I was feeling discouraged about the flare and stopped the enemas after going to my GI doctor to get more Prednisone; however I planned on going back to doing the enemas after a week or two.
I also began to search for more options. I made an appointment with a psychiatrist I had seen on and off over the years for ADHD and started taking Bupropion and Silenor. The next day I had mostly solid poop! The diarrhea completely stopped. This was about 6 weeks after I had started them and about a week to ten days after I had stopped doing them. By the end of 10 days I had completely tapered off Prednisone from 40 mg a day. About 8 weeks later, 14 weeks after starting FMT I had a colonoscopy which revealed patchy healing of intestinal walls that had been chronically inflamed for almost 12 years. The GI doctor thought the illness might be changing to be more like Crohn’s Disease, but I am convinced that it was healing which matched my physical symptoms of being healthy.
By December I stopped taking Apriso and have not taken any drugs that are prescribed to treat Colitis since that time or anti-biotics. I do continue to take anti-depressants as necessary and use Valerian root extract for sleep which I find also helps stool be more formed and have more bulk.
Advice on dealing with the fear and risk (perceived or real) around FMT in the face of scepticism by many people’s treating doctors, friends and family.
I ran into a lot of this along the way. Basically what got me through this was I had gotten to the point in the illness where I had run out of options. My doctor only gave me surgery as an option. However I also researched this and realized that if you thought about this logically and looked at the actual facts, most of the bad things that people worried about simply were not true. Even the possible risk of illness could be mitigated using the questionnaire and by testing.
Also realize that doing the fecal enemas is not that bad. After all the illness caused me to poop my pants with bloody diarrhea at times! Not to mention the near chronic “toxic” gas I had. In addition realize that this is a permanent cure. After years of having doctors tell me this was an incurable condition it was hard to believe. But Dr. Borody’s patients did it and so did I! Trust me, if I can completely heal from severe pan Colitis which a doctor said I could not ever heal from, then you can do it too!
Comment on the emotional journey you went through and what sustained you.
I mostly tried to suck it up and focus on living my life just like anyone else and be thankful that compared to other illnesses or injuries I could possibly have had, I looked physically healthy on the outside even if not on the inside. There was denial; I enjoyed being a single bachelor and didn’t let this illness stop me. Then there was depression and despair before deciding on surgery. Then optimism that surgery would make me healthy even as I dreaded it and wanted to avoid it. Then extreme optimism combined with fierce determination when I found out that fecal transplants could work. I was determined to make this work and give it everything I had as if my life depended on it.
The Top 3 things you most love about your post-FMT life.
1. No more diarrhea, blood loss, extreme gas, never ever!
2. No more crippling medical bills and secondary illnesses or side-effects.
3. I can tell the doctors and other doubters that I was right.
The best advice you can give someone trying to make a decision about FMT
Just do it and don’t let the naysayers stop or discourage you. It’s your life and your body (or those of your children or loved ones.) Do your own research as necessary and realize that the risks are minimal compared to other treatments and continued illness, the treatment itself is quite tolerable and is temporary, not forever. Ultimately be willing to take the plunge because it is so worth it, so empowering to be free of this illness!
For additional details about Michael’s story or to contact him see his website FecalTransplant.org , YouTube video , interview & book.