Friday, November 9, 2012

Welcome

Hi everyone!

I created this blog for anyone who has inflammatory bowel disease (IBD) and is looking for an alternative to standard drug therapy. My daughter was diagnosed with ulcerative colitis (UC) in 2011 and had serious problems with her medications. Rather than stand by helplessly as the flares ravaged her body we decided to look into this unconventional treatment. But we didn't know how, and had a difficult time getting started. So I wrote the book that I wish had existed for us when we were starting out.

Find it online at Smashwords and soon at other online retailers.

Although fecal bacteriotherapy is now available in a clinical setting for C. diff. infection, it has not yet become a recognized treatment for UC or crohn's-colitis. We did our research and found out that getting this treatment would be difficult in the U.S., and expensive even if we found a provider willing to do it. We therefore got the nerve up to do it at home, and despite the drawbacks it has been the right choice for us. My daughter's symptoms are well under control and we are hopeful for a sustained, long-term remission with continued use.

Our experience has been very positive (despite obvious esthetic drawbacks and natural revulsion at first thought) and I hope it will be helpful to you or someone you love. 
Please feel free to add your comments or questions and I will answer them to the best of my ability or refer you to a source for additional information. 


Here are some links for background information to get you started:

What is fecal bacteriotherapy? 
Does fecal bacteriotherapy work for ulcerative colitis? 
Has fecal bacteriotherapy been tried on immune-compromised individuals? 
Where can I get more information about fecal bacteriotherapy? 
http://www.ncbi.nlm.nih.gov/pubmed 
(Put “fecal bacteriotherapy” in the search field to access 40+ articles.) 

Keep your spirits up and don't lose hope!

6 comments:

  1. Thanks for a great site! And did you catch this in the news? Instead of using all of the bacteria from a fecal transplant, scientists found just 6 species (from feces) that eradicated C. diff infection.

    http://www.plospathogens.org/article/info%3Adoi%2F10.1371%2Fjournal.ppat.1002995

    Best of luck,
    John
    New Paltz, NY

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  2. Thanks, John, I appreciate the info. I think we're at an exciting threshold in human knowledge of the role of our microbial inheritance. It's great that the subject is being taken seriously. Thanks again!

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  3. Hi Vivek, was your daughter's UC under control at the time you began FMT? How many infusions were needed and what is the maintenance period? I hope your daughter is doing beautifully well!

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  4. Hi, Massybird. My daughter's UC was active at the time we started doing FMTs. Since my little ebook came out there has been a groundswell of interest and information about FMT. The best source for information currently is a blog called The Power of Poop. From there you can "friend" Sally Brown on Facebook to be entered into a support group specifically for people interested in FMT. I highly recommend these two sources for information about your questions and also support for the ups and downs of treating these terrible conditions. Let me know if you need additional info and i'll provide what i can.

    My daughter is doing very well, thank you. In our case the FMT did not completely clear up the UC, but - and i've found this to be true of others as well - a combination of diet, FMT, oral probiotics, and sheer persistence seems to have paid off for her. She is in remission currently (hard to believe after symptoms having gone on seemingly forever) and, as she puts it, "feels totally in control of the disease."

    Good luck to you and again, let me know if you need additional pointers.

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  5. Thank you for being very honest about FMT. The more I read about it the more I realized that it is not a 'cure' for UC even if it has some positive effects for the person being treated by it. Of course we all would like to find the root cause of UC so we can treat it accordingly but it is a Pandora's box and the greatest mystery of my life.

    I tried FMT 4 times in the past two weeks during a flare. I do not know if I did myself any favors by trying it during that time as I am now on some heavy duty Prednisone, 40 mg, hoping the bleeding will stop. If I were to do it all over again I would make sure that my UC is somewhat under control before trying FMT. Maybe others had a different experience than mine. I hope so. It could be that my flare was ready to rage regardless of what I did. I felt it coming for over a month - joint pains, headaches, etc.

    I know that UC is an adventure that is custom made for each individual. I have had some great success with SCD in the past but veered away from it this spring and ate rice and potatoes as well as diary. I felt fantastic for a month or two, gained 15 lbs, my energy level was as good as it was six years ago when I was first diagnosed. So good in fact that I started drinking some wine here and there, a big mistake because it is one thing that will destroy all the hard work I put in following a strict diet. I just want to feel normal and partake in life like my peers do but I know that it is something I have to cope with and my life has been changed forever.

    I do not expect all the thing that work for your daughter to work for others but if you could share what dietary and life style changes your daughter had to make in order to regain control of her life, I would greatly appreciate it!

    Thank you so much again for sharing this information with me and others. There is so much speculation out there and promises of miracle cures but if you are a veteran of UC like myself, you know there is no such thing! But there is hope that you can manage this disease with a lot of hard work...

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  6. Hello again, Massybird, your struggle sounds achingly familiar. I would prefer that my daughter would tell people herself about her diet, but she is too busy enjoying her life right now to focus on the disease. I know she drinks a lot of smoothies, both for energy and for nutrition. The other day i gave her a ride to the bicycle store and she was drinking a rather amazing smoothie of goat-milk kefir (which she drinks every single day), blueberries, spirulina, avocado, psylium husk, local honey, apple, and a few other things. She mixes up the ingredients from day to day, sometimes there's cabbage and carrot in there, ginger, flax seeds, hemp nuts, all kinds of things. She mostly stays away from wheat and cow milk, and alcohol has been a problem for her as well so she mostly avoids it.

    If you are on facebook I _highly_ recommend you join the private Fecal Microbiota Transplant group, or at least familiarize yourself with the separate Power of Poo blog - it is a gold mine of information. Many other people have taken FMT more seriously than we did, and their persistence has paid off, in combination with other factors such as diet. I am sure that, even though FMT is not usually the full solution for IBD, that it nevertheless is a powerful treatment that should be included in any plan to bring UC under control.

    Good luck to you. In my daughter's case the UC has been tamed to manageable levels, and i believe you too can bring yours under control no matter how ferocious it can be when it is active. I have to say probiotics (VSL#3 originally and now goat-milk kefir) have been a key ingredient in my daughter's maintenance plan, and FMT can be seen as "the ultimate probiotic."

    I feel that my daughter's immune system did get a boost from the 14 FMT infusions we did, that they were a key part of the ongoing recovery/remission she is currently enjoying.

    Please do check out the blog i mentioned and consider joining the facebook group - there are now many knowledgeable and helpful FMT'ers out there, and you will also have the benefit of getting the information directly from the patients rather than secondhand from a caregiver.

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