14,000 reasons to support Catherine Duff’s Fecal Transplant Foundation

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Catherine Duff

 

Whenever one person stands up and says ‘wait a minute this is wrong”

it helps other people to do the same.

Gloria Steinem

Catherine Duff is a C. diff. survivor, and was the sole voice representing patients at the US Food & Drug Administration workshop on FMT held in May. But at least the military was there. Yes, that’s right; the military scored an invitation.  Yet not one patient support group was invited in circumstances where there are many to be found within seconds of hitting google. Catherine found out about the workshop by accident.

On the first day of the workshop, Catherine sat quietly fuming at this oversight and what seemed to be the cold complacency of the group as it discussed FMT in detached scientific terms. As in the story of the Emperor and his new clothes she wondered if she was the only person who could see that there was something missing. The next day she tore up her prepared speech and wrote a new one. When she took to the lectern she was trembling, but she knew she was speaking for the 14,000 people who had died unnecessarily of C Diff the previous year. By the end of her speech, she was in tears. As she tentatively raised her head, she realised that she was not the only one weeping.  She received a standing ovation.

The mood in the room instantly ignited. Gone were the detached veneers as doctors heatedly tried to explain to the FDA that this is what they had to deal with every day – patients losing their health, their jobs, their savings, their sanity and their relationships as a result of this debilitating degenerative condition. And now they were going to have to say “sorry, I’m not allowed to offer you a fecal transplant.”

After the meeting Catherine was deluged with a line of doctors and others wanting to speak to her. She realised that she was not as alone after all.

Catherine had attended the FDA workshop because she had decided to establish the Fecal Transplant Foundation, a not-for-profit entity that will raise funds for research, community education and patient support. Many of the doctors present at the FDA meeting have offered to help. Projects the foundation will sponsor include raising awareness about fecal transplants, providing grants for research and clinical trials, helping to create a central database on FMT treatments and results, which will include an independent review of this data, supporting the development of donor bank technology and protocols, facilitating communication between patients and providers, arranging access to providers and clinical trials, current scientific and regulatory information, as well as patient’s stories.  Catherine is also organising a petition to present to the FDA to allow clinic based FMT to continue while their investigation is underway. She will present this with a collection of real life stories of people whose lives have been devastated by C. diff.  She is also preparing a press release for major U.S. media outlets to gather support for the mission of The Foundation.

When I spoke to Catherine I asked her about the challenges she sees for the Foundation over the next 12 months.

It is critical that we first receive our 501C3 status to ensure that donations are tax deductable. We then need to attract a cohesive reputable Board to oversee the Foundation. It is a challenge to find suitable people as they must be dedicated, free of conflict of interest and at least initially willing to work without remuneration.  My over-riding challenge will be to make sure we are moving forward, regularly assessing our progress and taking the pulse of the current public and regulatory attitudes.

What motivates you to get out of bed daily to do this job?

Knowing that there is somebody out there, actually millions of somebodies out there, without anyone working for their best interests.  I was in that position and I felt totally helpless.  I don’t want anyone else to feel that way.

How is your health these days?

I am rid of C Diff but still have significant residual health issues. It has left me with malabsorption and gut issues and I particularly struggle to absorb calcium, which has aggravated longstanding orthopaedic problems. My immune system is not strong and I have to be careful not to expose myself to hospitals and medical facilities as I can’t risk getting sick and taking anti-biotics again.

Where did you first hear about FMT?

One of my daughters read about it and sent me a link. I was desperate and could not find a doctor who would perform FMT, so my doctor agreed to screen my husband as a donor and we did home FMT.  Six months later, after another recurrence, I received FMT by colonoscopy at a medical facility.

What kept you going through your darkest moments? 

I would like to say that I wanted to live for my kids, grandkids, and husband. But the truth is that in my darkest moments all I wanted was to die. I really don’t know what kept me going. Some kind of life-force within I guess.  I believe in God but I don’t know if he has a personal interest in whether I live or die at a particular time.  There were several times when I simply accepted that I had lost the fight. The bugs had won. But I didn’t die. I don’t know why.

How did chronic illness affect your relationships with people?

There was collateral damage to a lot of relationships. Some people became more incidental. They couldn’t deal with my illness or got sick of hearing about it.  My husband has 2 kids with Crohns disease and is comfortable in the role of caregiver, so that made a big difference. 

What is the cruellest thing anyone ever said to you about your condition?

When I had to go on anti-biotics again after having contracted C. diff. the previous time, someone reminded me that the definition of insanity is doing the same thing over and over again and expecting different results. What was I supposed to do? I had the choice between losing my colon or going on anti-biotics again so I chose the anti-biotics. It’s tough when people try to have an opinion on something they know nothing about and are not going through.

What was the most encouraging thing anyone ever said to you. 

The most helpful advice came from friends who helped me to work out what to keep and what to let go. They advised me to let go of people who were not good for me, and that’s what I did.

What advice do you give to people who are now in the situation you were in, with anti-biotic resistant C. diff.?

My advice as the Chairman and CEO of The Fecal Transplant Foundation is to fight as hard as you can, within the system, for fecal transplant. My advice as one human being to another,  in the situation I was in, is to do whatever you have to do.

To donate to The Fecal Transplant Foundation or offer your help click here.

To read the speech that earned Catherine a standing ovation at the FDA workshop click here.

 

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10 replies »

  1. I just read about you. I have had C-diff since 2007. Became resistant to vancomycin. Had toxic mega colon. A parent who died as a result of cdiff.

    It has affected my immune system . My first FMT was Dec. 17, in NY with Dr. BRANDT.

    I ALSO HAVE FINE FIBER NEUROPATHY FROM THE FLAGYL.

    PLEASE CONTACT ME TO HELP. I HAD AN ADVERTISING AND TV CAREER.

    My husband left. I became ill in FL in 2007.

    Shirley

  2. My wife has been suffering from C-diff for the past six months. Doctors keep giving her antibiotics.

    I would like for her to have a fecal transplant done so that perhaps it will cure her.

    We live in San Antonio, Texas. Do you folks know of any clinics, hospitals, or doctors who perform

    this procedure here in Texas? If so, I will appreciate you emailing me the name and address where I

    can take my wife to have the procedure done. By the way, she is also a “kidney transplant” patient, so

    so it is imperative I find someone who is willing to do this procedure. What kind of fee am I looking for

    having this procedure done is another concern.

    Looking forward to hear from you,

    Jose Gomez,

  3. Please see the list of clinics on the website.

  4. My son who is 27 has severe crohns. He wants to try FMT at home. He lives in Indianapolis area. Would you know of a doctor that would screen my stool as a donor? My sons GI will not. All she wants to do is push the meds on him. Looking forward for any help in this matter. Thank you

  5. I have a friend who had an illeostomy 40 years ago! She had a life
    expectancy of only seven years at that time, after the surgery. She
    has had chronic/severe diahrria now for two years and lab tests indicated
    c-diff. She only has her small intestine…no large colon or anal tract. Her
    food mostly goes right through her after eating. I am not sure how she is
    still living…sometimes food comes into the bag the same way as eaten. She has lost considerable weight. What I’d like to know if this fecal
    transplant can be done through the nose via tube and would it help. She
    can’t take antibiotics since the condition worsens with the meds. She
    lives mostly on yogurt, applesauce, toast and eggs. Doctors today are too
    young to know much about the surgery she had since it is no longer done.
    And, she hasn’t found one doctor in two states that have been able to help
    her. I do some research on her behalf and common sense tells me that
    vitamin injections may help her since few get through into her system but no doctor has recommended it. Some of told her to just live with it! So,
    my question would be, can this kind of transplant help her small intestine
    rid itself of c-diff.

  6. FMT works well for C Diff in the large intestine, so it would be worth a try for the small intestine. It can be done through nasal tube or capsules. Please see the clinics list on the website for places that will help as not all doctors understand the therapy. Good luck.

  7. I just read the article that was in the AARP Magazine about C-Diff and information on
    Catherine Duff. I have been dealing with C-Diff for 7 months and was on Vancomycin
    spring, summer and fall. I found out about Dificid Pills which I told my gastro doctor about
    and after my last 6 weeks of Vancomycin and it showed it’s ugly head again, I was told
    I qualified for the Dificid Pills.I was his first patient on them and I told him about them.
    They are very expensive and has caused me to go into the coverage gap for the remaining part of 2014. I now have completed the first dose of 20 pills-completed on November 10th, 2014 and have just contacted Mayo Clinic in Jacksonville 11/13/2014 and am waiting to hear from them.I need to know what my future will be after taking Vancomycin for 6 months. I was due to have a knee replacement and Thank God, I asked for another stool sample to be tested before going in for that surgery. It came back positive again. The Good Lord was
    watching over me. It may clear it up for a few days and then it comes back again. I have family in Carmel, IN and I use to live there, but now live in The Villages, FL. Would appreciate any and all information I can get before I go to Mayo (I hope to be called soon with an appointment date). Thanks so much. I have had C-Diff before back in 2009, was on Vancomycin Pills for 6 weeks. This time I was on Vancomycin Compound Liquid. Any info I can receive is very much appreciate. Thank you again.

    Kathryn (Kay) S. West

  8. Hi,

    I have a 33 year old son who has just been diagnosed with MS. He has diverticulis and probably Irritable Bowel, and is contemplating MS medication choices. All seem to cause diarrhea, which he already has chronically. FMT helped patients in Australia. He’s in Colirado, but we will go anywhere in the US to try aFMT. What do you think of this choice and where can we go?
    Thanks!

  9. FMT is not available in the US for conditions other than C diff. However you may find a practitioner willing to assist you with testing for DIY FMT. Please see the list of clinics on the website and join the facebook discussion group to talk to others in your situation.

  10. My advise is to get this procedure/cure out to as many people as possible, both in the medical profession, etc.
    Big Pharma, Insurance conglomerates, Doctors who are under the thumb of all of those mentioned, will try to influence politicians to outlaw this procedure.
    Why do you think after many, many years of such being beneficial healing/helpful little is known by the general public?, because it’s too simple where the poorest on up can benefit without paying ridiculous doctors/hospitals costs and everything connected to this racket and the ensuing medications from big pharma?
    All of these crooks will try to have governments play along and shut down this holy grail.
    Who knows how far these people will go?, maybe your very lives may weigh-in-the-balance?, because it comes down to interfering with their making big-time money.
    Spread this information out and how to develop this technology in the event where you all disappear one day.

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