Bob’s Story

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fecal transplant c diff deathIn August, Bob a much loved 57 year old husband, father and state administrator was having regular outpatient treatment in the local hospital in Kentucky, USA, for a non-gut-related condition.  One day he had his regular treatment, developed diarrhea that night, went to the Emergency Department of the same hospital the next day, was admitted, and underwent testing to determine the source of the diarrhea.  

When that hospital failed to come up with a diagnosis, they transferred him to a larger hospital in another city.  Within hours, his family and friends were told that Bob had Clostridium difficile (C. diff). The family begged the hospital doctor to try fecal transplant but were told to stop wasting his time with “quackery”. Bob died the next day.

Not only has this family had to endure the sudden death of their loved one, they’re now also struggling to come to terms with the fact that Bob might have been saved, and that their suggestion was ridiculed in circumstances where fecal transplant has been proven to work for 93% of patients with C Diff.   Regardless of whether the treatment would have worked or not, Bob and his family deserved a chance to find out. What was there to lose?

Unfortunately Bob’s Story is not an isolated event. Unnecessary deaths from C Diff are occurring in hospitals all around the globe.

THIS HAS TO STOP !

It’s been three months since the launch of PoP.  We have now ironed out the technical bugs and feedback on the site has been very encouraging. Dr Shepherd’s interview has been the most read PoP post ever, with half the hits coming directly from people like you sharing on facebook. 

My plan is to now start tackling the Media. On behalf of PoP I plan to write an Open Letter to the American Gastroenterological Association and other gastroenterological associations worldwide, with the support of the US based Fecal Transplant Foundation and the Peggy Lillis Memorial Foundation. A copy will also be issued as a Media Release.  

I will ask these associations to acknowledge:

  • the existence of home fecal transplants

  • the importance of patients discussing FMT with their doctors before doing it at home

  • that this conversation will not go well, if doctors are uninformed, dismissive or accuse their patients of ‘quackery’

  • that negative attitudes from doctors, however well-intentioned are not conducive to collaborative medical care

  • that until more research is done on FMT, a harm-minimisation approach on the part of the medical profession is necessary.

I will suggest they implement 3 measures:

  1. a FMT hotline for doctors to call when faced with someone dying of C Diff

  2. a FMT information kit for doctors to refer to, when patients ask them about FMT

  3. a harm minimization protocol for donor screening and support of those chronically ill patients who choose to do FMT at home (for whatever condition) with a legal disclaimer if necessary.

How can you help?

I need volunteers to collate a list of names and email addresses of journalists who have written previously about FMT (print, online or TV) and any media outlet who might be interested in a story about FMT. I will need the email address, not just the name. If you are living in a non-english speaking country, don’t let that stop you.

Regardless of the response received from these gastroenterological associations, the media release will build on the growing awareness of the link between gut microbiota and illness and escalate debate about FMT. It will pressure governments and the medical community to prioritise FMT research. As anyone with a google alert on this topic knows, the scientists are doing their bit, but they need public support and funding to better understand both the benefits and risks of FMT.  The Fecal Transplant Foundation has a list of research waiting to be funded. But research will only happen if people start talking about FMT in the media in a way that is more than “Ick!  Poop transplants!” 

14,000 people like Bob* died of C Diff last year in the US alone.  It has to stop. This time next year there must be protocols in place to help those like Bob, who are too sick to wait.

Please don’t dismiss this as a good idea that someone else should help with.  On behalf of sick people all over the world I am asking you to find 15 minutes of energy and time, to hit google and send me a list of journalists with names and email addresses. I cannot do this on my own. All journeys start with one step, and if you really care about stopping this madness, the next step is yours.

*Bob’s name changed to protect grieving family

First they ignore you,

then they laugh at you

then they fight you,

then you win.

Mahatma Gandhi

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Categories: clostridium difficile, fecal microbiota transplant

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11 replies »

  1. As long as doctor associate big money with big doctoring, they will dismiss FMT.

  2. You are dealing with a lot of politics and government regulations. The medical industry is unable to see the “Power of Poop” as a cure for C DIFF because of mal-practice. My wife is feeling better every day after i gave her a POOP enema using the “Fleet” enema bottles which are available at any drug store. If I waited for a doctor’s action, she would be dead now. I feel that my fecal transplant using my own untested fecal matter was a risk I had to take. The risk was small because I am healthy, don’t smoke, don’t drink and I eat my share of junk foods with her for the past 37 years. Please people with C DIFF do not wait for the approval from doctors or hospitals, DO IT YOURSELF. Do not wait because C DIFF will kill you or your loved one. You have nothing to lose if the fecal transplant does not work. I did it four times about three months ago and immediately saw results in my wife. She was taking antibiotics for bladder infections for almost a year to finally find out that her anti-seizure medication was causing crystals to form in her urine which irritated her urethra. Doctors are stupid and only listen to drug salesmen. I feel that the best that “Power Of Poop” can do for C DIFF suffers is to really push the procedure of “do it yourself” of fecal transplantation. As far as finding a safe donor, use your best candidate such as a family member or even your mail carrier. Just have them save their next poop in a “Zip Lock” bag and give it to you to perform your own fecal transplant. A spouse that has lived with a C DIFF sufferer has less risk in their fecal matter as compared to not getting a fecal transplant. The “Power Of Poop” drive to legalize fecal transplants for C DIFF patients may take a long time, but to push the “DO IT YOURSELF FECAL TRANSPLANT WITH THE “FLEET ENEMA SYSTEM”” will have immediate results toward your helping people with this deadly illness.

  3. We need both George. There are comprehensive DIY instructions on this site however rightly or wrongly many people are too scared to do anything without their doctors permission. The smallest journey starts with one step, acceptance of FMT is growing and we will get there in the end.

  4. I am a healthy 51 yo woman who ended up with C.diff. after taking powerful antibiotics to treat cellulitis. After 10 days on Flagyll the diarrhea came right back (and really never resolved) and I was so sick of it! I am a Registered Dietitian and had been reading about fecal transplants for a few years. After doing extra research I decided to do a fecal transplant enema using one of my children’s stool. Thank God!! The procedure was simple and over night I was cured!! Miraculous. I would encourage anyone in a similar situation to at least consider a fecal transplant enema.

  5. I contracted C.Diff from my place of employment & had to be off work for 11.5 weeks to recuperate. That was in 2012. Since then I’ve written to numerous state reps, senators, congressmen, and even the CDC pleading with them ro change the laws and have this guttural bacteria tracked just as MRSA, AIDS, TB, and other diseases are tracked. This has fallen on deaf ears. I was even terminated from my job where I was vested and am still suffering from C.Diff side effects. It certainly has changed my life and no one should have to suffer when tracking would
    definitely help. I will continue to write letters until some changes are made. There is no reason for this to be over looked, fall on deaf ears or have a blind eye turned toward it. Even when it was brought to the attention of my employer they chose to lie about it’s existence, knowing that I was not the only one at the time with C.Diff. From the research I’ve done I’ve found that nearly 50,000/per year die in the US and that it has been used as germ warfare in third world countries. My heart goes out to anyone who has suffered from contracting it and certainly to those who have lost a loved one. It took the doctors ten (10) days to find and diagnose the problem. If I had not been so persistent the out come may have been much different.

  6. i got C-diff last February and my Doctor ignored it and failed to share with me. I then got bronchitis and she fed my C-Diff with more antibiotics and steroids. I then ended up with pneumonia and was hospitalized and my C-diff was strengthened with IV antibiotics while my Doctor was shopping in Miami.
    I was finally diagnosed in May and went all Summer trying Flagyl, Dificid and Vanco with no relief. Hospitalized twice, still no answers. Set an appt. Wirh the Mayo Clinic for an FMT on my own. Couldn’t find a donor. Had FMT with Dr. Shepard in September. C-Diff gone but damage and symptoms remain. Although I am still off work sick mentally and physically drained and still can’t eat I am determined to fight whoever I need to. I have marketing, business, and Public Speaking skills and education. I want to tell my story and educate everyone so they never have to go though what I have. I want to start an organization to educate the public so they’ll know what questions to ask and demand answers! Please help me as I have to help change things. What can I do?

  7. Thanks for your interest. It’s nice to see someone prepared to help. There are already two organisations in the US educating the public about FMT and C Diff. They are the Fecal Transplant Foundation and The Peggy Lillis Memorial Foundation. It might be worth reviewing their websites before your starting your own organisation. Of course we would also be more than happy to have your assistance here at thepowerofpoop.com which is an international FMT information website.

  8. I am a c diff survivor, I recently relapsed under antibiotic treatment even though I was taking s. bouliardi and extra strength probiotics, which have worked for me in the past. My first c diff infection was brutal, and even though I ‘came back’, you never come back all the way, I had a B12 problem I’d never had in my life. I have nutrition absorption problems, I could go on. Beating it is tough. As for those who survive and the antibiotics work for you, and even for those who don’t I highly recommend the following for healing your gut / gastro tract / bowel. I bought the book, followed the website until I got the book, and I believe following this saved my life. When I finally got into the specialist 8 months later, he told me ‘what ever you’re doing keep on doing it’ was he interested in it ? no, but I kept on doing it. Fallen off the wagon in recent years, but back on the program. I, after going through all the treatments, seeing a naturopath, and a chinese doctor for acupuncture etc. she told me I had so many toxins in my system it had caused liver damage. None of my doctors really concerned themselves, as long as the diarrhea stopped they just said take B12 every day and try to eat whatever you can digest. Not too helpful. So I went looking for help, and thank god I found Elaine Gottschall’s book and scientific knowledge. I hope it can help you to.

    Breaking the Vicious Cycle Intestinal Health Through Die Elaine Gottschall, B.a., M.Sc.

  9. I forgot to add that fecal transplants should be available to c diff patients at their request. It’s a tragedy that people are losing their lives to this disease and a simple procedure has the chance of saving them. In future we need to have an additional antibiotic given to anyone who takes antibiotics that enable c diff to explode in their gut. Antibiotics have to evolve to deal with this problem i.e. also deal with the c diff. This is a huge huge problem. My research led me to understand that in Europe anyone coming into hospital is asked to start taking s. bouliardi before coming to hospital and they are given it throughout their stay. This is standard protocol. We need change. I for one, now having a relapse, will refuse antibiotics unless I’m given Flagyl to take at the same time. I hope this will be my last relapse.

  10. Just lost my dad to this I want to help

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