Finally, a REAL cure

[Rose2xsurvivor]

Thanks for the well wishes Kathy and Bonnie. It's unfortunate that fecal transplants aren't more readily available in the United States and that I had to try and replicate, as closely as I could, the medical procedures that are being performed in hospitals. Ideally, every patient would have access to the medical treatment they need, but that is not always the case. To reiterate your point Kathy, since I am not a medical doctor and have no medical background, I am not offering medical advice or suggesting that others do what I did. However, I share my story as I believe it saved my life. Better yet, it's been six weeks, and I feel fabulous! Blessings to you all who read this post.

[Bobbie]

My name is Bobbie - not Bonnie. Glad you had the "guts" to try a new treatment and glad it worked.

[Kathy George]

Rose, I hear you loud and clear!!!! I felt that I was going to die and that is why I decided to do the Home Enema Infusion Therapy. I did 8 of them and it worked. Prior to that, I couldn't eat solids for 4 plus months, was wearing depends, and couldn't leave my home for 4 months. My GI developed a deaf ear, and no one would hear my plead as well. If it were me, I would have done the same thing!!! Besh Wishes and May Continual Good Health go Your Way!!!!!

[Mommy23]

I agree, so unfortunate doctors won't help. I say, do what you need to do....enemas saved me, because no doctor would. I'm not recommending the "drinking" treatment, but I do understand why you may have chosen that method.

On a side note, apparently there is some talk of a "pill" designed and develop to hit from the top down. I think Beth may know a bit more about it.(doctor in calgary has used it) I did also read an article , about the development.(can't find it now) Certainly would be easier than doing the infusions.

Glad you are well!

[Bobbie]

See if you can find more info. about a "pill" too. I heard something about it a long time ago. Maybe I'll google it.

[Mommy23]

Did try googling before my last post, couldn't find it though.

But did come across this very interesting article that uses the infusions/transplants for more than cdiff, actually most of the article is about Borody's current research.
http://classic.the-scientist.com/news/display/57795/

[Bobbie]

Thanks. Posted in CDI-Infusions/Transplants so info. won't get lost so easily.

[Mommy23]

I also asked Beth22 what/if she knew about the pill. Apparently Dr Louise out in Calgary has used it for patients unable to "hold" the infusions. The pill is made from donor stool for a treatment of 10x for 4 days. Don't quote me on the info, but sure is great that someone is doing this!

[debdee]

Rose, I'm so glad that you are better. I know the desperation you felt. Thank you so much for sharing your experience and story. I pray you continue to feel better and stay well.

[Rose2xsurvivor]

Thanks so much for the well wishes. It's been nearly two months since I performed the desperate act, and my good health continues. The very best part is that I am no longer living in fear from C-Diff because the infusion of my husband's bacteria was so incredibly effective (It nearly killed me twice at age 36 and age 45. I lived through so much pain during my first battle with C-Diff, which resulted in pseudomembraneous colits and toxic megacolon, that I, at times, had symptoms similar to post tramatic stress syndrom for several years afterward.) What was extra scary is that the infection can take a completely healthy person and devastate one so quickly. I am relieved that treatment is within my control - I can do the transplant myself if I ever have trouble again getting a doctor to help me. For me, the fecal bacterial therapy was truly miraculous. Good wishes to you and all.

[Kathy George]

Rose, It would be nice if you could keep us updated as to your C-diff status. We all appreciate your honesty and for explaining your story!!! Wishing you continued good health!!!!

[beth22]

I don't remember the poster's name, but the mother of the girl who had a brain tumor and had toxic megacolon and was ready for surgery posted that her daughter's colon was saved at the last moment because her mom insisted they try an ng tube stool transfer and it worked. The girl still has her colon, although she required a second transfer.

[debdee]

Rose and Beth, Both of your posts give me so much hope. Even though I'm not at the point of needing to do an infusion right now, and hopefully I keep getting better, I kind of feel like what you described, Rose, post traumatic stress and weird symptoms of the c.diff wanting to start up again. It's good to know that even after suffering so long with the first c.diff episode, you still were cured and feel better than after your first bout with c.diff. It gives me hope. Thank you for sharing.

[Rose2xsurvivor]

Warm Greetings,

In response to Roy's question, yes it was toxic megacolon as diagnosed by a doctor. I was quite literally near death - probably just hours away from dying. I was bleeding internally, blood count 7, blood pressure 70 over 30 (the last reading I remember), fever, barely held on to consciousness, and, at it's worst, I estimate about 60 bowel movements a day. I was so seriously ill and in such pain that, at the time, it would have been more preferable to die than continue to live. I had to have two blood transfusions. What saved my life was 1000 mg of liquid vancomycin - I think it was four doses per day. That was nine years ago when I was 36 years old. I have only recently come to understand how blessed I am that the GI doctor who took over my case when I was critical didn't immediately remove my intestines and gave me such a rare, high dose of vancomycin. The nurse that participated on the colonoscopy said that I was diseased by CDiff form the very top to the bottom of my colon, and a doctor a Johns Hopkins who reviewed my case said I was fortunate to still have my intestines. For that battle, I did not use a fecal transplant nor did I drink "the mixture." That fact that I lived was most likely that I was very strong before going into the battle and was otherwise completely healthy.

For my second battle, I was diagnosed with C-Diff on November 20, 2010. Although I was again gravely ill and needed 500 mg of vancomycin (4 to 6 times per day) to get it under control, I didn't get as sick as my first battle. I spent eleven days in the hospital. Over the next nine month, my C-Diff was managed with vancomycin, but ever time they tried to wean me, I relapsed. (Please note: The following is not medical advice, just my story.) In the summer of 2010, I began home fecal enemas along with the vancomycin to manage the CDiff symptoms. When I started to have a serious relapse in August of 2010 and couldn't get the fecal transplant in time, my husband and I decided that I should stop taking the vancomycin, that I would drink "the mixture" multiple times, and perform a fecal enema (our attempt to replicate a fecal infusion with a nasal tube and fecal transplant via colonoscopy.) Although I was sick for days afterwards, it worked and I remain symptom free of C-Diff for nearly two months now.

If anything changes, I will let you know. I continue to pray for all who are currently suffering and hope they, too, are fully healed.

[debdee]

Thank you for sharing your story in such detail. You truly have been through so much and it's amazing how you have been wonderfully healed. I pray you continue to stay healthy and never have c.diff again!