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DeenaH 01-18-2013 06:36 AM

C-diff
 
I am in the hospital and diagnosed with CDiff and pneumonia. I am pretty sure I contracted it after lung surgery 1 1/2 years ago, but the tests kept coming back negative back the. I have had issues with diarrhea ever since. We assumed it was the tykerb in combo with the various chemos. FF to this past weekend. The diarrhea became so intense it was out of control. I just finnished. Gamma knife and WBR for brain mets which I'm sure adds to my ailments. So this time the cdiff culture came back positive. What can I expect? I'm worried about the state of my bowels if the cdiff has been wreaking habit for that long. Should I be asking to be scoped to check things out? Any other tests to ask for? Considering taking so many antibiotics for lung infection, I am now taking 4 at the same time.

Any input from those who have been there, done that would be helpful. How long do you think they will keep me in the hospital? Thanks for reading. This cdiff thing came out of nowhere since we thought we were done with the in 2011!

Deena

Hopeful 01-18-2013 07:22 AM

Re: C-diff
 
Deena,

Coincidentally, the New England Journal of Medicine just published a paper on the treatment of CDiff:

http://www.nejm.org/doi/full/10.1056...=TOC#t=article

I am so sorry you are having to go through this. I hope you find a treatment that works.

Hopeful

DeenaH 01-18-2013 07:54 AM

Re: C-diff
 
I know, poop enimas from healthy people! So gross, but I might do it if the antibiotics don't work.

Lani 01-18-2013 09:25 AM

Re: C-diff-- "Repoopulate"--I kid you not!
 
C difficile: Synthetic Stool Substitute Clears Infection

Jenni Laidman

Jan 10, 2013


A synthetic stool substitute successfully ended bouts of recurrent antibiotic-resistant Clostridium difficile in a proof-of-principle study published January 9 in the inaugural issue of Microbiome.

The study, which involved just 2 patients, suggests the promise of an off-the-shelf alternative to the transplantation of donor stool to control antibiotic-resistant intestinal bacteria.

Elaine O. Petrof, MD, assistant professor, Department of Medicine, Infectious Diseases, Kingston General Hospital, Queen's University, Ontario, Canada, and colleagues created the human synthetic stool mixture by culturing the stool microbial diversity of a healthy 41-year-old woman and brewing a mixture of 33 different intestinal bacteria isolated in pure culture. They named the synthetic stool mixture RePOOPulate.

The bacterial mixture was infused into the colon of 2 patients in their 70s, both of whom were infected with a hypervirulent strain of C difficile, ribotype 078, and who had failed at least 3 courses of antibiotic therapy.

Both patients returned to normal bowel patterns in 2 or 3 days and remained symptom-free for 6 months. At that time, rRNA sequences representing the RePOOPulate mixture made up 25% of the gut bacterial population.

"It's an interesting paper and pretty exciting," Colleen Kelly, MD, a gastroenterologist from the Center for Women's Gastrointestinal Medicine at the Women's Medicine Collaborative, Providence, Rhode Island, told Medscape Medical News in an email. Dr. Kelly was not involved in the current study.

"I've been doing fecal transplants for nearly 5 years and have treated 90 patients with about a 94% success rate. Identifying a suitable donor can be difficult in some patients. Also, the cost of donor screen labs (which is not always covered by insurance) is expensive. The process of donor eligibility determination is time consuming, and some doctors face institutional barriers that prevent them from offering [fecal microbiota transplantation]. If a safe, effective product was available, many more patients could be treated with [fecal microbiota transplantation]. Additionally, this compound would make the necessary clinical trials much easier to do." Dr. Kelly is involved in what is considered the first randomized trial of fecal transplant for recurring C difficile.

C difficile, a Gram-positive, anaerobic bacillus that produces a toxin, is the source of 15% to 25% of antibiotic-associated diarrhea.

Researchers in the Canadian study cultured 62 different bacterial isolates from donor stool, identifying them by 16S rRNA gene sequencing and profiling them for antibiotic susceptibility. Any isolate resistant to antibiotics was eliminated. The result was 33 isolates sensitive to a range of antibiotics and relatively easy to culture under anaerobic conditions. The researchers used the profile of a healthy donor as a guide to relative abundances of species to include in the probiotic mixture. The purified intestinal bacterial cultures were grown in "Robo-gut" equipment that mimics the environment within the large intestine.

The authors note that the creation of a synthetic mixture allows for control of the composition of the bacteria the patient will receive in a reproducible species mix. It also eliminates the worry of viruses or other pathogens that can ride along in donor stool.

In the past, researchers have tried single probiotics in attempts to clear C difficile infection. "They have not really ever [been] shown to manage multiply recurrent C diff," said Cliff McDonald, MD, chief, Prevention and Response Branch, National Center for Emerging and Zoonotic Infectious Diseases, Centers for Disease Control and Prevention, Atlanta, Georgia. "I think it's conceivable [to use] a cocktail or several cocktails — there might be quite a few that work pretty well. It might be hard to say which cocktail works better than the other. It may depend upon the people treated, too," Dr. McDonald told Medscape Medical News. He was not involved in the Microbiome study.

Dr. McDonald also noted that a group from the Sanger Institute published a paper in October 2012 in PLoS Pathogens reporting the successful use of a cocktail of 6 bacteria to clear C difficile infection in mice.

The results of the Canadian study are "fantastic," said Mayur Ramesh, MD, senior staff physician in infectious disease, Henry Ford Hospital, Detroit, Michigan. "That's what everybody's looking for, including our own team." Dr. Ramesh has developed a simplified method of preparing donor stool for transplant and treatment of C difficile infection, but was not involved in the current study.

A synthetic substance could resolve the significant "yuck" factor that makes physicians unwilling to perform stool transplants, according to Dr. Ramesh. "Nobody wants to do it," he said.

Patients, in contrast, accept the treatment easily. "I have not a single patient refuse. I have people fly in from California, and I'm in Detroit," he said. "American doctors are shunning things like this, even though it saves lives. This is the best treatment for C difficile."

The newly published study included a 74-year-old white woman who suffered 6 episodes of recurrent C difficile infection during 18 months after orthopedic surgery and preoperative treatment with cefazolin, and a 70-year-old white woman who had 3 episodes of recurrent C difficile infection after treatment with cefazolin for cellulitis. Both women received additional antibiotics after the probiotic transfer. One patient received several courses for recurrent urinary tract infection and the second for recurrent cellulitis. Still, by the end of 6 months they had no return of C difficile infection symptoms and maintained a diverse population of gut bacteria.

Recurrent C difficile infection is largely a result of the inability of normal intestinal flora to recover from antibiotic treatment.

This work was supported by the Southeastern Ontario Academic Medical Association and the Physicians’ Services Incorporated Foundation, as well as a University of Western Ontario Academic Development Fund grant. Dr. Petrof and 2 coauthors have a provisional patent together. The other authors, Dr. Kelly, Dr. McDonald, and Dr. Ramesh have disclosed no relevant financial relationships.

Microbiome. 2013;1:3.

StephN 01-18-2013 11:07 AM

Re: C-diff
 
So sorry about all that! My mother had a bout with c. diff several years back, and it was not until she went to a gastro intestinal specialist who was smart that they diagnosed it. She did have the scoping tests which showed where the infection was lodged. At least she did not have to have a full scale episode and lengthy hospitalization before they decided that was her problem.

About the poop treatment. I have a friend who had one early last year. Her son was the donor, and she really got some relief pretty quickly. Thankfully all is still well in that department, so this may be something you want to do sooner rather than later. Those many courses of antibiotics have side effects, and hopefully you can get things to a point where they feel the PT is a good option.

IrvineFriend 01-18-2013 01:24 PM

Re: C-diff
 
We were talking about this study at work yesterday (we manufacture a test for C. diff) and can't imagine how someone came up with the idea?!

I hope you start feeling better soon but it is hard to treat as it's resistent. This new treatment seems very effective -- I would just have to keep my mind off what I've been infused with!

-Julie

Mandamoo 01-18-2013 02:47 PM

Re: C-diff
 
I'm so sorry to hear Deena - I had a mid case of C-diff that was healed well with Flagyl - caught very early I think. I'm sorry to hear you have been dealing with brain mets too - are you still on your cocktail that saw big reduction in your lung disease ?
I wish you well - interesting advice here A xxx

KDR 01-18-2013 04:30 PM

Re: C-diff
 
Deena,
This is just unbelievable! Whatever your team decides is best for you, get well soon! I cannot fathom all of this at once, but I know you will get through it...
Warmly,
Karen

Becky 01-18-2013 05:14 PM

Re: C-diff
 
Cool Breeze also went through this last summer. You should private message her.

jellybean 01-18-2013 08:23 PM

Re: C-diff
 
Hi Deena,

I am sorry you are in the hospital and you have c-diff and pneumonia. Cancer is more than enough, I think!

I read an article recently, and the poop transplant is extremely effective. I know it seems really gross, but the chances are very high it will help get rid of your C-Diff. I would go for it.

Take care,


Jill

Pray 01-19-2013 01:04 AM

Re: C-diff
 
I also am so sorry this all going on. Please know that you are in my prayers. Gods blessings to you.

NEDenise 01-20-2013 11:29 AM

Re: C-diff
 
Sheesh, Deena!
And people think I'm having a rough streak of luck lately!
Try to take deep, calming breaths and hang in there.
Sending gentle hugs
Denise

CoolBreeze 01-21-2013 06:03 PM

Re: C-diff
 
My infectious disease specialist said I had one of the worst cases of c-diff he ever saw where the person survived with their colon. When I had c-diff I ended up in ICU and in the hospital for 7 days. I got Pseudomembranous pancolitis. They almost took my colon out, and said if my blood pressure dropped one more point they would, but fortunately, I responded to the flagyl and vancomycin they gave me. Good thing too as that surgery only has a 20% survival rate.

It was the worst experience of my life and it took me months to recover.

Now I cannot take antibiotics ever again. Great thing for a cancer patient.

If it ever comes back, I will request the fecal transplant immediately.

People do have it off and on for years, and it is notorious for not showing up in stool cultures. People should have three cultures now, and if any one is positive than you know you have c-diff. It also has that distinctive smell so isn't hard to diagnose.

From now on, do not take antibiotics except vancomycin or flagyl. Antibiotics will wipe out your good gut flora and let the c-diff take over and it turns to poison in your colon Eat yogurt daily, a good yogurt. Eat kaffir. You want to do the opposite of a healthy diet with this - no fiber until your colon heals. You also need to take probiotics - they will put back some of the good flora - I took Florastor and Culturelle. Still take them, actually but one is a yeast so don't do it daily.

If your colon was damaged (as mine was) you would know. I had great pain, swelling, etc.

It depends on the severity how long you will be there. They put me on a no food diet to let me colon heal, then gradually added in liquids. I met with a nutritionist before I left to learn how to eat for c-diff.

When you get home, you need to wash all your clothes and your sheets in hot, soapy water with bleach. Also, you will need to bleach down your house. C-diff is caused by a spore that can live for MONTHS outside the colon. It is killed with hot water and bleach. It is not killed by hand sanitizer. You can re-infect yourself if you aren't careful. You also will now need to be obsessive about washing your hands, for at least six months.

I'm very sorry to hear that you have this terrible disease.

The traditional treatments are flagyl, vancomycin. If those don't work, there is a new one called dificid. And, then fecal transplant, which is gaining traction in the medical world.

Good luck. Lots of us with lowered immune systems get it - it is rampant in hospitals. I got mine shortly after my liver resection. The c-diff was a LOT worse than having my liver removed.

7andcounting 01-22-2013 08:51 PM

Re: C-diff
 
Deena, Thinking of you and praying for your swift recovery. So sorry you have to fight additional crud. You are being being brave, as always, in the face of daunting circumstances. You are such a fighter. Thank you for inspiring so many by your courage, spunk and drive.

Hugs to you,

7


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