Skip directly to search Skip directly to A to Z list Skip directly to navigation Skip directly to page options Skip directly to site content

C. diff survivor and advocate shares her story

Posted on by CDC's Safe Healthcare Blog
Nancy Caralla
Nancy Caralla

Guest Author: Nancy C Caralla
Founding Executive Director,
President of the C Diff Foundation.

My name is Nancy Caralla, and I know all too much about Clostridium difficile (C. diff).  I am a nurse and contracted C. diff while caring for patients suffering from this horrible infection. Now, I am a C. diff survivor. Tragically, our family lost my father from C. diff, too. I know how fighting a C. diff infection can be exhausting on so many levels. It is a physically, mentally, and financially debilitating infection. It has the ability to steal away a loved one, tear away dreams, create added stress on families, diminish financial nest eggs, eliminate employment opportunities, build geographic mobility limitations, and create tears in even the strongest individuals. All aspects of one’s being are involved in fighting a C. diff infection. This is why I have dedicated myself to “Raising C. diff Awareness” worldwide.

The C diff Foundation was brought to fruition in 2012 with a mission to provide education and advocate for C. diff infection prevention, treatment, and environmental safety worldwide. It provides Antibiotic News, Nutrition Support, Government and private Scientific Research and Development Studies, and a CDF Volunteer program. The C diff Foundation hosts a 24-hour hotline to support patients, families, and health care providers through the difficulties of a C. diff infection (1-844-FOR-CDIF).

Our hotline now gets 20-30 calls a day from individuals impacted by this germ. These are some of the most common questions we get asked: 

How do antibiotics cause C. diff?

The antibiotics cause a disruption in the normal intestinal flora which leads to an over growth of Clostridium difficile bacteria in the colon. In November 2012, CDC shared a public announcement regarding antibiotic use: colds and many ear and sinus infections are caused by viruses, not bacteria. Taking antibiotics to treat a “virus” can make those drugs less-effective when you and your family really need them. Limiting the usage of antibiotics will also help limit new cases of C. diff infections. Always discuss the symptoms and medications with the treating physician. Get smart about antibiotics by looking at CDC’s materials online. 

What can we do to stop C. diff?

We can all fight acquiring a C. diff infection beginning with prevention, and C. diff is a preventable infection.

Hand-washing (aka hand-hygiene) practiced and repeated frequently with correct technique aids removes harmful germs, provides patient safety, and adheres to infection control policies.

Environmental safety: Utilizing EPA registered products with “C. diff kill” claim will aid in eradicating Clostridium difficile Gram-positive, anaerobic spores, found to be capable of surviving outside of the body for long periods of time.

As a healthcare professional, how do I protect myself from C. diff?

Personal Protective Equipment (PPE): During the care of a patient diagnosed with a C. diff infection, following infection-control policies, healthcare and environmental service professionals are to wear PPE to minimize exposure to serious workplace illnesses (acute care, long-term care, and home care environments). PPE may include items such as gloves, shoe coverings, and gowns.

Communication:  Contacting and alerting other healthcare facilities, prior to transferring a patient, to report an active C. diff infection to implement and follow contact precautions and isolation policies.

C. diff Foundation
C. diff Foundation

We can all fight acquiring a C. diff infection. C. diff is preventable, and together we can stop its spread.

For more information please visit the Foundation’s website: www.cdifffoundation.org.

Posted on by CDC's Safe Healthcare Blog

30 comments on “C. diff survivor and advocate shares her story”

Comments listed below are posted by individuals not associated with CDC, unless otherwise stated. These comments do not represent the official views of CDC, and CDC does not guarantee that any information posted by individuals on this site is correct, and disclaims any liability for any loss or damage resulting from reliance on any such information. Read more about our comment policy ».

    I got extremely ill with C Diff nearly 3 months ago. I had extreme diarrhea for about 5 days and then started to get very delirious, struggling to stay conscious and started telling my family I was going to die. At this point they rushed me to the hospital where I was diagnosed with C Diff and Sepsis and was in fact in septic shock. A few more hours and I would have actually died. The last 3 months have been hell. 6 Rounds of antibiotics. 1 of Flagyl, 4 of Vancomycin and 1 of Xifaxin. I have been hospitalized twice and am still extremely weak and tired. My last stool culture came back negative for c diff, but the diarrhea never has stopped. After trying basically everything, I was put on Viberzi. This is the only thing that has relieved my symptoms. My GI doctor says I should be prepared to be on it for the long haul as I was literally on my death bed from this infection. I should mention that I am only 36years old and had not taken any antibiotics for over 8 months nor do I work in health care. So no one knows where or how I was exposed to c diff. The struggle now is to try and figure out what made my immune system compromised enough to get c diff that horribly in the first place. The best thing I can say is if you think there is even a chance you have c diff, make them test test and re-test you until they are certain. C diff and sepsis go hand in hand if the infection has gotten that bad. A recent study I read said Abdominal Sepsis has a 72% mortality rate and only about 30% of survivors will make it for longer than a year after being in Septic Shock. Needless to say, don’t let anyone tell you that it is wrong to be paranoid about your health as far as c diff if concerned. It may save your life.

    I had c-riff in 2010 when I had my child because I had group b strep and they game me clindamycin I couldn’t get rid of it and finally had a stool transplant from my husband. Saved my life. Please consider this if you can’t get it to go away, I’m sad to read about all of the people that pass away due to this disease. Stool transplant is so easy and very curative.

    My mother has has c diff 3 times & I am so over it, she has finally been given the ok to have a fecal transplant
    poor mum hasn’t even got a life anymore as inn hosp more than she’s home

    I have cdiff for the fourth time.

    I tried to post a comment a week ago.

    But, post was not put up.

    Is this blog really working?

    I have cdiff from antibiatics and is no joking matter. The pain and the constant bathroom visits are unbearable at times. I got it about 3weeks after i has my prostate removed due to cancer. The drs are talking about removing part of my colon that is infected with cdiff. Dont really know what to do. All this after my wife had breast cancer. All hit us hard at the same time. WE WILL Beat it.

    Misdiagnosed by doctors for decades, I finally diagnosed my own parasite infection of Blastocystis Hominis after researching the internet, which I probably contracted through working in daycare centres. The test came back positive. A doctor made a mistake by prescribing Bactrim which wiped out my gut bacteria and gave me chronic diarrhea and the prescribing doctor would not rectify the condition. I had to go to Emergency and ask for Flagyl myself after thinking this condition was possibly C Diff. (Again after researching the internet). A reluctant doctor gave me the prescription only because it also treats Blasto. There was no definite diagnosis of the condition – C Diff tests could have come back false-negative. The Flagyl got things back to normal within 48 hours but there were frequent relapses through the years to loose stool and diarrhea. My GI specialist refused to give me a FT which I though would finally cure the problem. I would try to get a prescription of Flagyl, to have on hand just in case (not easy, when you aren’t a doctor). Nine years later, three colonoscopies, a dozen negative C Diff tests and after more research and stocking my cupboards with dozens of different types of probiotics faithfully taken along with fermented foods and a shift to a healthy diet including yogurt and kefir, I contracted C Diff which tested positive this time. Back onto Flagyl, my old friend again fixed the problem within 48 hours and once again supplementing with probiotics and beneficial yeast – SB. I am not a doctor but now know more than many of them do. I am 66 and this all started 10 years ago with decades before that of GI problems misdiagnosed as IBS.

    Everyone needs to be aware that BLEACH kills C Diff. Lysol doesn’t mention it, and most hospital and home cleaning products do not contain bleach. Chlorox germicidal is approved for killing C Diff. Be sure to use a product approved for killing C Diff. The spores can dehydrate and live for months, waiting for a host. BLEACH BLEACH BLEACH!!

    Okay…I am going to be tested for C-diff as I’ve been experiencing gut wrenching pain and diarrhea for quite some time. All tests have been done: colonoscopy, endoscopy, ultra-sound of abdomen area, and now a gastric emptying to see what is causing the problem. But today, my gastrologist recommended (finally) that I be tested for C-diff!!!!
    I keep my grandkids every weekend, and have been wiping the bathroom seat with Lysol each time I use it…but I’m concerned about my little grandkids! Should I be concerned. I must tell the parents…but am concerned the barn door has been left open too long! I am so concerned about them!

    i survived C-Diff! My GOD what a horrible thing one can experience. My Aunt died of C-Diff 8 months ago She was in her 80’s. i am 60 and have MS. Feel so darn lucky to have made it! I live in a nursing home and so glad to be back with my friend,

    My 53 year old husband has had chronic diarrhea for several years. He has been to several doctors and had colonoscopy several times. It is ruling his/our lives as he can’t go many places for fear of this explosive and uncontrollable diarrhea. I’m wondering if he may have c.diff and if it is possible that someone can have it for years.

    Any advice will be appreciated.

    My very healthy 65 year old bikini wearing aunt went into the hospital for a precancerous polyp removal and reanastomotis of her colon. After 2 days she became so ill she had to have her entire colon removed and an ileostomy was preformed. The only antibiotics she had were the pre and post prophylaxis antibiotics. She is now 80 and still very active and healthy but with a ileostomy pouch for the rest of her life because of C diff.

    Ruth Nedelco says:
    April 11, 2018
    I am a C diff survivor. I had it early in 2012, getting it from Clindamycin for a tooth absyses. Had it 4 months and got rid of it with probiotics along with Metronaidozole (spelling). I then took Probiotic Defense by NOW from a health food store as maintnance which I still take. I also have Acidophilis which I am thinking of taking along with Probiotic Defense as it seems there is more food that will give me very soft stool. I have been staying away from fruit, spicy foods and dairy products, all of which seem to be a No No for a C diff survivor. It seems way too often now that a have too soft stool I hope it is not a return of the ugly monster. I shall go to cdiff foundation Web for more information. I wasn’t aware of this group until reading herein of other persons problems with Cdiff.. I am a healthy and active 87 year old . Last year (2017) I lost my significant other and had to put my dog down because of liver cancer. Lost quite a bit of weight but have gained it back since I have adopted another small and light weight 12 pounder dog. As I recall I lost 30 lbs in that short 4 months that I had C diff.

    I contacted c. diff, most likely, from the antibiotic Clindamycin – one of the worst antibiotics responsible for c. diff. Don’t know why a doctor would prescribe that, especially to a senior. I am now taking Metronadizone which seems to be helping. Am really concerned about this spreading to others, even though I washed my hands after every trip to the bathroom, sometimes 20 per day, but if it was that contagious, wouldn’t more people get it? Spores could live months on dry surfaces? What about wet surfaces?

    I was diagnosed with c diff about a year and a half ago. I was misdiagnosed for 6 months pryor by my gastro guy kept saying it was IBS and for 6 months treating me for that with no results.
    By the time I went to another MD and was finally diagnosed after another 10 test I had a raging case of c diff.
    Several rounds of Vancomycin was needed to relieve my pain. Finally…
    BUT the Vancomycin did kill the C Diff , it did not repair the flora in the gut. I’m still in pain.
    That took 8 months of probiotic of several special types to repair the flora.
    I now consider myself about 80% back to where I was before.
    The trouble is with the IBS being the sickness of the day I think many doctors bypass the obvious and go for the easy way out.
    If I did not go to another MD I think the first guy will still be pushing pills for IBS..
    It is believed that a course of Cipro I took 6 months before the original systons caused my c diff.
    Keep away from antibiotics unless you really need them…

    C-Diff is a horrid and ominous super-bug, but it does not have to be fatal ! The internet will scare yo with statistics of an 83% mortality rate for seniors; (70 and older), that acquire it. Please educate yourself and do your part to help any loved one unfortunate enough to pick up this dreaded bacterial infection. Antibiotics kill the good bacteria and flora in your digestive system , along with the bad. This allows C-Diff to flourish. Replenish the digestive trace 3x daily with probiotic supplements like Florastor (containing: S.Boullardi) and Culturelle (containing: Lactobacillus Acidophilis). These two strains are ideal for keeping it at bay. Also, eat probiotic-rich foods like sauerkraut, kimchi, yogurt and Kefir cheese; (a thick cream cheese style paste, popular in Arab cuisines). These are things you can and must do yourself to keep this insidious infection from rearing its ugly head again once you have already had it and for prevention, too !

    My 91 year old mother was recently in the hospital for 6 weeks due to a UTI immediately followed by CDIF. The doctors were surprised she survived. She was upset with me because I let the doctors treat her. (She has a DNR and is mentally ready to pass on as she is in pain daily due to a pre existing condition). If I hadn’t taken her to the hospital when she got sick, or if I had told the doctors to withhold treatment, what would have happened to her?

    Your blog is very nice and I like it your blog keep sharing with your new article….

    As a wound ostomy nurse for a large hospital, I have contracted c.diff three times in the last two years.

    I am a daily probiotic user and am ultra vigilent about using PPE on positively identied patients. I realize that exposure happens throughout the entire hospital, elevator buttons, telephones, computer keyboards, etc. Almost daily, I witness family members coming out of rooms who are not gowned and gloved, and for selfish reasons, I get angry. I can’t control the actions of family members who refuse to adhere to the policies, and with an increased importance on patient satisfaction and customer service, staff nurses are placed in a difficult position of confronting and educating families about the risks. Our facility owns a UV spore killer, but I am not confident that it is utilized regularly.

    I am seriously contemplating leaving direct patient care and the hospital environment for my own health safety. The idea of this devastates me. I can certainly use full gowned PPE for every patient I see, regardless of their official precaution status, but that effort does seem exhausting. I would appreciate any ideas or insight you have to offer.

    Thank you for sharing your mom’s story. We are very sorry to hear about her illness. We encourage you to consult with an infectious disease specialist about your mom’s illness. If you have additional questions about C. difficile, you can contact us at http://wwwn.cdc.gov/dcs/RequestForm.aspx.

    My Mom is also someone that is struggling with CDIF. She has had it now 3 times, performed the fecal transplant just a little over a 10 days ago and now is starting to show signs of it again. She was in a rehab center but she kept getting it there a few days after she was off of antibiotics for CDIF. She was the. Hospitalized due to it and that’s when we decided to go with transplant. She’s only 70 and can’t seem to get this taken care of. Is there anything that she/we can do to help her out? She gets very so k at her stomach when she has it and stomach pains. She’s already lost almost 50 pounds due to this all. Any help or suggestions would be much appreciated. We are at a loss of words on how to help her!!!

    I had no knowledge about this site and the quantum of work going on in this direction. Really commendable to reiterate the basics of hygiene which we as practioners become careless.
    My best wishes for the knowledge being generated and let this go to many such minds

    CDC guideline “If hands are not visibly soiled, use an alcohol-based hand rub for routinely decontaminating hands…..”
    Why not make washing with soap/antiseptic and water the number one option for hand hygiene in order to wash away transient pathogens that are easily washed away e.g. VRE, MRSA, ESBL’s and C.diff spores. Alcohol does not wash away pathogens and does not kill C. diff spores.
    Alcohol hand agents lead to a 1 to 2 log reduction and that is in question in the following publication; http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1181814/
    Health Care Workers (HCW) can help stop the spread of dangerous transient pathogens (e.g. C. diff) that are not visible on hands by making washing with soap and water their first option.
    Transient pathogens are easily washed away and most times are not visible on HCW’s hands!

    I am so aware of this as I too have had friends pass away from his disease. I tell the younger ones at work all the time to be very careful taking antibiotics for every little thing that comes your way. Although tests to see what your infection is should be done before you go on ANY antibiotic, this is not always done. Causing us to get too much of the wrong antibiotics. Doctors feel helpless sometimes and give antibiotics way to freely. I believe it is because Doctors get tired of hearing the flack- back when they say ” you must let this run its course”. So don’t complain. When someone says, it’s a cold. Believe it could be. Colds last at least 7 days. After 7 days, see a physician. And, be consistent with washing your hands after elimination, or when you have been in public places. Even sanitizers can help! ALWAYS ,Teach your children good hygiene. This is a great topic.Thank you.

    As a Registered Nurse and Infection Preventionist, I cannot stress enough the importance of hand washing to healthcare professionals. Wearing gloves when caring for an individual with Clostridium difficile is not good enough. It’s so very important to perform hand hygiene before and after removing gloves, as the gloves work to create a physical barrier between the environment and the healthcare worker’s hands. Although gloves do provide protection, there is always the possibility of micro-holes. Soap and water after removal of gloves is the way to physically remove the C. diff spores by application of friction while washing and the rinsing of the hands in a running stream of water-using caution to turn off faucets with a clean, dry paper towel. Continued education for healthcare professionals, patients, visitors and the public in general about the importance of good hand hygiene is so very important to help prevent transmission of infections.
    Thank you Nancy for sharing your story. I think it helps others understand the impact of this terrible infection.

    Thank you for explaining this insidious infection, its impact and prevention so clearly. I would be interested in a brochure on the topic, for distribution.

    M. Hendrickson

    Nurses are doing Staying on top of quality issues in critical access hospitals has never been more important. Reporting on them may soon be required. And reimbursement changes—due to health care reform—are affecting everyone. You can’t afford to have falls or infection rate increases affecting your bottom line one Life saving is whole world Life saving but we are not apprising as has to be.

    Generating fear of taking antibiotics is not right approach against prevention.
    Judicious prescribing practice by medical fraternity requires to be instigated amongst
    Medical teachers so as to deeply inculcate that amongst young graduates, by more course hours for this topic.

    My mother is 84 years old and was in good health until she fell and broke her upper arm last September. She ended up being hospitalized because the broken bone necessitated that her shoulder be replaced. She did fine in the hospital but then transferred to a rehab facility where she contracted C. difficile. She has been treated at least 5 times for it in the last 5 months and it has always returned within one week of discontinuing the antibiotics. She is currently on a tapering regimen of vancomycin and we shall see how that works when she finishes her pills.

    One thing that really upsets me is that many providers do not seem to be informed of the facts about C. difficile and my mother has suffered because of that. The latest thing to have happened is that she contracted a UTI during her latest bout of C. difficile and her doctor refused to treat it for fear of the antibiotics exacerbating her C. difficile. I was very concerned that she’d end up with urosepsis due to the untreated UTI and get hospitalized and contract other nosocomial infections, none of which would probably end well. I consulted an infectious diseases doc about this and he said that she could end up very ill and needed to be treated for her UTI. I then had to figure out how to get her a prescription for antibiotics because her doc would not give her one. Fortunately, she had gone to another doctor the day before who prescribed appropriate antibiotics for her UTI and she began taking them. However, her regular doctor called to tell her to stop taking them. I had to tell her to keep taking them and I hated to undermine her faith in her doctor, but I felt she was at great risk to get even a worse illness.

    I know other patients have probably had their care mishandled due to lack of knowledge about this infection from their providers. I am so fearful that her recent treatment will fail again. Two of my friends’ mothers have died from C. difficile infection and I don’t want my mom to join that club. It really does almost seem hopeless.

    I am a C Diff survivor and would like to help as an advocate for reporting systems in all states. During my illness, I learned that the State of Florida does not require hospitals, physicians, etc. to report to anyone, i.e., State Health Department, that a case of C Diff is active in their hospital or patient.

    I could not even get the Hospital Administrator to return my call to inquire if he even knew that I had contracted it while in his hospital.

    Without this tracking system, how can preventative measures be checked and improved? How can hospitals, physicians know that training of staff and disinfection of facilities/equipment is required ASAP.

    I ended up opting for a fecal transplant and I hope that, along with my newfound vigilance, will improve my chances of not being re-infected.

    Please let me know how I can help with making sure reporting and followup is required.

Post a Comment

Your email address will not be published.

All comments posted become a part of the public domain, and users are responsible for their comments. This is a moderated site and your comments will be reviewed before they are posted. Read more about our comment policy »

TOP