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.

Nancy C. Caralla, Founder & Executive Director of the C Diff Foundation
Nancy C. Caralla is a three time C. difficile infection survivor who has 23 years’ experience in the nursing profession blended with over 25 years experience in international construction management. Over the past two years, Nancy in partnership with Foundation members, has focused on raising C. difficile awareness through education, and advocating for C. difficile infection prevention, treatments, and environmental safety worldwide. The C Diff Foundation is a non-profit organization and takes great pride in their volunteers, chairpersons, and committees. Their mission reaches across the nation and is presently in twenty ststes and growing. We are all working together to achieve a mutual goal: a reduction in newly diagnosed C. difficile infections worldwide.

Posted on by CDC's Safe Healthcare Blog

104 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 ».

    My daughter had gallbladder removal surgery where they gave her a antibiotic before the surgery. She developed severe vomiting and nausea and all I kept hearing from numerous trips to ER’s was this was normal. IT WASNT. Our GI ordered test and was found it was C.Diff. We are on heavy antibiotics and our praying for relief soon. Its horrible!

    My C. diff was caused by taking PRILOSEC, not antibiotics like everyone else. It reduced my stomach acid so much that the good bacteria was killed off. It’s extremely rare but very real! I was hospitalized twice in less than a month, 6 days in ICU and nearly died from sepsis. It took over 6 months to recover, but i am fine now. I had taken 1 Prilosec a day for 3 weeks and had no other contributing factors, so beware of OTC acid reducing meds!

    In late Dec. 2016 I began having diarrhea up to 12 times a day and abdominal pain so severe that I couldn’t stand upright. I was admitted to the hospital for 4 days and sent home on vancomycin. Less than a month later I suddenly passed out cold on the bathroom floor. I had no diarrhea or abdominal pain, so we were quite surprised to find out the C. diff had returned with a vengeance! My colon was ready to explode, I had sepsis and spent 6 days in the ICU, 11 total in the hospital. Now for the shocking part-this was caused from taking PRILOSEC! Apparently it lowered my stomach acid to the point that the bad bacteria took over. I had been taking 1 pill a day for 3 weeks and nearly died. OTC meds are still meds and not to be taken lightly…

    Hello…I am 22 years old and a survivor of c-diff. My road to recovery has not been great either. Ever since I was a kid, I struggled with IBS (Irritable bowel syndrome) everything I ate, always came out minutes later with diarrhea. As I got older I realized I was progressively getting worse and was later diagnosed with SIBO (small intestinal bacterial overgrowth). SIBO is a hard disease to live with because it takes over my entire life. I really cannot eat much of anything at all. I also suffer from an incredibly weak immune system and am constantly taking antibiotics for flu, strep, ear infections.. etc. In April 2020 I began to have uncontrollable diarrhea and shooting pains through my stomach which were unbearable. My situation is rather strange because at first I really did not think anything was wrong since I already suffer from a very weak stomach. After two weeks I finally was able to call my GI who I basically had to force to order me a test. A week later I got the call… I had c diff. I had never felt so low and disgusted with myself. Luckily, after two weeks of Flagyl I felt better. I have been better for about two months now. I have severe anxiety and fear that c diff will return and I will feel the same pain and darkness that I did feel. I am so young and I am always saying no to my friends and family to go out because of my constant problems. The road to recovery post c diff has been so hard for me and I still feel symptoms such as burning after a bowel movement.

    I’m a 26 year old woman and started showing symptoms back in February, thinking it was just IBS (not diagnosed, but my mother is and has flare-ups) – after leaving work multiple days for a couple of weeks due to the bathroom situation I finally went to the clinic through work, thinking I had the flu. It had gotten to the point where I was throwing up and my stomach pain was unbearable, with uncomfortable and nauseating bowel movements, despite not being diarrhea as they initially were; they did a test for it and turned out I was tested positive, which shocked them and puzzled them because I was not on any antibiotics or medication since years ago, which is usually what causes it for others. I did one round of Vancomycin and it came in waves, but I mostly felt better. The clinic insisted I do not need to go back in to re-test, as it will just “go away” with treatment. A few weeks passed and it became unbearable again, so I called – after practically begging to do another stool test they allowed me to come in to grab one to bring home, as well as took blood. Sure enough – positive again… Did a second, more vigorous round of Vancomycin and they stated if that doesn’t work then the next medication would be way more pricy – which, yikes, the Vancomycin was NOT cheap, especially the 90 pills for the second treatment. I have two pills left and the last couple of days have been unbearable again – I know my body and have a feeling this bad boy never got better… Now what? My boss kept telling my team who was worried about me that it was no big deal, just a stomach bug, and the clinic was insistent that I didn’t even need to be tested again in the first place. I am beginning to feel like I’m crazy. My fiance is insistent that I may have some kind of colitis based on the symptoms and is even frustrated himself that the doctor didn’t say or do anything to test for that, unless they did and we just don’t know. I feel helpless and with COVID-19 I’m afraid to even bring it up again.

    Please reply ASAP with advice. My husband who is 36 just got out hospital being treated for cdiff and his GI told him to begin taking the antibiotic DIFICID along WITH the VANCOMYCIN he has been taking ( was also given Flagyl iv or whatever in hospital) He is now in extreme pain and I want to know why on earth his Dr would have him take BOTH antibiotics at the same time ??? He says 8 days to go.. is this killing him? Why is he in extreme pain now? Why would his doctor ask him to begin another antibiotic at the same time? I can’t find any info anywhere re uc patients being prescribed vancomycin and dificid together. Please advise. Thank you

    Hello, we are sorry your husband is experiencing these health issues. CDC cannot give personal medical advice. We recommend you consult your healthcare provider who can determine the best treatment for you. If you feel you are not getting a reasonable response, ID docs (along with GIs) are another specialty area with significant experience managing C.diff. We hope your husband feels better soon.

    This is my second bout of C Diff. I got my first round in July 2019. I took an antibiotic for an infected finger. I went through two courses of Vanco (July and then at the end of August) and then Difcid in October. I was fine until end of January 2020 when my husband got Cdiff and I was helping with his care. Did not know he had it and then it started all over again. I did two courses of Vanco, regular then tapered. I spoke with Specialist in Hershey who said I was a candidate for fecal transplant but due to deaths, the FDA has clamped down on this and it will now cost $$$ out of pocket. My regular GI doctor will not touch me again for this, said I have to got to the doctor because I did not want to do fecal transplant nor can I tolerate a colonoscopy due to the diarrhea. Now when I care for my hubby especially with bowel movements, I put on PPE. The specialists said that a tapered dose of Dificid has been promising. So, when I talk to him this week, I will ask him about this. I am changing my diet because I know this will spur this on. I am eating yogurt, taking Florastor and FlorastorPre, Benefiber, drinking Kombucha tea, eating sauerkraut, and more. It drives me crazy.

    Does benefiber help with cdiff. I have been doctoring fora year and have tested positive twice. I have been on different medicines. My gi doctor just told me to start taking benefiber.

    Benefiber contains wheat dextrin, which is a soluble (meaning it dissolves in water) form of dietary fiber. Dietary fibers are carbohydrates (nutrients) that our intestines do not absorb but which the microbiota in our large intestine can use as food, helping them to grow and multiply. The type of bacteria that are benefitted tend to be those that form a more ‘healthy’ microbiota (or at least are commonly found in healthy persons). Dietary fiber is sometimes called a ‘prebiotic’ because it can work in concert with a ‘probiotic’ (live microbial supplements). There are several experimental studies in mice and other disease models (not human studies) that suggest such dietary fiber can prevent C. diff infection or decrease severity. However, no dietary supplements are approved by FDA expressly for the purpose of preventing C. diff infection. It is generally accepted that Americans do not get enough dietary fiber and improving intake through diet, and possibly supplements, is good for overall health. While we can’t say that it will definitely improve or prevent C. diff infection, there is no evidence it would hurt.

    My sweet, gentle, kind mother just passed away 3 days ago at the age of 83 on April 23,2020 from CDIF.
    She has been in and out of hospital 4 times since last September with it. Finally had the fecal transplant beginning of March but it was done too late. If there is anything I can tell people it’s to stay away from antibiotics unless it’s a case of life or death and if you do get cdif, get the fecal transplant as soon as possible. If the doctors had done this earlier on, I have no doubt mom would still be here with me. Her specialist called me the morning she passed to express his concern and sympathy and even confessed they might have “dropped the ball and should have got it done sooner ” I can’t even express the sorrow I am feeling right now as well as the anger I have towards this evil monster called cdif.

    I was sick for nearly 6 months in 2017, was put on multiple rounds of antibiotics for it, and trying to raise 3 boys as a single mom. I hadn’t heard of CDIFF before this happened. It wasnt until I added probiotics, specifically S. Boulardii, that it finally stopped reoccurring. I am still battling the negative effects Cdiff had on my body…aches, less energy, etc..and rebuilding my immune system. So thankful for those probiotics..I can honestly say they might have saved my life. Just wanted to share and so thankful for blogs like this that make more awareness about CDIFF. It took the doctors nearly two months to figure out what was wrong.

    Constant uncontrollable diarrhea, ruined two brand new mattresses. Can’t even count the amount of clothes I’ve had to rebuy , washing even with bleach doesn’t clean the clothes or bedding ,everything I own is permanently stained with that yellow/orange bowel acid stopped eating because even water would stimulate my bowels and trigger the diarrhea, I’m on 4th course of vancomycin and still it’s not working. The embarrassment and helplessness is killing me, I don’t even see my only child anymore because I can’t control my bowels, they release at anytime and I have no control whatsoever. Adult diapers are like covering your butt in Kleenex, they cannot contain what is released, humiliating . Bed mats don’t work either. I’ve layered Hospital Chucks for nights and still wake up to being covered in fecal matter and bedding destroyed. There has to be something we are not seeing in this disease. Would Chrone’s disease or IBS drugs work to control the symptoms? I’m asking my doctor tomorrow.

    Has anyone looked into the fact that IVIG may cure Cdiff? Was reading on the National Institute of Health, many articles on this. It would be a shame if all of us been taking the meds only to find out IVIG can CURE it! FMT’S sometimes fail from what I have been reading on blogs.

    I had c diff 10 years ago, I was 35 at the time. Contracted it after taking antibiotics for a tooth infection and spending a night at the ER a couple weeks after that because of a migraine. Long story short, I took two rounds of flagyl which appeared to stop it but a week later it came back. I went to the ER where I was given a different antibiotic which I was later told was the wrong one to give for this disease. It made things uncontrollable. I was then prescribed vancomycin to which I was allergic. It had been about two-three months by then and I was at the end of my wits. All I could eat was rice with some Omega 3 oil and some bread. I was taking tons of probiotics as well. Finally my doctor gave me cholestyramine which binds with the bad bacteria and that eventually stopped the infection. I think strong antibiotics made things much worse. My blood work was generally good, so I was able to defeat the infection. I haven’t had another relapse but I’m careful with what I eat. Before the infection I had occasional digestive issues which disappeared for a while after this experience of forceful gut cleansing.

    I got c diff from an antibiotic prescribed for a tooth infection like so many other people. I did the round of vancomycin and now about two weeks later it has returned. This is such a depressing thing to have and it totally zaps your energy. And I’m very angry because no one in healthcare seems to understand the severity of c diff. I want to sue the doctor who prescribed the antibiotic that caused this. He never mentioned anything about it possibly causing c diff or I would of asked for a different antibiotic. All he said was it sometimes can cause diarrhea but I never dreamed it could cause something like this. Are there any class action lawsuits against pharmaceutical companies for antibiotics that are known to cause c diff? All I can think about are the poor elderly people in nursing homes with c diff who can’t even get to the bathroom on their own

    I’m especially responding to S. I wish I could pm or email you but I can’t find a way. My heart goes out to you suffering for so long. Also to everyone on here who is suffering with this as its a terrible way to live. I also have sruggled with c diff but for many years starting in my eary 20’s. I had difficulty getting a dr to listen. I kept getting told it was just IBS eat better and calm down. I felt like they thought I was just some hysterical woman. No help so got weaker and weaker. Finally a surgeon I went to knew immediately what was wrong. He did a scope right then in his office and diagnosed me with pseudomembranous colitis and explained it to me. I was treated with Flagyl and after months of struggling, in a week I was feeling much better. I found out the hard way that I get it everytime I take an antibiotic. Yet I had a difficult time getting a dr to believe me and treat me for it.
    Dec. 2019 I became ill with a high fever and my dr felt I needed antibiotics. They did help my bronchitis but now I’m back there again. This time I failed to get better after 3 rounds of Flagyl. I’d temporarily start to get better but within 3-5 days of ending Flagyl it returned with a vengence. I’m now on vancomycin and starting to feel better. The stomach pain can be unbearable. Being a massage therapist I prefer using natural ways to care for myself but found that I sometimes need something stronger. I want to encourage you to please see a regular dr. for treatment. I let it go to long this time and its much worse.
    I don’t know if anyone else on here has found that processed foods make it worse. I have to make sure not to eat foods with preservatives, msg, etc or I’m in trouble. I buy only meats that I am sure have not been injected with juices and additives. I’ve found there are more things i can eat than I thought. There is even non dairy pepperoni pizza made with unprocessed meat, nut cheeses, yummy non dairy cheesecakes etc. I shop at a natural grocery store. I’m learning to grow some of my vegetables then make a lot of my own foods and freeze ahead.
    It’s difficult to eat out because of all the hidden msg, chemicals and preservatives. I’ve found that most restaurants are very kind to check items for you. I order plain foods without seasoning and soft vegetables. Salad, raw fruits and vegetables and dairy are killers for me. They all make me sick. But I’m getting it narrowed down now. I’m told I may never have totally recovered from my 1st case. It destroys your life. I’ve had to wear adult diapers during a flair up to keep from soiling my bed at night and if I had to go in public which was nearly impossible. I ruined underwear, sheets and towels using bleach and hot water trying to kill it.
    I made it worse by trying to stop it with an antidiarrheal as I was feeling desperate to get out. I’ve lived on Gatorade, Pedialyte, baby food and rice but still lost a lot of weight.
    I finally have a primary dr who understands and is helping me after suffering for years. After 3 days now on vancomycin, I’m finally starting to feeling better. I was told I may have to take it a long time to recover.
    Hang in there and keep searching there is someone who will finally believe you and help. Please go to the ER if you are getting dehydrated.
    The good news is, it will be fun eating to gain my weight back. In a healthy way of course. I too wish we were able to interact with each other for support. At least we can post here. I’m thankful for that. My thoughts are with all of you.

    I have had c-different 4 times once from antibiotics from very greedy dentist,the 3 more times from my GI doctors,all with. In a 3 to 4 month period,was interviewed by a university for fical treatment,I was told by research Doctor I was beyond that help or could they beleave I was still alive,I had view in horror to see sheets my intestine, complete in translucent redish a ordinary let’s over an over and over, I am in my tenth year suffering everyday of y life for hours every morning,The medical feild has failed me again this past year with two more antibiotics that nearly killed me again,I suffer more now for that,nobody can begin to understand my mental and physical pain I have, I am a fighter all of my life I am 65 and I feel very tired my mind and body are not me anymore.

    I am 47 years old…I was prescribed 2 rounds of Amoxicillin for a bad tooth and that started my long battle with C-diff. I have been hospitalized 2 times. I have had this four times, or did I ever really get rid of it? In November 2019 I was very lucky to have been able to get the Fecal Transplant. It totally changed my life for the better. This bacteria is the worst thing I have ever fought in my entire life. There is hope with getting the transplant done.

    I went in for a Lumpectomy and Sentinel Node Dissection for breast cancer and came out with C Diff. Four days after surgery (with antibiotics) I came down with severe diarrhea and vomiting and EXTREME pain. Within hours it was all blood, no stool. Husband rushed me to the ER where I was diagnosed. They put me on Vancomycin for 10 days and I thought that would take care of it. Three weeks after the initial DX I was back in the ER because I thought it relapsed. They did a test and said it was the C diff again (found out later it was only positive for the antigen, not the A and B Toxins). This time the dose was doubled and extended for 14 days. Still no improvement, I was referred to a gastro doc. He took me off the vanco and told me to continue the probiotics twice a day. It has been 33 days so far and nothing has changed. Nobody can figure out why I’m not better. I’m sure I am not absorbing any nutrients whatsoever. I’m also supposed to be starting radiation for my cancer, but not sure if they will even start it with this going on. Honestly, reading these stories is not making me feel very confident. Even before I came to this site and read others stories I told my husband that I feel like this is it, I’m going to be like this forever. At this point I feel like I need to start thinking about leaving my job with the postal service, but then we loose our health insurance.

    My 5 year old was just diagnosed with C. Diff.
    She was on antibiotics for Strep throat a few weeks ago. 5 days ago she started throwing up and having diarrhea. A day later developed almost 103 fever. Took her back to the doctors and they did a stool sample. So far 2 test showed positive for rotavirus and C. diff. We had to take her to the ER this weekend because she was dehydrated. I am so nervous. Any advise would be great.

    Anyone who has experienced c-diff knows that the smell is very distinct. My question is after having the FMT how long does it take for the c-diff smell to go away?

    I got c diff first time about 15 years ago after a round of antibiotics. March 2019 I started having mucus and blood in stools. I have a wonderful GI who did stool testing. Negative for c diff. Then the bloody diarrhea got worse along with severe pain in abdomen. Gi re tested me. I was positive for c diff (i had not taken any antibiotics) put on vancomycin for 10 days. Two days after I stopped the meds my heart rate woke me up at 164 bpm. Off to the Er. Severe bleeding and colitis. Admitted for 4 days, put on Xifaxin and Flagyl. Follow up with infectious disease dr. He put me on a vancomycin taper. Stopped that in August 2019. Six weeks later I tested positive again. Put back on vancomycin and Ive been on it since then. As i write this Im drinking the prep to prepare for an FMT tomorrow. My GI has done thousands of them with good results. Both infectious and GI feel since they dont know why I get c diff that FMT is hope. Even the case worker through my health insurance told me after my May 2019 hospital stay to do the FMT. Am I nervous about the FMT? Yes I am. I trust my Gi and infectious disease Dr. i hope it helps so that I can start living my life again.

    I have C-Diff from antibiotic from infected tooth.

    First round of metronidazole (Flagyl) started to work & then everything turned backwards.
    Results are worse than before.

    Went to fill Vancomycin & cost was $759 after supplementary ins. (on Medicare).

    Instead, will a 2nd round of Flagyl be effective?

    Hi. First off I wish there were a reply button for each comment.
    I started feeling unwell in September heavy change in energy and by December I couldn’t stand or I’d have an involuntary vowel movement. I was diagnosed with C Diff on my birthday after a dr prescribed me clindamycin told me I was allergic after a rash then had me go on augmentin weeks later and that’s how it all got worse. I thought it was my iud I had no clue what was wrong with me so I had to have another antibiotic inserted for that removal. It reoccurred and now I’m just exhausted. I find that a probiotic a day and colloidal silver plus really helps my stomach but what can I do with this fatigue. I never believed fatigue was real. How can I explain this to people ? They think I have a cold. Everything tastes bad and I just want to lay down all day, I used to be the most active healthy person. Will I ever be again ?

    In 2015 after a surgery I was given an antibiotic and within 3 or 4 days I was running 103 and going up fever , could not whole my head up, throwing up, diarrhea, pain pain pain. My boyfriend took me to the ER & I was admitted. I had never at that time heard of C-Diff or just did not know the history on it. IV’s were started and I could only be given an oral antibiotic. For a week I was in hospital. It has been 5 years and it seems I continue to have problems with food, bloating, and pain ever since this horrible experience. If I don’t eat and just drink not as much of issue. Is this something that will always affect us.

    I had C diff back in January and took Vancomycin for it. I was finally feeling better, and 5 weeks after being treated, I got c diff again. Does anyone know if this could be because it was not fully treated last month? There were a couple days when I only took 3 vancomycin pills instead of 4, so I wasn’t as consistent as I should be. I just want to be feeling better. Started Vancomycin again, and I really hope it goes away this time. I don’t want to have a fecal transplant. I am 25 and it is really affecting my social life and work life. I am constantly bloated and gas pains now. Was wondering if other people experience these symptoms as well. Has anyone been completely better after being treated a second time for c diff and for a longer period?

    In 2018 I had just started my first year of university. Not even a month went by when suddenly I woke up one morning with the worst pain I have ever felt in my entire life, I knew something was wrong when I began to vomit. I went to the hospital, they told me I was just constipated and sent me home. The next day I went to a different hospital and they told me the same thing, the next day I celebrated my 18th birthday projectile vomiting for 24h and enduring pain which I have been told is worse than giving birth. The next day I went back to the hospital and that was when they realized I had a bowel obstruction. 16 days later I had a gastrointestinal surgery where they removed 3 feet of my small intestine. As soon as I was able to go to the bathroom a week after my surgery, it was awful. A year later in 2019, it was still awful. I did so many tests, visited so many doctors and they all figured “well we removed so much of your intestine its no wonder you go to the bathroom over 10 times a day and is all water” It is February of 2020 now and I have been living with C-diff for over a year. A month ago I was diagnosed with C-diff from a naturopath, because of my bowel surgery. She has me on so many probiotics and supplements as well as a gluten and sugar-free diet, she says I will have to be on the medication and the diet for another YEAR, and even so she doesn’t know if it will work/return after all of the hard work. It is horrible I am contemplating seeing a regular doctor because I can’t afford to lose another year of my life to c-diff. I am missing out on what should be the best years of my life. I am turning 20 this year and I have been depressed since I had my bowel obstruction when I was 18. I have missed out on so much. I don’t leave the house anymore, every time I leave I fear that I will have to go to the bathroom. I haven’t made any friends at school, my friends at home want to go out and party and I can’t. C-diff has ruined my life, nobody in my life understands the severity of this disease, they think I am antisocial when I have been struggling so much. I’m in pain every day, it is a miracle I am still in school. Every day I am miserable. I don’t eat much variety to begin with, but now that I have to eat sugar and gluten-free I have nothing to eat. Everyone around me is enjoying life, making the most out of their university experience and I spend every day in pain. I just want to be free I don’t know what to do anymore. If you are reading this and you have c-diff and want to talk further PLEASE email me. I can’t find anywhere where people with c-diff can have a conversation with one another and I can’t even find much about it on the internet. I wish all of you good luck on your journey, and I hope we can all get through this terrible time <3

    To everyone currently suffering with c. diff, please consider the FMT – it is the best way to repopulate the good bacteria killed off by antibiotics. My father almost died as a result of c. diff infection in 2016, and he was finally able to get over it after two rounds of Dificid and a pulse taper. He wasn’t able to get the FMT procedure because he only had one positive stool test – he was told there is no testing to see if you’re “cured” because of too many false positive results – that’s why he only had one positive test after suffering from c. diff, flagyl, vancomycin and dificid for almost a year. He was recently treated for a UTI he likely didn’t have, and I fear the c. diff has returned. I would do anything to get him access to an FMT today and forget all about c. diff. Good luck to you all, whatever treatment you receive 🙂

    C Diff is not good, I am 75 and had a knee replacement Nov 25 2019 I have been onVancomycin hydrochloride for over 2 months, and will be on them until end of March. Still not well . Any help out there ,l need it thank you

    Don’t know how old this is, but I actually am a C Diff survivor too, just recovering from its after effects, but some won’t go away. I got C diff from the antibiotics I had after a severe infection in my mouth that I got after my wisdom teeth were removed. I’m a teen and I have missed months of school and I have had to take so much medication. My C diff was severe and I’m always living with stomach cramps. ): I can barely eat without being sick now and I’m afraid of the long term effects. I have had to go to the E.R because of this and a hospital lab. I’m so glad there are advocates fighting this because I know, along with so many how terrible it is. I got it in November 2019 and now it’s February 2020 and I am still sick. I am not looking for sympathy by the way, I just wanted to share because I know there are supportive communities out there and people who can relate to me.

    I knew about c diff since my mother became infected while recuperating from surgery in a long-term care facility years ago. She was sent to the hospital and stayed for almost a month. I never thought I would become infected.
    I was hospitalized in May, 2019, and was put on antibiotics for two weeks. I was put on Clindamycin for five days in August after dental implant surgery by a periodontist. The implant became infected over time, and I was put on Clindamycin after oral surgery by an endodontist in early November. I think this killed off so much of the good bacteria in my intestinal system that c diff bacteria took over, and I became ill.
    I started to get low-key generalized abdominal and lower abdominal pain along with nausea around Thanksgiving which increased in December. The diarrhea and fever began on New Year’s Day, and I thought I had a nasty stomach bug. By January 9th, I had severe upper and lower abdominal pain, fever, overwhelming nausea, no appetite, blood in my diarrhea, was severely dehydrated, and had lost ten pounds. I was transferred by ambulance to the hospital from my primary care doctor’s office.
    Then everything came to a standstill. After two hours of misery and questions from multiple staff and doctors, I was placed on an IV. A few hours later a CT scan was done and I was admitted overnight for observation. My diagnosis was enterocolitis and I was discharged home with instructions to follow a clear liquid, bland diet, and to follow up with my PCP and gastroenterologist. It’s worth noting that a stool sample was not taken and no one observed c diff protocol. I was diagnosed with c diff a week later and put on Flagyl for 14 days. The preferred antibiotic was Vancomycin, but I go into anaphylactic shock if I take it. I was pooping blood only by this time and was exhausted. I wasn’t given any information on what to do at home other than drink clear liquids, eat a bland diet, take Flagyl, call the GI office if I had symptoms after finishing Flagyl, and follow up in four weeks.
    I Googled c diff and realized the nightmare was getting worse. Bleach kills the spores, so I’ve been cleaning the entire bathroom with bleach daily, and am using sporacidal wipes on the bathroom sink, mirror, toilet, kitchen sink and appliances multiple times per day. The skin on both of my hands is red, irritated, and cracked from washing them so often. My bed linens and all of my clothes have been bleached. I’ve also learned that there’s not a way to get the spores out of the carpet other than to hire a decontamination company, and that vacuums house the spores. I’ve had to make peace with this, though, since it’s prohibitively expensive to replace them.
    All of this being said, this is where I am today. I’m still having lower abdominal pain, diarrhea without blood, and am waiting on the results of a new stool sample test; however, I have a really really clean bathroom and kitchen!
    Thank you for reading this long-worded post. Through my experience I hope to help anyone who’s going through this. What helped me the most was learning as much as I could about c diff to fight it at home. I’ve also learned that I need to press any doctor for more information before antibiotics are prescribed.

    The hell and darkness CDiff has caused is unexplainable unless you’ve suffered it. It’s devastating physically and mentally I’m a shell of who I was.
    15 months ago I was diagnosed by a rude awful insta are dr who made me feel like dirt he said there’s no way you have CDiff I had t ever heard of it but was insisting I need a stool test something was wrong. I got a call the next day of CDiff. I we y that day to my primary care dr who was very grave I thought ??? What’s the big deal won’t I get better. I then took over the next 4 months flagyl made me sooo sick then vancomycin 5 rounds taper then it came back then difícil for a 2 rounds. This whole time I was throwing up blood pooping blood absolutely in horrific pain. That stomach pain and swelling is unbelievable. My personality completely changed I felt overwhelming darkness I isolated myself struggled to keep from killing myself felt I was a burden worthless. I lost weight my hair started to fall out. I was hospitalized 3 times for weeks. I’d never felt so sick or in pain (( even from leukemia, kidney stones, appendix rupture, auto accident, hysterectomy, gallstones , Pancreatitis, death of loved ones nothing comes close to the never ending hell of this horrid infection.
    Then came the transplant in Mar it sort of helped with bloody watery stools or lack of stools but never did the pain in stomach stop or have a solid stool. My mind is gone I can’t focus I can’t I can’t sleep. My stools are floaty mushy I have completely changed my diet hopefully it will help but if I go more than 12 hours not eating I can bright orange poop liquid and worse tummy pain. I just called dr to request stool sample he said last year west need another transplant. The first transplant was so depressing I had reaction went mad escaped hospital fought police they thought i was an addict but my dr stepped in said no this isn’t her this is the operation and meds. I was on suicide watch humiliation and over gained weight. I’m
    Just feeling there is no hope for a cure or bring me again with no pain. Always nervous anxious. Why with 14,000 deaths a year are we not talking about this ?? 🙁

    Hi Mel, we are concerned for your safety and would like to help you find someone to talk to. The trained counselors at the National Suicide Prevention Lifeline are available 24/7 by calling 1-800-273-TALK (8255). The call is free and confidential. To learn more about the Lifeline or to chat with someone who can help, visit http://www.suicidepreventionlifeline.org. We hope that you can remain safe and continue to reach out. Please do not do anything to hurt yourself. Please talk to someone.

    C.diff has taken over my life. Im in pain i have had 3 rounds of vancomycin. Been in hospital, seen my primary physician not telling how many times. E.R., visits. I have 2 jobs im missing out on life i just want fixed…

    I was diagnosed with Small Bowel C. Diff in November 2019. I went to the hospital via ambulance due to uncontrollable and explosive vomit. It was also very dark, almost black. By the time I was admitted, I was showing signs of septic shock (low blood pressure, skyrocketing pulse). By the time the doctors figured out I was in septic shock, my heart was at 5% function and my kidneys were failing. They had to put me on a breathing machine, and 24/7 dialysis.

    I also developed compartmental syndrome, so my abdomen needed to be opened up and drained for 5 days.

    I am told small bowel c. diff is very rare as there have only been less than 100 cases ever reported. With little to no treatment options, the doctors felt doing a fecal transplant would be my only avenue (treat the same as large bowel c. diff). So, after 2 weeks of aggressive treatment with antibiotics, they performed a fecal transplant. I had much better results after the fecal transplant procedure. I stopped getting sick and I stopped vomiting as much.

    I also ended up with an ileostomy from this adventure which I am still getting used to. I am unsure if it is permanent or will be reversed in the next few months. I can tell you this, I am very hesitant to ever return to the hospital for a surgery of this caliber in fear that the c. diff returns.

    I am now anemic and need iron infusions, and also I still cannot absorb nutrition, so I am on home healthcare for fluids and nutrition through an IV. After my hospital stay, it has taken 6 weeks for the metal taste in my mouth to diminish. I am thankful that it has, as I thought I may never enjoy food again.

    The recovery has been extremely slow, but I am told that is to be expected.

    I have cdiff, went thru 10 days and 14 days of vancomycin, now awaiting 3rd stool sample test (I’m quite sure its back again). Dr. Wanting me to do FMT, which after reading lots and lots of thingson internet, am very leary of the “unknown” possibilities. Im confident it will cure the cdiff, but will I become obese, depressed, only to name a couple of things I read about.
    But compared to alternative options of more antibiotics (a differe t one, or a tapering long term method), Im about ready to give FMT a try. Has anyone had long term success with it? Or anybad side effects? And yes I agree with everyone…dont want to go to work, mainly afraid of getting others sick. Wont go out dancing as I used to do weekly due to all of the hand to hand contact. Wont go se my parents in a nursing home, or visit my friend going thru chemo. Finding out how frail my stomach is, and that i need to watch what I eat. No having a drink with friends for a while I guess. Good luck to all!

    I am 28 years old and currently dealing with this nasty infection !!! 8 weeks ago Nov 2019 I had an infected wisdom tooth so I was put on ABs- half way through treatment I developed bad diahhorrea and ever since I have had nothing but trouble with my stomach..
    I was diagnosed by a positive stool sample Just before Christmas 2019 after seeing drs and ending up in ER numerous times… only to be told things like your constipated, inflamed appendix, gastritis, stripped stomach lining, all in my head ect.
    It was only because I pushed for more testing saying something is not right in my body and to test my stool that it was found.
    10 days of Flagyl ABs, and after only 3 days off it- stomach started to blow up and I have become constipated and struggling to pass anything!! Dr said try gluten free and dairy free diet and obviously not helping and I am back to square one… this infection is keeping me up of a night time in constant pain, ruining my marriage and my relationship with my children!!! I just want to get better…
    I know I am not alone but seems like Drs aren’t too worried that such an infection that can cause death is just passed off as you’ll get better soon ;(

    Just read Harvard Medical no longer give anitbotics to treat this they do the fecal implant with 80 to 90 percent success. I’m on my second round of antibiotics and this last time was worse. I plan on begging my doctor who I know does this. Why waste so much time and my health to not do what is working and proven. I have been on probiotics eating food high in probiotics and still not well. Even trying sound healing frequencies. . It has come back again to no avail of everything thing . Right now I am trying CBD oil as it has shown to have success in killing the bug. Also listen to healing frequencies. But seems the fecal implant is the best proven answer.

    Hello, I’m Aly. I just found this page while searching for answers to my endless questions. It’s really comforting to see that I’m not the only 20 year old that has this. I think that after this whole experience, nothing else could ever be more embarrassing. I am a server at a restaurant, and this past year(from Dec2018 – June 2019) I had strep twice and the flu once. All of these times I was on antibiotics, and wasn’t taking any probiotics. My stomach hurt for months, but I thought I was just being a hypochondriac. Then in November 2019 it got really bad. I started to feel like I was actually dying. I felt so weak and never wanted to eat because everything made me feel sick. Then the stomach pains got worse, so I went to the Dr., did all the tests, and they came back positive for cdiff. My Dr. called me on her personal number from her vacation 2 days after Christmas because she said I needed to start antibiotics right away. So I took metronidazole for 10 days, and it didnt go away. But the Doctors didnt care. I was so stressed out because I read all about this problem and it seemed to serious when my doctor called me the first time, but now I couldn’t even get ahold of the doctors office to make an appointment. The test results finally came back saying that I still had it(like I knew I did) and now as of January 18th, 2020, I am on my second round of antibiotics. This time it is 14 days of Vancomycin. I had a gastro appointment yesterday and the doctor answered alot of my questions, but it seemed to me that this problem is not well known. I also learned that if this doesn’t work, their is a fecal transplant….which theres no way. No way. This whole thing has just been horrible. My friends think I just dont want to go out with them, my boyfriend thinks I dont love him anymore, and my family keeps making fun of me and I laugh, but its actually so embarrassing. I still feel so exhausted all the time. I am sorry for this long rant, but maybe someone else will come to this page and relate to this. I also just needed to get this off my chest. Thanks for reading. Praying for you all through this horrible condition.

    I am on my 5th time having C-Diff. Got it while taking Augmentum and Levaquin for pneumonia back in July 2019. This is absolutely horrible. Been on the entire regiment of Vancomycin 3 times and 1 round of Dificid. Completely changed my diet. My next step is a fecal transplant. There is no other option ……tired of feeling like this every time I turn around.

    4th time for me since 2015…this time is rougher. I get this every time I take antibiotics. I almost refuse to take them but doctors insist when flu turns into pneumonia:(
    Dr. Even gave me Vanco to take in conjunction but still got it!
    I’m on week 3 of Vanco and now there’s a horrible ammonia like smell to my body. I stay very clean so I don’t know if this is some new kind of reaction to this medication or what! I know my doctors office, even hospital treats me like I’m a leper when I’m there. I feel like the rest right now, alone and scared and depressed. I am on FMLA from teaching and want to go back but can’t. I’m sick of the same foods over and over…can’t handle tea or coffee or much of anything I enjoy.
    I’m sorry we’re all suffering but glad to have someone to talk to who understands.

    I am a cdiff survivor! Tested positive after taking Clyndomyacin for dental work two years ago exactly , this infection gave me paralyzing anxiety…Insomnia, and truly destroyed my life. After seeing (exhausting) my doctor, GI doctor, therapist, psychologist, Gynecologist, eventually rheumatologist, I finally healed my body and mind. I am young, now 36, almost got divorced, scared my children, was relieved from my teaching job temporarily, and was completely alone. I was thankful for these feeds, greatly and wanted desperately to meet someone also recovering. Here’s what I know now, to those looking for support, you’re okay! You’re not going to die, you’re scared and that is a symptom. You will be fine in time, be patient….time heals all wounds, even cdiff.

    Yes, I feel the same way on the 2nd round of antibiotics and I feel very isolated and paranoid . I also can’t do social events worried that I can make things worse . I also feel very alone and scared.

    July 2019, in I.C.U., for this C Diff. ( first week in July & last week ). Been hospitalized, twice, since then. I’m, truly, frightened by these, life threatening, spores . One of the meds I had was Cipro. I BLEW up like a Pillsburry Doe Girl. Back into I.C.U. I went. Im petrified to touch anything (regardless of good hygiene ), or be around others; Family, Children, Babies, etc. – for their safety sake. Very sad ,and paranoid. Tessy 🙁

    My name is Mare and like I posted before on the c diff this is now my 4th bout with this. I went to a new gastro doctor and he was frank with me and said, it is only considered an infection, no big deal…… Please somebody tell me what’s wrong with these doctors, no big deal when you can die from it, he said you can die from heart problems.
    I got this again the same time of year, so these doctors consider this nothing and just go and die and don’t worry about infecting family members, if this is you way to die in this life just accept it. I just finished Vancomycin from Sept 2019 to Nov. 30, 2019, now in Dec 24,2019 got c diff again and he said I’ve never done fecal transplant and would have to have my fellow doctor help me, no way, sorry I won’t do it. He even told me the hospitals don’t consider this an emergency either, and as all my fellow c diff suffers know this is horrible. Unless these hospitals and doctors recognize what a horrible sickness caused by THEM, nothing is going to be done, and we just die off the planet thanks to doctors who don’t care, and gave this to us.

    Hi my name is Shelby, I also have c diff and on the second round of antibiotics. I’m 20 years old and I think the youngest from what I read. I first want to say I feel really really relieved that I’m not the only one suffering from depression from this illness. It’s exhausting, draining, and makes me feel embarrassed most of the time. I feel left out at my age especially, my friends invite me every weekend asking if I’m “ better” or able to grab sushi and drinks or go to a party. I don’t want to risk anything I’m stuck in a confined food zone, I know I should be introducing foods but the thought of that scares me. To panic, and anxiety. I don’t want to have to have a fecal transplant or visit the hospital another time for this. I spent enough time there alone from my kidney stone and kidney infection, stent placement and removal. (Where this all stemmed ). I’m not much of a partier but I like to be social this time of the year especially, and I feel hopeless and that my own body that I’ve worked hard to make healthy has disowned me. It’s sad. Does anyone else feel like that?

    I have the dreaded c-diff since Sept. 2019 it is dec. 2019. I hate this , running to the bathroom. I am 63 years old. I got c-diff while I was in rehab. I had my left kidney removed and the Dr.s put me on so many antibiotics. I have grandchildren and three sons. I am terrified of passing this dreadful c-diff on to my family. I am at my waist and with all of this. I have to wear depends all the time. I am taking vancomth I know I misspell that word. I am taking a probiotic supplement every day. I can’t stand this . It’s been almost 4 months. Only 2 of sisters know I have this. Will it ever go away. My name is Helen and I live in a n apt. Does anyone know when this will be over. Thank you for allowing me to share.

    Im (F) 20 years old and have contracted C diff. I Contracted because my wisdom tooth was infected and i was battling the fevers for months and was off & on antibiotics for it.
    When i finally had it removed i had stomach issues where i would feel so sick that i wouldn’t make it to the bathroom, i would be nauseated by anything i ate or drank. I went to urgent care 2 separate times and was told it was the stomach flu, then i was tested for pregnancy. All was negative. I went to my Primary 3 times and GI 3 times after. Since august i have been in a battle against this c diff. I have been on 4 different antibiotics since august for it. I have been to the ER because the diarrhea wouldn’t stop and i couldn’t hold anything down and was on an IV and given Bentyl which has been helpful.

    It has caused me to drop ALL my college courses and miss a lot of work. There are days i’m unable to leave home because i need a restroom near me at all times.

    I recently took Vancomycin and finished and relapsed within 3 days and saw my GI again today and was told i need to be on vancomycin for a total of 2 months.

    I am feeling very down and hopeless and depressed. It’s embarrassing I have to tell my employees i need to miss work because i can’t make the drive with out an accident. I had to drop all my classes because i couldn’t make it to school. I haven’t been able to go out with friends or my family, I was unable to eat for the holidays and still won’t be able to now.

    Is there anyone else who is experiencing it like this? Any advice on what i can eat other than broth and soup? i would very much appreciate it. Thank you.

    I am 21 years old(probably one of the youngest on this post) and I spent this last summer fighting C. Diff.
    It started with me fighting many strep infections and was trying to get my ENT to remove my tonsils, with no convincing I was put on Clindamycin after the 4th time of strep in the calendar year. This Is what I think was the main cause to my c diff infection.
    For the entirety of the summer I was in the constant cycle of strep, antibiotics, c diff. I tested positive for c diff 3 or 4 times (kinda blurs together) over the course of 3 months, it was brutal.
    Finally I got my tonsils out at the end of August (worst pain ever!!!). Since then I havnt gotten symptoms of c diff (knock on wood) but there’s still lasting effects. I can no longer eat dairy or drink alcohol because of my c diff and I’m terrified of getting sick and having the cycle start over again!!!!

    I was in hospital from the 6 of November untill the 13th Nov. I live with my Daughter and little grandchildren 19 months and 6 years. I will finish my Vancomycin tomorrow. I am concerned if I can infect my family when kissing them the little one’s don’t understand why I don’t want to kiss them. My granddaughter 6 also usually sleeping with me and are already asking if she can sleep with me again. Today the little one drink of my cooldrink out of my glass? So now I am terrified that I will infected them too.😢
    Please help???

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Page last reviewed: April 27, 2021
Page last updated: April 27, 2021