C. diff survivor and advocate shares her storyPosted on by
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.
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.
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.
Thank you for the good write ups!
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.
Has anyone felt hallow and empty first thing in morning even after you have eaten?
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.😢
Hi I’m 65 and this might be the third time I’m dealing with c-diff. There is the stench and a ton of mucus so…while I wait for the test to tell me what I already know my mind is just racing and I’m terrified. I can’t take Dificid because I’m allergic to Erythromycin. I had no idea that Dificid was based in that. Vanco was a huge issue for me. Last time I was put in the hospital on an IV drip and immediately had Redman syndrome. Then they gave it to me orally and I had severe vomiting and runs, and dehydration. I was hospitalized over a week, and that culminated in two GI doctors coming to fisticuffs at the foot of my bed over my case! You can’t make this stuff up! I have no idea what they will do if I have this a third time. I have been following a forum for people with this. Some of these poor souls have had multiple FMT’s to no avail, and the new shots are not effective. I’m being told it’s morphed into a super bug. I am absolutely terrified and horrified.
Here I sit, reading all these stories, really understanding what every single person has experienced. I first showed signs of illness in Dec 2018. Went to the ER, they said “oh just colitis”, a week later I was so sick, my dr. called an ambulance. I was finally diagnosed with c diff. Given tons of IV meds, got somewhat better, released. Not much later, started feeling odd again, but was CERTAIN it couldn’t be BACK. Wrong. This time I had C diff, pneumonia, and SEPSIS. I have since been hospitalized 8 MORE TIMES due to ongoing issues with colitis that never seems to fully go away. Even now, having JUST finished another round of meds, I feel it brewing, building up. I am so tired. I’ve lost so much weight, never want to eat. Anyway, I am a mother to 3, widow, and do not have time for lupus AND C diff. Yet here I am. Proud of anyone who has fought this horrid bug.
I was diagnosed with C Diff on 9/6. Wasn’t on antibiotics, etc. Spent over 20 days in the hospital and lost 40 lbs – it turns out that the C Diff I caught was resistant to Vancomycin and I’m also allergic to that and to Dificid, because of its Erythromycin Base. I’m disabled by an autoimmune disease – all of this has been hell on my family and me. C Diff is not a simple disease that is cured easily with one or two courses of antibiotics, it’s often treatment resistant and seemingly getting worse. I’m only in my forties and I can confidently say I’ve never been so ill. Luckily for me I have a wonderful GI who saved me with an FMT. I’ll be forever grateful for that.
I am 76 years old . I have been diagnosed with c-diff infection for their third time in about a year. Dr. Wants to do a fecal transplant. I asked him about the fecal pills and he did not think I would want to take 15 pills. Has anyone taken the pills? Please let me know how many and if it was difficult. How expensive were the pills? I appreciate any help I can get. Thank you.
I am 72 and first contracted C-diff after taking 10 days of Cipro for diverticulitis and then 2 weeks later Augmentin for a sinus infection. I had just decided I didn’t need my probiotics anymore and had discontinued them a couple of weeks prior. After my second round of Cipro for what was thought to be a particularly tough case of diverticulitis, I started having this horrible diarrhea. The smell alone was alarming but then to see the black/green stool was alarming. My Gastro put me in the hosp with IV drip of Flagel and Vancomycin. After 4 days I begged to go home and take oral meds. I seemed to have gotten rid of it but then 2 weeks after ending the treatment I got it again. Then more meds and 3 weeks later it came back. Now it’s been 4 weeks and I got it back again. I am beside myself. My infectious disease Dr and my Gastro Dr are trying to treat it together but I am so concerned about taking all these antibiotics. I am also taking probiotics but I don’t think the Align brand is the right one for this.
I have used a lot of Clorox wipes throughout my home, every possible surface I think I ever touched. Any helpful suggestions would be so appreciated.
Never seen or felt anything like it. Was sure I could outlast it and beat it but how wrong I was. Not only was the trip to the bathroom 10-15 times a day devastating where it felt like a rocket ship blasting off each time but the fissures and hemorrhoids Associated with it, the inability to swallow liquids because of bloating the migraine pain, weakness, dehydration and minor nausea was all so bad and not being able to do anything but sleep ended up making me so depressed I found myself crying and wishing I was dead instead of dealing with the complications from the C Diff. As I see other people had problems with their uneducated about this disease doctors who didn’t understand after two months of reading every day and night in bed I confronted my doctor with facts about the disease he knew little about including that Flagyl is no longer the first line of treatment for adults with C Diff and that you should not treat a person with the same antibiotic for recurrent C diff but unfortunately the newest medication is so expensive that insurance companies don’t want to cover the cost for anything except Flagyl or Vancomycin which is better than nothing but some people are lucky enough to get treated with both medications at the same time and another med after the treatment for 10 more days that keeps the reoccurrence chances very low. I have to have a prostate biopsy and the doctor is trying to put me on two medications that cause C diff and I almost don’t want to have the biopsy for fear of getting it back full swing again.
Fmt saved my life. Easy ,cheap treatment completely restored my gut. Fife month later and I am able to eat and drink any food without pain or adverse effects. I am blown away why doctors do not suggest that treatment right away. I suffered for month was ready to give up ,nothing helped no diet change , probiotics , vancomycin ,treatments galore. One fmt treatment and I was able to eat and the pain was gone ! Fife month later and I am back to a 100% normal. I am blown away.
I have this cdiff and im so scared ive just finished a round of flagyl and ive been taking balsalizide for the diarhea and still have diarhea several times a day i dont even want to leave my house i have an appt with my gastro monday and think theyre gonna stool test me again im afraid ive still got it what next?
I am 59 and recently received C diff Dx. I had non-abdominal surgery in April and received 1 week of precautionary antibiotics. Soon after, I had upper gastro issues like GERD, constipation, nausea and severe heartburn. My gastro gave me a test for SIBO (small intestine baterial overgrowth). The TX was two different strong antibiotics at once 3 x per day for two-weeks. That was awful, but I made it and felt better in the upper GI and still do. I have remained on the SIBO diet for precaution. However, a couple of weeks ago I started having some cramping in my lower abdomen and sometimes a very flushing diarrhea. I usually tend toward diarrhea, so this was new to me. Then, it became completely mucus like stool, and I call the gastro-after hours line. They called right back too and they sent a test order to my closest hospital. Within an hour and a half, the doctor called me back and 9:30 at night and said that I was positive with C diff. Today is my first day of antibiotics now from C diff. I have never been depressed, but I feel I am getting there. I feel like I have been sick for so long. Will this get rid of my gut problems every? I have no problem with diet or being disciplined. I have always been a pretty strong willed person. I just need some support and/or suggestions, hope? Thanks.
I was recently tested because I have been having diarrhea for a month. Then my PCP tested my stool and all came out negative. But he gave me Cipro and Clindamycin to take, so I am not sure if I already had it or got it from the antibiotics. I was referred to the GI on Sept 12, 2019, and tested my stool and positive for C diff so I am taking Vanco for 14 days. I had a colonoscopy on Sept 14th. I have no cancer but this infection is bad. I have lost 20lbs and still am losing weight, about 1/2 lb a day. I am going to follow up with my GI tomorrow.
I am really sad and depressed about this, I have been very emotional for the last 2 months. I do have great support but having c diff is horrible. I’m not sure how others maintain strong but I will take it day by day.
Contracted c diff from a doctor over prescribing antibiotics for bronchitis, 4 different antibiotics in 1 month, I was 65. That was March 2018, lost 35 lbs in 2 weeks, all the ignorant doctor told me to just drink plenty of water and I’m sorry, I’m sorry. Sorry she is she gave me nothing , the head doctor knew me and saw the stool test as c diff and prescribed Vancomycin, she didn’t give me anything, 2 weeks of HELL, delirious, vomiting while having that horrible foul diarrhea and the same feeling the other person said you felt you were going to die. It came back several times in 2018 and test results came back negative, negative my foot, I am now plagued with this and just drink plenty of water? Since then I’v been having flare ups, just recently again for a week and a half lost 7 lbs again, same horrific symptoms my whole system is changed, I know my own body and can hardly eat any more, but if I don’t try to gain the weight these bouts are going to turn me to a skeleton. Again sent in test for c diff, last time I saw my Gastroenterologist, again prescribed me medicine just for abdominal pain, really? I need to find new doctors, I can’t believe these 2 that I’m seeing, like it’s no big deal while I’m withering away. We are suppose to TRUST our healthcare so called professionals not having to search the web for info after we have been compromised, am I a patient or just a commodity to doctors any more.
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.
My mother has been in hospital 4 times in the last 6 weeks due to c diff, now she hasn’t got but she has consipation due to my too many pills to stop the c diff even though infection gone, sgewont eat I as a daughter am nearly driven round the bend with what to do any tips would be greatly appreciated
I have recently contracted c.diff having had 6 courses of antibiotics for a stubbor urinary tract infection. It hit me like a steam train, fever, diarrohea, nausea, dizziness… I completed a course of metronidazole 1 week ago but am still having pains in the abdomen, especially after food, weight loss, fatigue etc…. But there seems to be little after care with c diff. once you have completed the antibiotics. It is very much a ‘wait and see’ attitude with little explaination of what to expect. I am rattling with probiotics and only eat c diff agreeable food, having been a vegetarian most of my 70 years. I know this bacteria can damage the gut and the colon, and i wonder if my abdomen pain is indicating this… My doctor seems very laid back about it… I feel quite traumatised and realise i will from
Now on always be looking over my shoulder to see if c diff is going to return… It is life changing…. I wish everyone good luck! Annie
I am so scared to have C.diff. I was prescribed Clindamycin for a double ear infection. About half way thru my dose I felt really bad, but i took all 90 pills. 10 days later worst abdominal pain ever and pure water stool. I rushed to the er. And it was c.diff. i then took another antibiotic for it anf i cried so much as i now hate antibiotics. I finished that dose and not even a week later…i still have it. I am now on Vancomycin hydrochloride capsules and I fear it won’t help. I have missed loads of work and have cried so much. I just need hope. I needed to know I am not alone.
I have had c diff 9 times in the past year. Been on every antibiotic for it flagyl vancomycin dificid I even had ivig and yet it always comes back. Last time it flared I went to the er they did a stool test told me it was negative and to go home. I kept going back because it got worse and worse and finally the fourth time coming back 10 days later in a wheelchair with a fever of almost 104 they admit me again. Gave me vancomycin and I got better instantly. As I sit here again with the same symptoms starting to plague me again I feel so defeated and frustrated. I don’t have health insurance so I cant afford fmt the only reason I could afford dificid and ivig is because I was so sick they gave me it for free. I’m 29 years old have lost 50 lbs in the last year and am barely working. I just want my life back.
Hi I am a recently diagnosed patient with C Diff, after being treated in Nov 2018 with levofloxacin by a urologist to treat a urinary track infection.
Unfortunately I’ve been prescribed many antibiotics over the years I am 57 yrs. old and this has been a real eye opener.
I am glad I’ve had a great support system in my family specially my sister who has overwhelmed me with lots of great information and resources, I a very lucky to have a good gastroenterologist who acted quickly and order lots of tests.
I have finished the medicine treatment his past week and I have changed my diet and hopefully my entire lifestyle.
I am looking forward to a full recovery and join the education campaign, please count me in and contact me to assist in helping with this great cause.
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!
My husband had c diff for almost a year. They kept giving him antibiotics which tore his stomach up. He finally went to a specialist and the doctor recommended a fecal transplant. He had the transplant done and was better almost immediately. This was done 4 months ago and all signs of c diff are gone, He does take a daily probiotic.
I am a 72 year old woman who has contracted c-diff for 2nd time in 4 years. Had fmt 4 years ago….now have c-diff again. I live alone and don’t have family. I am looking for some type of volunteer advocate to work along with me on this, anyone who can give any type of support.
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….
Hello my name is Carl Wolff And I contracted C-diff after a basic hernia surgery 6/18/13….which I’m coming up on 3 yrs since this dreaded bacteria has taken over my life. I have been extremely lucky because finally 6 months later I was diagnosed n my GI doctor put me on Flagly and then it’s mind over matter and I snuffed C-diff out. ***Here is my issue…the aftermath of having C-diff that no one ever talks about. This past week I had both ears were infections so the ENT put tube’s in both ears.. Mr. Wolff your little older at age 54 why ear infections, sir I was never ever ill in my life til my surgery. ..I am not the same person, I catch everything n now I’m type 2 Diabetic ,what else is next..So I am literally begging anyone that can help me with the aftermath. I take Florastor,Advil, etc. I have never smoked, I don’t do anything now, I hope someone has any information about the aftermath, everyone around me don’t want to be because I’m always dragging n I don’t feel right. So ,I couldn’t tell you how many infections in have had since my surgery in 2013…and as I said both ears have tube’s in them as I write my letter. I WOULD APPRECIATE ANYTHING / SUGGESTIONS /I AM WAVING THE WHITE FLAG. ..you may write to me or send me links because, I’m truly don’t know what to do.
After five days of diarrhea, I attempted to go to work today only to check in and get fluids and tested for CDif. The embarrassment of being infected, despite good (at least up till Sunday) hand hygiene with sanitizer, is palpable. My patient was on standard precautions, not contact. If she was dx after admission, the ER was never contacted, as is the custom. My team is working short and for that I’m incredibly sorry. My cultures are still pending but my GI doc and I do not think it prudent that I return until I’m no longer symptomatic. So, the embarrassment piece is almost enough to make one not want to report to employee health, stick it out and put myself, my coworkers, and my patients at risk, just to avoid the added insult to injury.
I am a C. Diff survivor. I had a deeply impacted abscessed tooth that was missed for years. I was on antibiotics about every 2 months for about 8 years. I had every kind of infection you can think of. After suffering an infection on my skull I developed C. Diff from all those meds. My doctor immdiately took me off all the meds, but 2 days later the left side of my face swelled and the fever started back. I rushed to a friend who was an oral surgeon. He finally found that darn tooth on a scan. The tooth was abscessed and growing into my sinuses. Praise God we found this just a week into my battle with C. Diff. The tooth was removed, but my battle with the monster C. Diff had just started. I suffered for 3 1/2 months with it, and it was terrible. My doctors started me on Flagyl…not sure of the spelling, then Vancomyicin…?, and finally Dificid. Remember the word Dificid people…it saved my life! Very expensive stuff, but it really worked. The cost is about $5000 for 28 pills. I was lucky, my insurance paid for most of it. Hope this helps somebody. Good luck to you all and God bless.
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.
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!!!
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.
C. difficile information brochures are available. Please email the C Diff Foundation with your name and a physical address and the information will be forwarded. email@example.com
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.
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.
Comments are closed.
Post a Comment