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Recovering From A Clostridium Difficile (C. Diff.) Infection

Posted by in Health :: Updated on :: 128 Comments

Almost two years ago, I was at work one day, banging on the keys and writing some code. Suddenly, I felt cold, and realized that my hands and my fingers were shaking. I tried to stay at work as long as I could, but after a while my hands were shaking so bad I could hardly function at my job, so I went home.

I curled into bed, and wrapped my duvet as tightly as it would go around myself. No matter how hard I tried, I just couldn’t stop shivering. I ended up eventually falling asleep, and slept most of the night away. When I woke up, I was drenched in sweat, feeling like absolute garbage.

Six days later I wound up in the emergency room at St. Paul’s hospital, hooked up to an oxygen mask with my finger in a pulse-oxymeter. An hour before, I was at home, fighting to catch my breath, and struggling to reduce a 104F temperature. When I realized it was a losing battle, I called cab and headed for the hospital.

The official report said that I was not only extremely hypovolemic, but that my left lung had partially collapsed due to infection. I spent a few days in the hospital, and received a pile of antibiotics as well as blood plasma. Whatever the root cause was, I’ll never really know, but I was as sick as I’ve ever been in my life.

I spent another week recovering at home, trying to get my lungs working properly again, and also trying to adjust to eating solid food. Unfortunately though, I still felt rather sick, so I ended up getting a few more tests down. What they came back, it turned out that I had contracted a super-bug in the hospital known as clostridum difficile, or c. diff. for short.

Clostridium Difficile (commonly called C. Diff.) actually used to primarily only affect older people, but lately it’s started to affect (and kill) young individuals as well. It is fairly lethal, and is one of the main causes of death amongst the elderly in hospitals. Normally the good bacteria in the intestines (known as the intestinal flora) can combat c. diff fairly easily. Unfortunately though, the use of broad spectrum antibiotics in hospitals often destroys most of the beneficial flora in the intestines, making an individual susceptible to acquiring c. diff. in a hospital setting, which is what happened in my case.

Fighting Clostridium Difficile with Flagyl

There are really only two drugs that work against Clostridium Difficile – Flagyl, which is a rather cheap drug with a pile of side effects, or oral vancomycin, pretty much the strongest antibiotic available today (so strong in fact that it’s a scheduled drug in the United States, mainly to keep it from being overused and creating even more super bugs). I went through a course of Flagyl, and it basically didn’t work at all. When that failed, I was put on a hefty course of vancomycin (which is also very expensive, even with a health plan – I think I was paying $20 a day, and needed 30 days worth). That treatment failed as well.

It’s actually pretty scary when you’re put on the most powerful antibiotic in the world and you don’t get any better. Given that c. diff. kills people, or often results in the complete removal of the colon, I was a bit worried at that point. My doctor obviously was as well, since he referred me to the center for disease control in Vancouver, where I met a specialist.

I was put on a longer version of Flagyl at that point, and thankfully tested c. diff. negative when it was all over. I’ve had several follow up tests as well since then, and all have come back negative, so it’s safe to say I got rid of it before.

But truthfully, things have never really been the same. There are lots of theories for why it happens, but nobody really knows for sure. Some days I have good days where I feel exactly like I did prior to the infection, but most days I usually have stomach cramps or an upset stomach. On bad days I basically don’t even bother eating, as I know it’ll just end badly for me.

I’ve talked to a few doctors, and most say it’s simply post-infectious IBS, which sometimes spontaneously resolves, but often times doesn’t. I’ve also been told that the antibiotics I received probably obliterated all the catalysts necessary to break down lactose, which basically means I’m lactose intolerant at this point. Which theory is right is anyone’s guess. I haven’t really been able to pin down how I feel with any types of food intake, although it’s something I’m going to work towards. It’s been basically 18 months since I was off of any antibiotics associated with the infection, and truthfully, haven’t really improved that much since then.

Many of the prevailing theories (even about IBS) tend to involve a disruption of the intestinal flora. Given that’s essentially how this whole episode began, I wouldn’t be surprised if the two conditions were ultimately linked, and end up having similar treatments. But for now, I think I’m just gonna keep slugging on, taking the good with the bad, and trying to figure out which food items I’m apparently sensitive to.

Update – September 2013

This post is one of the most popular I have written on this website, which is both good and bad: bad that so many other people are having to go through what I went through, but also good in that people can find some additional information and extra support via the comments.

I wanted to give an update as well, since it’s been nearly four years since I originally wrote this. I spent around three years or so after writing this post with what I thought was post-infectious IBS. Basically I would have to go to the bathroom quite often, sometimes with little warning. In addition, I ended up with diarrhoea quite often, which wasn’t very much fun.

One product I tried that gave me some relief were prebiotics. Basically prebiotics are a certain type of indigestible fibre that the good bacteria in your colon can ferment and use to multiply. So while probiotics aim to add new bacteria to your colon, prebiotics work by causing the already existing bacteria to multiply. The product I used is called Probiotin, and it seemed to help for me. You can get Prebiotin on Amazon, or perhaps even locally.

I also made an adjustment to my diet that caused me relief from many of my symptoms – I gave up all artificial sweeteners and most sodas. I did it for health reasons, namely because dumping all those chemicals into my body daily didn’t seem like a good idea. But surprisingly my bowel movements became more regular and the diarrhoea finally started to go away. Three years is a long time to live with both of those symptoms, but I’m happy they are gone now. For the most part I’m back to my old pre-infection self.

If you’ve found this post helpful, please feel free to share it via the widgets below so that others can possibly find it and get some additional support as well. If you’re interested in learning more about c. diff, or have any family you want to educate, here is a great book on clostridium difficile (c. diff) meant to education patients on their options.

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128 Responses to “Recovering From A Clostridium Difficile (C. Diff.) Infection”

  1. Lynn C says:

    Whoa.

    I’m so sorry that happened to you, but I’m glad that you were in the city at that point with the resources to keep you alive.

    That said, as someone who lived for 2.5 years or so with undiagnosed celiac disease – stomach and digestive issues are awful. When you say you don’t bother eating some days – I totally get it. There was a point in my life where I didn’t eat much of anything for that very reason.

    The truth is, malnutrition was just as bad a problem as the whole “intestines attacking themselves” thing, so I hope you are able to figure something out. If I may make a suggestion – some food allergy testing may make your life a lot easier. Eliminiation diets are SO, so difficult to manage, and symptoms can be delayed to the point there they are nearly impossible to track.

    The Bastyr clinic figured out what was wrong with me when over half a dozen “specialists” in NYC could not. Just saying, it’s right here in Seattle. In the meantime, you have my sympathies – and motherly scolding: no more diet coke!!!

  2. Shari says:

    I totally understand where you’re at. I took clindamycin my dentist prescribed and ended up with a c-diff battle that started 06/11/09. Flagyl (cost $10) made me feel better for like 2 days then I felt like it was literally killing me. Went on vancocin for 10 days and tapered for 2 weeks (cost $1400), my c-diff came back just 5 days after finishing. Then went on vanco 4 times a day for 30 days(cost $3,888) 3 weeks into treatment for my relapse it seemed I was having a 3rd relapse so my 30 days was extended another 2 weeks (cost $1900) and I just started the worlds slowest taper (cost $800) and then all of a sudden my symptoms came roaring back again but I tested negative for c-diff sampling over 2 days. Just today, 09/17/2009 I have been told I have post infectious IBS and from what I read and see this is most likely a life long ordeal. I have not been able to eat right since 06/11/09, dairy, some fibers, fruit or veggie skins, most meat, all sweets, all soda, tomato sauce and the list goes on. How did a trip to the dentist end up screwing up the rest of my life, I’m only 42 for crying out loud. I wish you peace and health.

  3. Duane Storey says:

    Yah, there are various groups that are trying to get broad spectrum antibiotics banned, especially for procedures like you had (it’s one thing when your life is in danger, but another when it’s just an elective procedure).

    Just curious — do you use any artificial sweeteners? I tested c-diff negative as well, but still had a very upset stomach for well over a year (with associated trips to the bathroom). I finally tapered off diet soda and artificial sweeteners and things have gotten much better for me.

    Also, start yourself on some quality probiotics. I’ve been told the best of the best are bio-k, so look for those.

  4. Shari says:

    I am taking Florastor and Natures Way Primadolphilis Optima (lacto/bifido blend) which both have consumerlab.org’s highest approval. I may sue my dentist, its a long story but he prescribed 2 broad spectrums within a few months of each other as pure overkill and now look at me, I’m a freakin mess probably forever. I had just started drinking diet soda when the first round of antibiotics were prescribed – feb/march of this year. I was proud to have made the switch and would only drink those with splenda because I thought it was the better choice over nutrasweet. I have not touched diet soda since 06/11/09. I use no artificial sweetners at all. Any soda – diet or regular burn like barbed wire on fire is being pulled through my system. I have been reading some articles recently that splenda in particular is disaterous to intestinal flora. All I can drink nowadays is water or 100% no sugar added red grape juice watered down 80% water/20% juice. Even purple grape juice watered down burns like hell. The pain is always there and if “D” is your issue the florastor stopped that in real quick order

  5. Duane Storey says:

    Yah, sounds like you are doing everything you can. What can I say, it sucks. I doubt you’ll get anywhere with a lawsuit though. I briefly talked to a lawyer as well, and he basically said in order to have a malpractice suit you have to show that the doctor acted unreasonably or essentially performed contrary to how most other doctors would have performed. It’s hard to really say that a doctor or a dentist was out of line for prescribing antibiotics. Had he not prescribed antibiotics and you had gotten an infection you’d probably be equally upset. I sympathize totally, because I went through it too, but I don’t think it’s much of a case (at least no one up here thought so).

  6. Shari says:

    well he did treat me, he successfully treated me. The first time. Then decided on a whim to just re-treat me again with an even stonger antibiotic than the first time because he likes this one better…? Well if it was so much better then why not just give me that the first time? I have spoken to 2 dentists who cannot understand why it was done. He had his chance to pick what I should take the first time and he only treated me on a suspicion of something as it was, the first time was the “cover his ass” prescribing. That is where I’m being told he broke the standards of practice.

  7. Shari says:

    And all pharmacy’s should be required to put a red sticker of death on all bottles of clindamycin. My GI dr says it is the #1 causer of c-diff.

  8. Duane Storey says:

    Well, I’m no lawyer. But malpractice cases in Canada are very hard to win, as the courts favour doctors. Plus, you have to get other doctors to testify that the doctor who treated you was out of line, something most of them do not want to do for professional reasons.

    You actually just reminded me though that there’s a really effective treatment for C. Diff called Fecal Bacteriotherapy. Not sure if you’re heard about it, but you can always try that:

    http://en.wikipedia.org/wiki/Fecal_bacteriotherapy

    I believe there’s a hospital in Calgary, Alberta, Canada that does it routinely. Might be an option for you.

  9. Shari says:

    I have heard about it but there are not too many places here in the US (I live in Florida) willing to do it. I’m hoping I’m done with the c-diff this time so I can just focus on dealing with the aftermath. I’m broke from the expenses I’ve incurred so far, I wont be able to travel to Canada so if it gets down to it I’ll contact Johns Hopkins here in the US and see if I can get in a trial, they do a lot on c-diff there

  10. Duane Storey says:

    Yah, one of the benefits of Canada I guess. My treatment didn’t really cost me too much. I paid about $15 for the Flagyl and about $150 for a course of Vancomycin (my portion of it). I can claim both as medical expenses as well and get 30% of that back.

  11. Shari says:

    There is a huge uproar in the US over socialized medicine. Do you have to wait long times for appointmemts? C-diff needs to be treated quickly and folks here are afraid of dying while waiting for various life saving treatments

  12. Duane Storey says:

    To be perfectly honest, we’re in complete amazement up here how you guys don’t want it. I’m not sure if it’s the propaganda down there, or if it’s a lack of education about other systems. The united states is pretty much the only first world country that doesn’t have socialized medicine, and that’s not because you guys are smarter than everyone else. It’s because most other countries think the lives of their citizens are too important to be trusted to the greed of the private sector. Nearly 50 million americans don’t have adequate health coverage — as a country, how do you guys reconcile that with your ideals? It’s just not possible. The number one cause of bankruptcy in the United States is due to health reasons.

    Nobody has any qualms about letting the police ensure your safety, or the fire department protect you from fire, so why is everyone afraid of having a health system that covers everyone? What about those 50 million people without coverage? Is it ok that they would basically have to die if they get c. diff? I think the United States has been consumed by greed for too long, everyone is more concerned about their own well being and not enough for the well being of their neighbours.

    In terms of wait times, there are some wait times up here, but in general anything life threatening gets treated immediately. If you’re having something done that’s elective, you may wait a month to see a specialist, but I can see a doctor on the same day if I’m not feeling well, or simply go down to the hospital’s emergency department.

    One thing we have way more of up here is preventative medicine — because there’s no cost to see a doctor, most people go in more often for check-ups. In the US, most people tend to wait until it’s absolutely necessary for treatment (since they’re paying for it) and as a result health costs are usual much higher (since it’s harder to treat at that stage). The Canadian system isn’t perfect, but it’s infinitely better than a system where 20% of the country can’t afford health insurance.

  13. Shari says:

    The problem here is that our government has proven over and over it cannot be trusted to properly run anything. It’s bankrupted medicare and social security, the financial waste is disgusting and the scare is it’ll do the same to healthcare. I’m torn because I know something needs to be done but the ones in control cant be trusted. Nobody here will die from c-diff, anyone, even people here illegaly can just show up in a county hospital emergency room and get treatment. You cannot be turned away from a county hospital because you cant pay. You’ll end up with debt out your ass for it unless you qualify for a hardship case but you wont have to die. It’s not a pretty choice

  14. Shari says:

    Plus we dont have enough primary care dr’s here to take on millions of new patients. We need to subsidize primary care schooling becuase nobody here wants to get into it because of the almighty buck, specialists made oodles more

  15. Teresa says:

    I went undiagnoised for 3 years, it was slowly killing me. I finally stroked and they for some reason finally did a c diff test. This was after 20 visits (some with stays of up to 5 days) to the emergency room and I was never tested for c-diff. Needless to say I am now alive but my guts are so messed up. They say I have gastroperisis now, at least I can research what I have and how I am going to have to deal with it. Very bad, sad, frustrating 3 years.

  16. Mona says:

    I too acquired a C-Diff infection after being prescribed Clindamycin. I believe my dentist may some inadequate decisions on my treatment. I ended up in the hospital’s ICU for 10 days with all my internal organ shutting down and a heart attack all caused by the infection. although I am grateful to be alive, I now live with the constance stomach irritation and pain. I can really relate to some of the comments I read about. this happened to me in september of 2009. take care and best of luck to you.

  17. Ray says:

    I am 40. I just got out of the hospital where I spent 4 days dealing with c-diff. It began 10 days ago after being prescribed clindamycin by my dentist. Think this story is familiar? However, what I am about to tell you you might not want to here. I am a dental hygienist. My boss performed my rootcanal. I was in acute pain and therefore prescribed the antibiotic. These broad spectrum antibiotics are NOT handed out like candy. Lets say that you were not prescribed what your dentist felt you needed, then, an abscess, chellitis, any number of problems that could arise may happen. What then…”That Dr. really messed me up…I think I will sue him for NOT giving me an antibiotic.” Your dentist is not the issue. People find out all the time they are allergic to something, or contract a nasty problem, and in our case…the nastiest! There is no finger pointing to be had, this is not the fault of my excellent dentist. It is just a new and life long hurdle I must now deal with.

  18. Duane Storey says:

    There’s no way you could sue that dentist in Canada. As long as the doctor or dentist acted in the best interests and similarly to what other doctors or dentists would have done, there’s no malpractice.

    That said, I disagree with the usage of antibiotics as preventative measures, especially a broad spectrum antibiotic. If you were to get sick, they you should get a prescription. But assigning antibiotics when there isn’t an infection already is just overkill, and is one of the reason people are becoming resistant to antibiotics in general.

  19. Crystal A says:

    It has been two and one half years since I contracted c. diff shortly after having a mastectomy. My surgeons gave me Cipro during the surgery. A few weeks later, I developed a fever and was put on antibiotics and then a lot of very bad stuff happened resulting in an emergency surgery. A few days later I was diagnosed with c. diff. No one knows when or where I contracted this antibiotic resistant strain of c. diff. I think more doctors and dentists need to become familiar with c. diff. What I learned after being referred to a gastroenterologist after two failed treatments of flagyl and one of vancomycin is that this is a very resilient bug, leaving spores behind to repopulate the gut when ideal conditions present itself. Bless my gastroenterologist here is Sarasota, Florida for working with me, having me take double doses of saccaromyces boulardii (a probiotic) while tapering me off the vancomycin. I am still taking saccaromyces boulardii on the advice of my doctor. She believes that c. diff can be prevented if antibiotics are used only when absolutely necessary and then, one should go on probiotics to prevent this bug from getting a foot-hold in the gut.

    IMHO, life is too precious to waste on lawsuits. I think educating people on how to prevent c. diff would be more satisfying. My plastic surgeon now has signs posted warning about c. diff. Now if we could only get more doctors on board. As for dentists giving antibiotics, I think they are between a rock and a hard place. We now know the link between oral bacteria getting into one’s system and heart disease after dental procedures. If we can get them to recommend the use of probiotics, perhaps c. diff can become a thing of the past. Just think, $20 worth of probiotics can prevent c. diff and save the average sufferer and their insurance company approximately $10,000, or so say some experts.

    I guess I was hoping to find a site that could tell me what I can do to get back to normal – pre c. diff. Judging from the posts, it seems that won’t be possible.

  20. Margaret Davis says:

    Today I actually felt suicidal for the first time in my life. Thank you for this Blog. I feel like I am crazy, but I can see now that I am not alone.

    My family must think I am a hypochondriac. As of today I have been battling c-diff for 14 weeks (I wont bore you with the details except to say it was a result of Clindamycin perscribed after sinus surgery).

    Tomorrow morning I am going to get up, get dressed and go sit in my gastroenterologists waiting room until he will see me.

    Thanks you so much!

  21. Catherine says:

    My story started with an insect bite from a camping trip. I was prescribed Cleocin for 14 days by a physician whom I’d never seen before. She was on duty that day when I returned from vacation. My doctor was surprised to see what I was prescribed and for how long 4 days later, but never told me to quit taking it at all. On the 10th day I had some extreme side effects and was told by my doctor to quit taking the medication. Two weeks later I was in so much pain that I called my doctor and he had me drop off a sample to the lab and was prescribed flagyl the following day. After 1 week I still wasn’t able to eat “normal” foods and the doctor informed me that I should by that time and prescribed another 10 days of the antibiotic. 3 days after finishing round #2, I called the doctor to inform him there was still no change. I dropped off another sample to the lab and they discovered I still had C-diff. I was prescribed vancomycin for 10 days and told that it was the last resort medication. The pharmacist informed me if it didn’t work, I would be hospitalized. 2 days after I finished up round three I called the doctor and he had prescribed another round of vancomycin. I had finished it up yesterday and the symptoms haven’t changed at all & are now getting worse. I will be calling my doctor tomorrow to update him on my condition. I too had a day where I was so depressed and knew I would prefer to die than go through this. I do everything I can to function daily. I am mentally busy every morning, but by the afternoon, I am so wore out from the physical pains that I am too exhausted to do simple chores. I just want to feel better and for my quality of life to return to what it was before my summer vacation.

  22. Duane Storey says:

    You may have to pulse the vancomycin medication, or alternate on and off with Flagyl. It’s very hard to get rid of, and it often relapses. You may also want to add some probiotics or prebiotics, as those help fight against C. Diff.

  23. Susan R says:

    Thanks for this informative blog. I too got C-Diff after taking Clindamycin for a dental infection, and this all happened a little over a year ago, in November 2009. Thankfully I’ve been free of the C-Diff for about 11 months, and was feeling much better over the summer but then started losing weight and having intestinal problems again a few months ago.

    Today I saw a gastero-enterologist who said I had IBS because of the C Diff. But this makes no sense to me because I have no pain or cramping, little gas or bloating, and my only symptoms are diarrhea, fatigue, and weight loss. Plus, I was feeling almost normal for about 6 months.

    Wondering if IBS becomes a catch-all for intestinal problems and if I should get a second opinion? Any thoughts on this, please let me know.

    Thanks!

  24. Debbie Gevaert says:

    I GOT C-DIFF IN OCTOBER OF 2009, FROM CLINDAMYCIN.I HAD IT FOR 5 MONTHS I HAVE BEEN EXTREMELY SICK WITH SEVERE IBS FROM IT.I HAD BEEN VERY UN-HEALTHY BEFORE IT AND WAY WORSE NOW.I NOW HAVE BLOATING EVEYDAY, CONSTIPATION ALWAYS, NAUSEA AND CRAMPING ALL THE TIME.I DON’T WANT TO EAT EITHER, CAUSE EVERYTHING UPSETS MY STOMACH. MY FAMILY THINKS I’M CRAZY!I FOLLOW THE DOCTORS ORDERS BUT NOT MUCH HELPS. I HAD 3 COLONOSCOPYS LAST YEAR,OF COURSE THEY DON’T FIND ANYTHING!I HAVEN’T WORKED FOR 7 MONTHS. I LOST MY JOB BECAUSE OF IT!WHERE CAN YOU GO REGARDING A BIG CLINIC FOR HELP? I LIVE IN GREEN BAY AND I WOULD TAKE ANY DOCTOR ANYWHERE FOR HELP! I’VE BEEN VERY DEPRESSED OVER THE CHANGES IT HAS AFFECTED IN MY LIFE!ANY SUGGESTIONS WOULD BE GREATLY APPRECIATED!

  25. You may want to see if you can find somewhere that does “fecal bacteriotherapy” – basically they try to repopulate all the bacteria that clindomycin destroyed in your intestines.

  26. Erin says:

    I had A C-Diff infection back in 2008. I Got it from a course of antibiotics that were from a chronic UTI that needed 3 treatments to resolve. I was feeling so sick and run down and my MD thought I might have Lyme disease or EBV/chronic fatigue syndrom. Tested negative. I went to the ER 4 times in 2 weeks as my symptoms got worse and I could no longer hold down anything due to the severe cramping and diarrhea. Then I also began to have bloody diarrhea/vomit.
    I was diagnosed with GERD/IBS at age 17 and was turned away from the ER and told it was just my GERD/IBS acting up. I was admitted my 5th visit to the ER for severe dehydration. Only then did they test my stool and what do you know it was + for c-diff. I was started on IV Flagyl and had to take 2 more corses of oral flagyl to finally get a – test. Now 3 years later my stomach is awful. I live almost everyday with some form of IBS with diarrhea or constipation. I never have normal bowel habits. It is really awful. When I get a stomach bug it feels ten times worse than normal. Has anyone out there found any homeopathic or relief post C-Diff? I had tried high fiber. I can’t tolerate soy. Sometimes dairy is fine and other times it’s not. I feel like there is more residual from C-Diff infection than the medical professionals tell us! Also I am 29 and I was 27 when I got it.

  27. Latosha C says:

    Hi, I’m sorry to hear about your unfortunate events, although We share the same experiences! I acquired my c diff infection after being put on fairly strong anitbiotics for a sinus infection. I was first given vancomycin and that didn’t work, then after given flagyl for two weeks. I’ve been hospitalized and tested serveral times for this infection, but the downside of it all is that I’m also pregnant. I’ve lost so much weight and I can no longer tolerate dairy products either, and my stools have no longer been the same! Although, I have come to like using milk product alternatives like Lactaid Milk, and non dairy creamer, but you’re right that’s not the same. I miss cheese, and even other things I eat I fear whether or not if it’s going to upset my stomach. This infection has changed my life dramatically, and I hope I won’t be this way forever, I have faith that there will come relief, and I will keep you in my prayers! God Bless, and Wash those hands(hospital humor).

  28. Marie-Jane says:

    Hello everyone,

    I have also have had some problems. I have had c diff about 6 years ago and I’m only 33 in Montréal. I get really frustrated sometimes, I have so many problems with my stools. I keep seeing doctors and then they swipe my healt card to get their money and then they tell me that there’s nothing wrong with me. Does anybody else have this problem? I honestly didn’t change much in my diet and really like eating too much so I don’t plan on changing my diet. I go for a stool about once a month and that’s because I take 4 exlax’s and then doc’s try to tell me that there’s nothing wrong! When I do go it hurts so much, I feel like knives are trying to get through my intestins. Are there support groups? Or somebody know who I can talk to about this problem?

    Thanks,

    Marie Jane

  29. Mary J. says:

    I’m glad to find your site. I contracted C. Difficle from a hospital when my son was born here in the US. I was given “preventative antibiotics” which ended up killing all my good bacteria and allowed C. Diff to florish. It has been 2 years now, and I’m still a mess. I’ve been treated for all sorts of GI issues, and I’ve seen so many doctors. The worst thing for me now is my anxiety. It is through the roof. My GI specialist told me this is completely normal because gut imbalance is directly related to seratonin levels (and feeling of well-being), thus my fight and flight response is always on 100%. I’m so drained, and I don’t know what to do anymore. I’ve hesitated taking meds like Xanax, but I’m at the end of my rope. Currently, I’m trying so many natural things: lots of exercise, no caffeine, acupuncture, magnesium, and magnesium baths. All these have helped so much, but I’m still a mess. Have you felt this with your C. Diff?

  30. I had replied in January of 2011, but would like to again. I would like to thank everyone who commented on this website. I now feel like I’m not going crazy, I’m not the only one with bad stomach issues after 2 years and I’m not the only one who’s depressed! I have had another endoscopy and cat scan which found nothing. My 2nd GI doc said he can’t help me anymore. Everyday I live with severe cramping, nausea, bloating and stomach pain. I too do not eat at all many days because I’m either sick already or am afraid of getting sick. My family thinks I’m nuts and doesn’t want to hear about it anymore. I have loss weight also. Trying to figure out foods is impossible. One time you eat something your fine and the next time you eat the same thing you get very sick.Who Knows??? Did anybody get vitamin D or B=12 deficiencies? Are any of you working because I can’t even get things done at home! I’m very fatigued!! Thanks again for your input, I don’t feel so alone!!!

  31. I’ve had the same issues essentially. I got sick and ended up in the hospital, and they put me on clindamycin. That’s how all of this started. They I got c. diff, and it took two courses of flagyl and one of vancomycin to get rid of it. Now I have intestinal problems, even years later.

    All the research I’ve read basically seems to indicate the problem is that the bacteria in the intestines are now out of whack. Antibiotics kill bacteria, even the good ones.

    I found that splenda (surcolose) made my symtoms MUCH MUCH worse, so definitely try giving up artificial sweeteners for a while. I gave up soda pop a while ago thinking that maybe the acid in the soda wasn’t helping my recovery. I’m currently eating probiotic yogurt like it’s going out of style, and so far I think it’s slowly making a difference. I think the end-goal is to try and attempt to repopulate the intestines with good bacteria (the ones that came from your mother’s breast milk primarily) – the best way to do this is with probiotic yogurt or fermented products.

  32. kate says:

    I hope you are feeling better! I suffered a 6 month battle with c diff and suffered such severe pain that I would not wish it on someone I hate. I was able to get rid of mine by doing a fecal transplant enema at home. I had had enough of the of the antibiotic tx that got me no where, I had lost 30 lbs in 3 weeks and had been hospitalized twice at that point. I finally tested neg but like you, i continued to experience symptoms, im not sure if my bowels will ever function properly again. Just today I started having symptoms again and its been almost a year since I was cleared of it. I have been sick with a sinus and throat infection for weeks but have not taken antibiotics because of my fear of recurrance. Some info I have read suggests that weakened immune system is enough to cause recurrance. Im hoping for the best, but if I do test positive this time, I will do the enema right away, the antibiotics are not able to fight these newer strains of cdiff and the complications nearly took me out last time. I recommend an enema to anyone who is battling this, it is very easy to do.
    Good luck to you all

  33. kate says:

    also, the healthy stool has the good bacteria you need, if you are feeling desperate like I was…

  34. Gretta Small says:

    I am 78 years old. I acquired C. difficile when in the hospital for a bilateral mastectomy, but it did not manifest itself until my endodontist gave me clindamycin following a root-canal repair a year later. First I was given metronidazole, but promptly relapsed. This was followed by three courses of vancomycin ($2,000 each) with a relapse after the first two courses. At the advice of my gastroenterologist, I repeatedly sanitized everything in my house by wiping it down with a 25% Clorox solution. I have been on a much stricter diet than most, apparently. I eliminated all dairy (except for yogurt), all wheat, all fat, all sugar, all artificial sweeteners, all vegetables/fruits (except bananas), anything with fiber, and all alcohol, living on only bananas, white rice, applesauce (unsweetened) and yogurt. I did this for six months. Gradually, I added back the occasional baked potato topped with yogurt, pasta (first rice pasta, then wheat pasta) tossed with yogurt, then the occasional sweet potato. Not for six months did I try any meat or additional vegetables. I had no cramping, bleeding, or diarrhea (although blood tests showed my blood to be low in protein). Now, a year later, I can eat all vegetables/fruits, but I have permanently eliminated artificial sweeteners voluntarily, as they frequently cause diarrhea (unrelated to C. difficile); I also avoid sugar, alcohol, fat, and high-fiber foods. MY worst after-effect was extreme fatigue and exhaustion (some of which may have been related to my extremely strict diet). However, my old pep is now returning, and I am grateful to feel normal once again. Just a couple of months ago, I had to have oral surgery and was told I would have to take antibiotics for 10 days. As you can imagine, I was extremely fearful. However, my oral surgeon consulted with my gastroenterologist as to what drugs to avoid, I doubled up on my yogurt intake, and all has been well. I believe the key is extreme caution (diet, sanitizing) and not expecting a fast recovery.

  35. brenda says:

    I am curious if you have heard from anyone that suffered from reactive arthritis after contracting c-diff? After having a c-section and needing broad spectrum antibiotics I battled c-diff for months. After 2 trips to ER I was always sent away with diagnosis of dehydration and “undiagnosed abdominal pain”. By then I didn’t care anymore and just wanted to go to bed and die. Although I never tested positive with stool samples, my baby and older son both contracted c-diff from me and they both tested positive. Have you ever heard that stool testing has a high percentage of false results? About 2 months after being finally treated and told I had c-diff by a GI doctor, I woke one morning to extreme pain and swelling in my knee requiring another trip to ER. Fluid drained from the joint was negative and was told it was just inflammation with uncertain etiology. Follow up with GI doctor he told me that reactive arthritis can happen after c-diff but he didn’t seem concerned about it. It took about a year before I felt my GI tract was close to normal. But my reason for asking is that now 5 years after the first day I became sick, I am still battling painful inflammation and arthritis symptoms in my knee. I had never had a problem with my joints before c-diff and I never had an accident or injury. I am only 46 and mostly very active and not significantly overweight. I can’t walk without pain now and am seeing an orthopedic surgeon soon. I am posting this because I feel that there is a lack of definate information about c-diff even amongst doctors and it is often downplayed as something that can easily be treated with flagyl. Could it be that chronic immune system “tweaks” can be put into place by this bacteria even after it has been treated and “cured”? Just wondering because I sure do feel like the only person in the world that worries about a possible connection between my past c-diff and my ongoing joint problems.

  36. Angela says:

    I contracted c. diff after going to an emergency care facility for a sinus infection/bronchitis. The doctor prescribed Omnicef/Cefdinir which I took but by the second day, I was getting worse. After a month, I went to the ER with pain and bloody stools. I was diagnosed with c. diff and put on Flagyl. It did not work. I was prescribed a second dose of Flagyl; that did not work either. Finally, I took a 30 day dose of Vancomyacin. Success or so the doctors said. I have been c. diff “free” for 3.5 months now however, the very symptoms that landed me in the ER to begin with has become a constant. About once a week I get very sick with shivering, abdominal pains, upset stomach, loose stools, blood, and nausea.

    It seems to me that anyone who contracts c. diff and survives, the symptoms never really subside. I came across your posts when trying to see if this seems to be the norm for others and fear that this may be a life long issue. I appreciate everyone’s posts as they have helped me come to some realizations that this very well may be my life for a long time to come.

  37. clandy says:

    I found myself nodding along as I read your blog. Let me start out by saying, I had a non-healing wound that was being aggressively treated with antibiotics- around May or June of last year I started to feel really ill… I put it down to having to watch my mom slowly die to breast cancer- I had her at home with hospice and between that and work, I really had no time to think of myself.

    In July and August, my wound started acting up again and as I’d used all of my time for mom, I couldn’t really take off… so when I started feeling sick to my stomache and having the feeling of a fever, I put it down to angst and tiredness and didn’t even buy a thermometer.

    I went to see my doc finally on August 17th- he called an ambulance and sent me straight to the emergency room. I had a temp of 104. something and severe pain and nausea. They did a bunch of tests, did a cat scan, came back and asked if I’d ever had IBS or IBD, I said no, my stomach is usually like cast iron, no problems at all. They finally diagnosed me with C-Diff and started me on Flagyl and Vancomycin along with something else at the beginning. I was sicker than I’d ever been and I think I’d have happily died there rather than continue to go through it. And continue I did- I was in the hospital almost 4 weeks (in a place where they won’t keep you a day for a mastectomy). I finally tested negative 2 or 3 days in a row and they said, okay you can go home now!

    I missed another 4 months of work because I’d lost 50 lbs in the hospital, which they then refilled me with water so I went home heavier than I came in and sloshed when I walked. I’ve had arthritis for years and it now seemed to be unbelieveably painful.

    Here I am, 7 or 8 months later, back at work since Dec and I still feel awful or pretty bad most days. The stomach that could withstand anything now cringes at the slightest thing. I too seem to be lactos intolerant now, though I never had been before. My arthritis pain has been regularly off the charts and I feel like the lower belly pain I had in the hospital comes and goes.

    When I talk to the doctors, they tend to say yes, you were a very sick young lady, it’s lucky we caught it when we did…. but I don’t much feel lucky these days, just overwhelmly tired and sore.

    Also, I found that while I was in the hospital, I was no longer able to drink anything carbonated… so I switched to water, then CL ice tea which I seem to be able to handle. I have tried a few times to go back to diet soda but either the acid or the bubbles or whatever stops it at the back of my throat and if I try to force myself to swallow, it comes right back up. (did that in the hosp. too).

    I’ve taken probiotics since the beginning of the wound issue as I was put on so many antibiotics and I wanted to avoid certain issues. I still take them tho I don’t know that they help at all.

    Hopefully, this will eventually leave us and not come back again. I don’t know… I’ve had surgery on the wound and been given flagyl, clindomycin and vanc again, which was to keep me from going the c-diff route again.

  38. clandy says:

    Sorry, quick note for Debbie- I left the hospital with hypomagnesemia (low magnesium) hypokalemia (low potassium) hypocalcaemia (low calcium) and low blood protein levels.

    They’ve moved up a bit, enough to please the doc tho’ he says some are still low. But just recently I’ve had to start taking 50,000 UI of vitamin D2/D3 due to abnormally low levels of vitamin d.

    So, it seems that it really does mess up all kinds of things. Next time I’m at the doc I’m going to bring up some of the issues I’ve read about here. I had been thinking that it was just normal… but, I don’t think it is- I think a lot of it has to do with my being so sick last year.

  39. jeanne b says:

    hello…. i went for a root canal and dentist gave me a rx clindamycin — 4 x a day for 10 days
    ( 40 pills)…. i only took 2 pills…. ended up with c-diff….been in bed for 8 days now.
    am on flagyl and probiotics……after reading all of these comments i am even more
    depressed !! i hope i get over this with no long tern damage….
    there should definitely be a WARNING by the pharmacy and the doctor /dentist.
    ( i am already allergic to penecillin….. which i told the dentist !!)
    i want my life back…….
    when is it safe to try to eat regular food?…. right now – banana’s , crackers and
    campbell chicken noodle soup.
    thank you all for the info….even though it is depressing…. jeanne

  40. Gretta Small says:

    Flagyl may or may not work — it didn’t for me. I wound up takingTHREE 10-day courses of vancomycin (at $2,000 per course); I lived on bananas, applesauce (unsweetened), plain boiled white rice, and dry white toast (BRAT) for SEVEN MONTHS. (Also saltines and LOTS of water.) HERE is the good news, though. I came out of this with a healed colon and can now eat normally again. C. difficile ulcerates the colon; it can eat right through the mucosa and cause peritonitis. It may be boring, but I urge you to stick to your strict diet (BRAT) until you are totally healed. Drink lots of water and eat only low-fiber crackers/toast. My gastroenterologist recommended Align (probiotic) daily and several Activia yogurt each day; I will be following that regimen for the rest of my life. Are you sanitizing? My gastroenterologist told me to wipe down every surface in my house that I ever touched, using a solution of 25% clorine bleach in water. The spores from C. difficile can live for months, even years, on household surfaces, causing recurrence of the C. difficile. Just recently, I had to have dental surgery and had to take antibiotics. I was terrified. However, my oral surgeon contacted my gastroenterologist and she told him which antibiotics to avoid, and I came through the oral surgery without a recurrence of my C. difficile. I would say to you: Yes, the longterm and potentially deadly nature of this infection is depressing and discouraging; I understand. But there IS light at the end of the tunnel. Think of every day of your journey as getting you ONE DAY CLOSER TO HEALTH. There IS NO QUICK FIX. Good luck!

  41. Gretta Small says:

    An addendum.
    Wash your (white, cotton) underwear in the washing machine, using the hottest water possible and adding Clorox bleach. Do not wash any other items WITH your underwear and do not wash anyone else’s underwear with yours. Use white sheets/towels and wash/bleach them in similar fashion. Clean your entire bathroom EVERY SINGLE DAY with 25% bleach solution (until you get a negative culture). I bought a handsoap dispenser (for the bathroom) that dispenses soap when I just wave my hand in front of its “electric eye” (one less thing for me to touch/contaminate). I also put a paper-towel dispenser in my bathroom and use only paper towels when I wash my hands (which I do, dozens and dozens of times each day). Even when you get better, avoid corn products (difficult to digest), peas/beans (the relatively indigestible hull), sugar (and anything containing sugar), alcohol, and all artificial sweeteners. I understand your being discouraged. In this day and age, we are accustomed to “instant recovery” from most illnesses, and recovery from C. difficile is long and boring and SCARY. But it is worth it, following the “rules” and making some changes in your life. In my case, my gynecologist and urologist were both astounded at my recovery: the gynecologist’s brother-in-law had been in the hospital for six weeks with C. dificile and the urologist’s father-in-law (just my age, also having had a dental procedure where they gave him clindamycin [like you and like me], and a PHYSICIAN) had DIED of it. There IS light at the end of the tunnel, even though the tunnel is a long and dark one, and I promise you, getting WELL is wonderful, even if it means you have to make some unwanted dietary changes in your life and even if it takes a long time. Courage!

  42. T. Thomas says:

    I was also diagnosed with c. diff infection caused by Clyndamcyn from dentist. Four doctors and three years later I have gotten rid of the infection, via vancomycin. Flagyl made me feel ike a champ for about a month then I felt worse then ever. Had to leave my children with my mother for months, wrote a will and prayed a lot for understanding because I really thought I would die before any of these doctors figured it our. I self diagnosed myself through web MD and onyl by a random act of God after seeing four paid geniuses a doc-in-a-box (american family care) finally decide to perform a stool sample, which seems to be only the way to test for this. I am almost a year past the lat infection but life is still impossible. I have never been able to regain my energy level, I pop pills every day WITHOUT FAIL for nausea and stomach cramping, Somedays I dont eat too because its just not worth the pain. I kept a food diary and could never pinpoint anything because my GI doctor did not believe that food could be any kind of trigger for the recurrence of c. diff. I call bull&*$# because I have lived as my own science experiment. I dont think that my life and my health will ever be restored. I cannot work because some days I’m just too sick to even get dressed. I warn EVERYONE I can about the dangers of that antibiotic and still dont understand why a medical lable would not list this infectiion as a possible side affect. My dentist was giving this to me like candy any time I had an tooth infection. I pray for everyone’s continued health and struggle with this disease. Used to be a speaker and can’t even get up long enough to advocate for this disease. Be your own advocate– if you still feel sick go back every two or three months (since they wont let you restest sooner than a month) and retest. These doctors will let you die because of their ineptitude.

  43. Markus says:

    Gretta hit the nail on the head everyone! IT IS UP TO YOU to recover from C Diff, I endured it for 7 months, with 5 relapses… but it was not until I began to become serious did positive changes happen. NO MORE SUGAR… at all, I drastically changed my diet to a bland one of oatmeal, bananas, rice, toast, fibre bars, lots of yogurt, vegtables, and the odd soup here and there. Eat lots!!!!! By not eating your intestinal flora will not get the normal bacteria it once had… you are depriving yourself from the flora your body needs to recover, not only should all of you be on Florastor or other probiotics, but you need to eat the normal bacteria as well in order to get better.

    Wash your hands constantly! I also threw out all my old infected underwear and bought new clean ones once I started recovering. ASK TO SEE A SPECIALIST, most doctors do not have the knowlegde to combat C diff but someone who has dealt with numerous cases will know how to treat you.

    Do not get depressed, I know it is hard…. it was the hardest thing I ever went through and no one will understand you. BUT things can get better, ask your doctor about news drugs coming out, there is one call Deficid its only a year old, but apparently it is 3x better than vancomyxin with less side effects and bacteria resistance. Also ask your doctors about fecal transplants, as gross as it sounds it has completely helped people with C diff who were willing to do it.

    It is time to be healthy, this was a wake up call to me, I now exercise everyday, no longer eat fast food or junk food, and really think about everything I put into my body. And just so you know I did not get C diff from antibiotics… I must have come in contact with spores somewhere out it public as I have not been on antibiotics for the last 2 years before this and I was a healthy 20 year old male who was in shape and fit.

    What this tells me is C Diff is becoming a real issue not only in hospitals but soon to be in the public, people need to be more aware and healthier choices need to be made.

    Hope this helps everyone! Also I learned alot during my ordeal by going to http://www.cdiffdiscuss.org... a great website with lots of good people.

  44. Lucy says:

    Thank you Duane for posting your story…. misery loves/needs company. My bout came post-op about a year ago. Found this post when I was Googling “C-Diff and IBS” I appreciate everyone’s stories and advice.

  45. Darlene survivor so far says:

    Have you been approached about a fecal transplant? I was losing my battle with this BS , with 5 children, one only 4 . I had a transplant 2 weeks ago. I still am not back to my spunky self and after two months of starvation( no one had answers down here in Sarasota Florida) nor did they care whether I lived or died they just wanted me away from them. No one understands this nightmare, the fears are constant. What if…. I get this, is that going to kill me or will the cdiff come back and finish me off? I want to live without fear, but Noone has told me anything. I never met the Dr. Who did the procedure, he is too busy to follow up with me. I prayed for a gun at one point, so if anyone can tell me what happens after you get the transplant please e mail me. I am paralyzed with fear and my brain is still waiting for it to come back everyday, every minute, I want to live and see my children have children, but no one will say it is going to be OK

  46. Nancy Moore says:

    Since having an emergency gall bladder removal complicated by pancreatitis in 1991, I have had bowel issues — IBS, diverticulitis, occasionally bloody stools, ten years of diarrhea, followed by constant constipation. A colonoscopy a year ago showed only a small polyp and a some “scarring” and “twisting” of the intestine. I have been taking probiotics for about 6 or 7 years, and they have helped. I have also heard of a “new” probiotic called “Threelac,” from Japan which has healed many difficult cases. Another is “Florastor,” which is a yeast specific for treatment of C-Diff. I am now allergic to several antibiotics I used to be able to take without a problem. ( Fluoroquinolones, for example, caused a tendon rupture in my calf.) I have a friend who is suffering severely from C-Diff. and have recommended to her that she try any of the following foods in small amounts over the course of a day: weak tea, water, bananas, scrambled eggs, yogurt, brown rice, oatmeal, soda crackers, broth or soup, unsweetened gelatin, unsweetened applesauce, yams, canned apricots. No sodas, no sugared drinks, no raw foods. I also believe that any vitamins taken should be liquid, or should be ground up before ingesting. When the colon has been damaged, it is no more able to handle what we call a “normal diet” than an infant’s colon. Rice cereal and jars of pureed baby food are gentle to babies’ systems; they may also work for adults with intestinal issues who need the nutrition. Another suggestion is unsweetened electrolyte-replacement drinks. I fully understand the fear, discouragement and depression that can arise from this condition. I never know what a day will bring, and am just glad for the good ones. My best wishes to you all.

  47. AJ paint lady says:

    I am so thankful I found this blog I was diagnosed with c diff four months ago I’ve been feeling lousy and I can’t seem to Clear this. i have been treated with Vanco and Flagyl. I am a RN and my job And financial well being is at risk. I appreciate knowing that I’m not crazy and my symptoms are real thank you everyone for sharing your stories

  48. Danielle says:

    I’m 27 and have be diagnosed with C Diff, I have taken flagyl and that didn’t work, I am currently on Vanco and it is taking its toll on me. I am almost feeling worse then I did before. I’m glad to have found this blog so I know what others have done and what problems everyone has, at first I thought I was crazy. I let this go for 2 months before I found out what was wrong, the dr said this is a lot of my problem. I hope the Vanco works

  49. badbugforsure says:

    This needs to be elevated to a reportable occurrence with the CDC so that they can track the strains and the community spread. I KNOW I did not contract this in a hospital or care facility, but I was prescribed Clindomycin for the first time in my life for a skin infection and the symptoms started almost immediately. I somewhat suspect my new Dr.’s office, but there is also a chance I contracted it from someone I knew intimately. We need to organize now to help stop the spread of this deadly bug.

    I have been using Garden of Life Raw Probiotics, which was recommended to me by a sales clerk at HiHealth whose EMT father had contracted C-Diff in the ER. They make a formula for men and one for women. I also found a study that said that Green Tea may kill the bug, as well as the herbs Turmeric and Curcumin. I think that the Middle Eastern diet of homemade yoghurt, kefir, turmeric-soaked meats may have a thousand year headstart on probiotic health systems.

    I had a positive culture test from the ER, so I know this is what is wrong with me. Eating a lot of Greek yoghurt, Activia, taking a really good probiotic and pulsing Flagyl seems to be working, but I am sure I am losing a lot of weight.

    Also, good hygiene with hydrogen peroxide rinses, 10% bleach cleansing of common surfaces (although I have read as high as 25%) AND TOTALL AWARENESS OF WHAT GOES NEAR YOUR MOUTH is essential. My doctor says it isn’t that contagious, but I think that it is more common in the environment than the medical community understands.

    I’d love to connect with other sufferers to share what works and what doesn’t. My next step is to see an Infectious Disease specialist, although I do not have medical insurance and have no idea how I will pay for it if that is necessary.

  50. Gretta Small says:

    I chuckled when I read Darlene’s comment — nobody where I live knows anything about C. difficile either! I have written a “patient handout” I hope to get the local physicians to pass on to new C. difficile patients, to tell them what to do and how to do it — what to eat, what to avoid, how to sanitize one’s environment, how to do one’s laundry properly, etc. Knowing that, once acquired, ONE WILL ALWAYS HAVE C. difficile, is a sobering thought, and knowing one must permanently alter one’s way of living is even more sobering — particularly to the young, who have grown up in a time when there is a “cure” for virtually everything. Physicians and other health professionals are gradually becoming better informed, but even they are behind the learning curve. For example, I wish someone had told me I would have IBS for a very long time following my acute illness — but I doubt, truthfully, that they knew that. However, even that is getting better, and I recently had a very small amount of “mild” (I used to eat the “hot”) salsa on my quesadilla, and am grateful for every small bit of progress. I continue to take probiotics daily and to eat 3-4 Activia yoghurt daily. Just a month ago, I had to take a one-dose broad-spectrum antibiotic for a UTI and was terrified — but, so far, so good. Be watchful, and if you feel something is not right, get a stool culture immediately so you can be started on medication promptly. Once symptoms have started, time is your enemy. In my opinion, Flagyl (metronidazole) is utterly worthless, but until something cheaper than Vancomycin and the new drug, Fidaxomicin (even more expensive) comes along, it will continue to be prescribed. I especially sympathize with those who, months after the acute illness, still feel drained and tired. It took me a few years to feel more energetic. Courage! Keep fighting the good fight.

  51. Kenny says:

    It is so good and bad to hear all of the people telling my story. Same as a lot of you dentist/ clecimycin=extreme case of cliff. I was hospitalized 3 times and countless trips to the er. Flagyl made it worse vanco didnt work either. It wasn’t until an infectious disease doc. Put me on deficid. It cleared it up but you think vanco is speedy. Deficid runs $2400 for a ten day dose.
    I have also been dealing with the after effects of it and will be informing my doctor of this blog. I constantly feel sick and puky all the time. Thank you for this site I think my girlfriend needed to hear from other people what I have been trying to tell her

  52. jr says:

    I got c-diff after gallbladder surgery. I have been on vanco for a month and have tested neg for c-diff but still
    feel bad. I am bloated have cramps, tired, soft bm sometimes 8 times a day, somedays feel like i’m going to puke, and don’t want to eat or drink…in last 8 months I have had shoulder surgery, kidney stone, gallbladder surgery,shingles and now c diff.. I am so tired and ready to give up, Dr are dumb and don’t care..Im going to lose my job that I have been at for 19 years and I will have no insurance..I’m ready to die theres no way i can live like this..

  53. Taeyler says:

    Hello. I am 17 and I just got diagnosed with C. Diff a few days ago.. I got put on 10 days of Flagyl and my stomach is killing me.. I have bad cramps.. nausea.. no appetite.. pus and some blood in stools.. scared to eat anything besides mashed potatoes soup rice and bread.. i feel like i am dying. I keep reading how everyone relapses or is still sick years after or has needed special treatments and I am really scared.. I am deathly terrified of throwing up so problems with the stomach scare me regardless.. i already have bad stomach issues and take 40 mg of omeprazole.. i want to get better im scared i wont know if im better or not or that i wont get better.. idk what i am supposed to do or what i can do to make sure i get better? I feel like dying right about now.

  54. Gretta Small says:

    Taeyler, I understand your fear and your despair. Flagyl is usually the first drug doctors prescribe for C. diff. (because it is inexpensive), but it may not work for you. Go back to your doctor after you finish the 10-day course, and ask for a stool culture. If your stool culture is still positive, you will likely be put on Vancomycin, which is extremely expensive, but more effective than Flagyl. Two bits of advice: 1) Be persistent and 2) DO THE WORK. What I mean by the latter is this: Getting well from C. diff. is a long struggle that involves tiresome, boring, not-dramatic procedures done over and over and over. Sanitize everything in your surroundings DAILY with 25% Clorox/water wipe-downs. Wash, wash, WASH your hands. Eat the boring diet (I ate BRAT [bananas, cooked rice, applesauce, and toast] for months and months). By the way, Flagyl makes everybody feel terrible. Keep going back to your doctor and getting repeated stool cultures (after you finish each round of medication). This is a L-O-N-G war you’re going to be fighting. I wish that were not true, but it IS. Do some nice things for yourself — read, if reading is what you love; do hobbies, if that is a favorite with you. Try to divert yourself. Rest a lot and drink plenty of water. Avoid any and all foods/drinks with sugar in them. Avoid artificial sweeteners. Take your medicine, eat the recommended foods, take a deep breath, and know that there are people “out here” whom you don’t even know who are PULLING FOR YOU!

  55. Tanisha Thomas says:

    Coming on my one- year anniversary if c. diff diagnosis. I am also lactose intollerant as a result of this disease. Cheese consistently makes my stomach feel like the c. Diff is back. Ive been put in anxiety/depression medication because I had so much anxiety about getting sick again that I was having panic attacks. One so bad I went to the emergency room thinking it was a heart attack. Still have a complete lack of energy, still on a BRAT diet and will be for the rest of my life, still 20 pounds underweight, just beginning to come to terms with my health never being the same. I swore to God however he fixed me, I would be ok with it. I will never be the healthy, vivacious person I was, mountain-climbing, wind surfing and such, but I haved to see by baby lose her first teeth, my eldest daughter ride her first horse- I am thankful for anytime that God gives me no matter what my condition. Continued prayers for anyone living with this disease or in the wake of it. I didnt think I would live to see this day and here I am. There is always hope!

  56. Mary J. says:

    I’m following up on my post from a year ago. Tanisha, reading your comment made felt like I was reading my own posting. I’ve done everything I could to avoid medication for anxiety, but sometimes I have felt at the end of my rope. I completely empathize with everything you are going through. I have such sadness that I’ve been too sick to watch my boys grow up, but I seem to be a bit better each year.

    For everyone here, I wanted to post a new discovery I’ve made. After I got C. Diff, like most of you, I lost the ability to eat almost everything. I became lactose intolerant, fat intolerant, alcohol intolerant, gluten intolerant, and red meat intolerant. I got very ill if I ate any of these (I ate a very different diet from many of you – I could only eat veggies, tons and tons of veggies, spicy food was no issue either). When I explained all of my intolerances to my GI specialist, he was very intrigued. He thought that C. Diff probably wiped out all the naturally occurring enzymes in my GI system. I started thinking about this, and went to Whole Foods and started taking a multi-vitamin that includes enzymes (lipase, lactase, amylase, etc.). It may be a coincidence, but I can finally eat food. I can eat french fries, hot chocolate, etc. without immediately need to run to the bathroom. The first time in 3 years! I’m writing this in hopes some of you try this too. It’s harmless to try, and I want to test the theory to see if the enzymes are helping. Like others, I’ve also been going nuts with probiotics. I also rely heavily on a product called magnelevures (a combination of b complex vitamins, magnesium, and taurine). It has been so helpful with c. diff caused anxiety and panic attacks, although the only thing that can actually stop my panic attacks is acupuncture.

    Anyway, I just wanted to post that possible discovery to see if anyone else has tried enzymes or to see if anyone else wants to try it to see if it helps. I don’t mean this to help get rid of C. Diff, but to help with the disaster of the GI system we are left with after C. Diff.

    I’m grateful for this site. Doctors don’t know ANYTHING about C. Diff. I was also surprised that state health departments don’t know anything about it (trust me, I’ve called them). It’s so nice to hear that I’m not crazy, and there are others going through exactly what I’m going through.

  57. Gretta Small says:

    Mary J., can you be more specific in identifying the Whole Foods multivitamin with enzymes that you are taking? There is no Whole Foods store in or near the tiny town where I live, and I will have to rely on mail-order purchase. Thanks for your help.

  58. Mary J. says:

    Hi Gretta,

    I know this sounds strange, but I actually take a prenatal vitamins because they are formulated for people with uneasy stomachs (they really aren’t different from other multivitamins otherwise). I take Rainbow Light Prenatal One. It contains all the enzymes, in addition to herbs/botanicals which are helpful for digestion. Rainbow Light brand vitamins are available on numerous websites.

    Please keep me posted if you decide to try this vitamin or any others with enzymes!

  59. Karen says:

    Hi
    I got C Diff in 2001 after an emergency appendectomy. I was treated with Flagel for months and finally had a negative test. Here’s my question. Since then I’ve been on heart burn medicine but now I”m told I have to get off of it because it’s casing osteopina. I have heart burn all the time now. Not only that but I’ve had muscle pain, weakness, joint pain ….I was told I have fibromyalgia. I don’t know….could I have long term effects from C Diff? People have such prejudice about fibro and I guess I’m hoping it’s not that but something that can be identified and fixed. I struggle every day but I keep going. I also had a bad reaction to Levaquin that resulted in a torn achilles tendon. Some people think that can have long term effects. Of course Dr.’s don’t think so. I just know I feel awful all the time.

  60. brie says:

    I also was diagnosed with cdiff a year after taking clindamycin. I just finished my second round of vanco and I think I am okay, however, now that I am reading all of this, I need to change my diet, as I have been eating sugar, spicy foods, diet coke and coffee. Many on this blog have been saying that IBS can begin 6 months to a year later, so I am now worried that things are too good to be true. I am from Chicago and have heard of fantastic results from fecal transplants! That will be my back up if my cdiff comes back. Also, earlier someone mentioned that having gut issues can mess with your mood- this is horrible to hear as I already am on anxiety meds and have long history with anxiety and depression. Cdiff is the icing on the cake. I take florastor every day and drink lots of kefir as well. Though I am so blessed and thankful that I am not suffering half as bad as most of those who posted, I do live in fear, as i get sick ALL the time and will refuse to take antibiotics now. My body needs to learn how to fight on its own- by the way I completey agree with the comments about doctors and antibiotics. I am only 24. ugghhh.. Any other diet suggestions? I just bought a nutribullet so I can consume more vegetables… good or bad idea? Are all raw foods bad?

  61. Aimee E. says:

    All theses posts are sounding so much like they are from my mouth. I was diagnosed with cdiff in December after a doctor prescribed me 2 rounds of antibiotics for a uti that I didn’t even have. I was in thw worst pains of my life and went to er. I got a call a day later testing me positive for cdiff. I started flagyl for 2 weeks then put onto vancomin for 3 weeks. I am now 3 months free of cdiff. Occasionally I will have ibs but only when I’m worried or stressed. I can eat almost everything except the few things like beans and jelly. I just am in aw of how many people get this horrible bug. I am a very healthy person and only 21. So I know that I have a long road ahead of me. But I really have learned that I cannot control anything that happens to me. So I take one day at a time and try my best to not think about what has happened to me. It’s so nice knowing I’m not the only one.

  62. Gretta Small says:

    Brie, you don’t have to fight infections without antibiotics for your entire life — but anytime somebody wants to prescribe them for you, have them phone your gastroenterologist to “clear” the TYPE of antibiotic they give you. Then double up on the yoghurt you’re eating and NEVER omit your daily probiotic, including AFTER you’ve finished the course of antibiotics given you. I’ve had to take antibiotics twice since acquiring C. diff., and they did NOT trigger a recurrence (although I was plenty nervous, I admit). About raw vegetables. I think it is likely wise to avoid highly fibrous ones (like celery) or those having an indigestible part (like bell peppers with their indigestible “skin”; ditto for corn, peas, beans, with their indigestible covering). Mostly, I think you have to experiment cautiously. I am a vegetarian and a number of vegetables now seem to cause me problems (mostly urgency/diarrhea), including winter squash (even mashed). I’m going to start a food diary so I can more accurately determine what things cause problems. Good luck.

  63. Mary J. says:

    Hi Karen,

    I just wanted to let you know that you are not alone with these symptoms. I had such bad heartburn it sent me to the emergency room because I couldn’t breathe. I FINALLY stopped having heartburn. I also had severe joint and muscle pain. It was so painful to walk and type on the computer. I was fearful that I was developing an autoimmune disorder because I was in my late 20s and to young to have such pain. I didn’t want to do drugs, so I went got massages and had acupuncture. It provided relief and the pain eventually went away. C. Diff is so nasty. I know that it caused all of these problems, but doctor’s don’t know anything about it. It is so frustrating. I was so healthy before C. Diff. I never had any health issues.

    I’m still surprised by all of those of you who said you couldn’t have vegetables. That is the only thing I could eat. Thank goodness I love Indian food because it allowed me to eat delicious food. I also had good luck with Japanese and Middle Eastern or Greek food. I only struggle when I go to “American” restaurants which tend to focus on red meat (which was very hard for me) or fatty sauces and carbs.

    I have also successfully taken antibiotics after c. diff (when there was an extreme need), but took 3 different probiotics and tons of yogurt during and for 3 months after.

    Did anyone get SIBO after C. Diff? I had it 2 years afterwards and my GI specialist said it is very common after something like C. Diff.

    So grateful for this forum.

  64. badbugforsure says:

    The best thing I have ever used for heartburn is Acidophilus. It works almost immediately.

  65. badbugforsure says:

    Wash your hands with hydrogen peroxide full strength. If it burns and turns white, I believe you have C-Diff embedded in your skin cells. Once I did this, and suffered through the burn of the HP, I stopped the C-Diff from getting all over the place. Now, when I put HP on my hands, it does not burn or turn white. Try it out for yourself.

  66. Deb says:

    I was replying to Brenda January 25 at 5:16 AM regarding the reactive arthritis after CDF I though I was never diagnosed I had severe swelling in both hands severe pain a week after being treated for CDF. I actually went to the emergency room I could not use my hands the emergency room doctor thought I was crazy I was having so much pain give me a morphine shot told me to ice my hands and sent me home. All this happened after my first hospitalization with cdiff that I contracted after antibiotic for sinus infection. Since then I’ve been hospitalized the second time with recurrent CDF and was treated with oral Vanco versus the IV Vanco and Flagyl the first hospitalization. The second time I had different infectious doctor and G.I. doctor and they had different ideas of how to treat me. I am 52 years old and I continue to have pain and a little swelling in both hands At times and I did not have this problem before my illness. It has been two months since hospitalization and a tapering dose of oral vanco about two weeks ago and now on Florister for a month twice a day. I plan on getting that fecal transplant by way of a gastric tube in the future with a donor by a family member. All of this over a antibiotic for a chronic sinus infection. I will be at deaths door before I ever taken another antibiotic.

  67. Neverhearthetruthfromthedoctor says:

    I am glad to have found this conversation. I feel like a prisoner to my own body. I have celiac’s disease and contracted C Diff after my doctor gave me very strong antibiotics. I have since has a resurgence of it again. I have taken two rounds of flagyl and thought I was dying. You know what I mean if you have taken it. Flu symptoms for two weeks.

    This has been going on for almost three years. I am down to a vegan gluten free diet and there are too many days that I bloat, have horrible gas (ain’t nice for a southern belle and just in general feel like crap! I think it is complicating my thyroid issues and fibromyalgia…just adding fatigue. I push through the days and try to do what I can at work and at home and exercise. My doctor just pushes pills at me. Antispasmodics…not good. I am taking Garden of Life Digestive Enzymes and it is helping some. I find that symptoms are flaring now when I eat chocolate and sugar…my last two indulgences! it’s like a bad dream…my heating pad at night has moved from my neck to my abdomen…I am 46 and this sucks!

    I am glad to know I am not the only one. It’s wierd. I have lost weight over the past year but my stomach looks like I am three months pregnant on the bad days. The CDC, Mayo Clinic, WebMD….no one has any answers. I am just taking it one day at a time and if I have to be in public (shopping with my girls) then I just don’t eat or take the antispasmodics. It just makes me weary and tired.

  68. Judy says:

    My husband has C-diff. He had a sinus infection 6 weeks ago, now after 2 series of Flagyl that didn’t work. He is now taking Vancomycin, which isn’t working that well. It is so comforting and great to read all these messages of people who since Duane has expressed their approaches with failures and some successes, we know now it will be a long journey… All the foods help me figure out what my husband might be able to eat. Also, the warning about how long the spores can live. You are all right that not any Dr. tells us to use Probotics along with a drug they prescribe to us. Perhaps if we knew this outcome of that Sinus infection script, we would have increased the Activia to more and not contract the C-diff.
    Thanks to all for their messages. Keep us posted. I too believe the CDC should be informed and take this matter seriously.

  69. SarahTea says:

    Darlene and everyone else out there: Hang in there! Don’t give up! My mother suffered through various physical illnesses throughout my childhood, and it means so much to me that she stayed alive and kept doing what she could to raise me, even though I know it must have been so hard. Please keep doing what you can to survive and overcome. It means so much!

    I contracted C.Diff at age 26, confirmed by medical tests. After several weeks of antibiotics, it still was a problem. Finally, I took large doses of probiotics, the strongest I could find, for multiple weeks. It finally went away, a couple of months after it came. I have had chronic abdominal pain for years, including long before I got c.Diff. So I don’t know if I have any post c.diff symptoms or not. However, I have recently begun reacting badly to milk products, and found this site while checking if there can be a connection. My original chronic pain also may have been caused by heavy use of antibiotics to treat other illnesses when I was a child, including lyme disease. The more I learn about these things, the more I come to the conclusion that the antibiotics kept me alive thus far, but it is also the antibiotics, and not anything directly related to c.diff or lyme disease that actually caused the daily abdominal pain and other issues I experience. Just wanted to share my experience, hope it helps. The doctors believe it was a latent response to the antibiotics that got rid of my c. Diff. (getting worse, and then better). I believe it was the probiotics. Decide what you will… I’d say take both. The probiotic I took contained “20 billion colony forming units” per pill, and I think I was taking 8 pills a day at first, tapering down over time. That is much higher than the standard dose, but my gastroenterologist wasn’t worried. I bought them at a healthy food store. (still don’t know any solutions to my chronic problems, but colonoscopy confirmed the lab test that said my c. Diff was gone, and lab test proved I had it originally.)

  70. Donna says:

    I had cliff 5 years ago. I was soooo sick. I’m a RN and I have never been that. sick in my life. I tried Flagyl AND then vanco and if all cams back as soon as I stopped the antibiotics. I read, read, and read more and decided to do the fecal transplant via NG ( it starts at the top of thd GI tract). I was hirribly SICK for 5 months and then felt normal for ghe first time exactly 12 hours after my transplant and have not had ONE problem since. Not IBS, nothing! Swallow your pride and do this if the antibiotics don’t work. It makes sense. I wish more hospitals welcomed this treatment. It’s a cure! Good luck to all.

  71. Donna says:

    Wow. Sorry about the typos. I hate auto correct and I’m on my cell phone. I should have proofed it first. But anyway, I truly believe transplants can save lives lost to cdiff . There is a clinic in Deluth if you want to check it out.

  72. badbugforsure says:

    I just want to tell everyone that the most relief I have found from the pain and fatigue of C-Diff is from eating Kim-Chi. Dr. Mercola says that fermented foods have much more probiotics than any pill that you can take. The best tasting Kim Chi I have found is Korean from a company called Ocinet. Believe me, it will help!

  73. April says:

    I know how you guys feel I just turned 30 in April and I guess I have had C Diff sence Oct 2012 but I just found out I had it in march. I was getting my 9 yr old daughter ready for school until I felt dizzy and I fanted and had a mild sesure and latter that day I had maltable axity attacts and ended up in the hospital and they had gottin all my records from the hospital I usually goto and they did more test on me and not to remind u I felt like a lab rat but now after all the meds for the C Diff and pain meds it did not work so if anyone has any ideas please let me know I am really scared and between my husband and I we have 6 kids that need both of us. Thank you

  74. Jen says:

    Thank goodness for this site! I have a history of bad sinus infections and had sinus surgery Nov. 2010. The surgery was wonderful and changed my life! Then, I had my daughter Aug. 2013. Again, my daughter is wonderful and also changed my life, but it was as if pregnancy caused my body to reset itself. I had my first sinus infection since the surgery Feb. 2013 and another infection Mar. 2013 and my doctor prescribed Augmentin both times. Before the 2nd infection/Rx for Augmentin, I thought I got the stomach flu, but I think that was actually the beginning of the c-diff…lots of stomach cramping, diarrhea, etc… The cramping, diarrhea, and bowel urges got so bad (after 4-6 weeks) that I eventually went to an urgent care that recommended I see a GI. The GI said he would treat me for c-diff even if I had a negative test due to the antibiotic history and symptoms. I’ve been taking Metronidazole (generic flagyl) 3x a day for about a week and the cramping has definitely improved, but I believe I have developed reactive arthritis. Doctors say that it’s not a side effect of the medication, so it must be par for the course for some peoplle with c-diff. It started with my right shoulder (I could not even lift my arm) and has now moved to my right wrist, right knee, left index finger, and left elbow. Totally random and very painful! I have found that motrin is the only med that has worked to decrease the joint pain. After I finish taking the antibiotics, I will start taking probiotics and will also investigate alternative therapies. I’m also concerned about giving this nasty bug to my husband and 8 month old daughter. It’s miserable!

  75. Carol says:

    My Mother came down with a raging case of C-Diff following ankle surgery. 2 wks on Flagyl made her even sicker, then she was switched to Vancomycin. We added drops of Oil of Oregano to her liquids after reading about it working for C-Diff and her WBC went from 19,000 to 15,000 to 11,000, to 8,000 (normal) in 4 days. She did not want any more of the Oil of Oregano afterwards and then the C-Diff came roaring back 1 week later. We got her to a Dr who would do the Fecal transplant, but he was going to make her wait a month and a half (he said he doesn’t make money doing it…..so he only does 1 procedure per week!!!) Sadly, she passed away that same day in the evening. She was a well 86 year old but the Drs just seemed to write her off !!!!!!!!!!!!!!!!!!! I will never forget what C-Diff did to my Mom and spread the word about Oil of Oregano and Fecal transplants.

  76. vi says:

    I tested pisitive for cdiff i 2006 and never been the same. There was also suspected giardia at the same time, thought to have bee spread by a child. Double wham to my system. I took flagyl and then albendazole for giardia, but have since had symptoms and many intolerances to foods and getting worse. There is milk intolerance, anything fermented or likely to have mold is intolerable, as well as high histamine foods. I am 25 pounds underweight and never enjoy eating due to the effects of either conztipatio or diarrhea. The diarrhea seems like a histamine response with tachycardia, anxiety, and nasal symptoms plus insomnia. I am totally convinced that enzymes were destroyed and I can no longer process food correctly. No health insurance and no money for expensive meds or tests so I try to research and watch what I eat. My biggest mistake was not taking my grand baby’s poop when shd was a baby and doing my own enema or suppository.

  77. RN says:

    Hello to all,

    I am a Registered Nurse who contracted c diff while working in the ICU in September of 2012 after having been on cipro for an upper respiratory infection. Being a nurse I knew from the beginning I had c diff as the smell is something we nurses know all too well. Over the span of 7-8 months I have completed 4 rounds of flagyl and 2 rounds of vancomycin. I knew after the 2nd round of abx that the medications weren’t going to work and that I was in trouble but the only way I could continue to work and function was to continue the antibiotics. While the antibiotics didn’t get rid of the c diff they did get rid of the symptoms while I was on the antibiotics, however, within 3 days of stopping the medications I would relapse resulting in a return of my symptoms (diarrhea, abd pain/cramping, low grade temp, etc.). 6 rounds of antibiotics was it for me and so I did a lot of research (and praying) and found that FECAL TRANSPLANT was what I needed and so I wasted no time and performed my own HOME FECAL TRANSPLANT 1 week ago using donor stool from my wife. SO FAR SO GOOD and I am optimistic as hell about my prognosis.

    I will cont to give updates to my health status every few days and will try to answer any and all questions that I can.

  78. CBgone says:

    Hello RN, and to all out there who suffer from this horrid illness, and those who love us. I was just released from a 9 day hospital stay: they dx C Diff & pancolitis. Today is first day w/o fever since Feb 1, 2013. Onset of symptoms were then, I thought it was food poisoning but it didn’t go away. I tested neg for c diff back in mid-Feb. UTI mid-march w/ Cipro, then a colonoscopy right after the Cipro finished. Then horrible frequent diarrhea (15-20 per day, similar to the onset of illness, which then waxed/waned for months). I was told by the hospital GI doc that the Cipro and the colon prep caused the c diff. Why are there no warnings about this?!!! I could have done something to help prevent, like NO Cipro and loading up on probiotics. I was started on Flagyl (well, first like 3-4 different other IV antibiotics because my temp was 103.7, BP dangerously low setting off alarms, and the ER docs started bunches of antibiotics before dx was made yet), then switched to Dificid day 3. I am hopeful it will work, (no stooling past two days) but want to get fecal transplant if recurs, or maybe even w/o relapse. I don’t see the GI for a few weeks yet. So my question to you Mr. RN is how did you do it yourself? I am so glad to hear you are better!!!! Now you can get your life back!

  79. Jr says:

    RN

    can you please help me I Was supposed to have the fecal transplant done but then was to by my Dr that the FDA has banned this..at least if you get it done through a Dr…can you give me the step by step instructions on how you did the home transplant. I am ready to do this but can’t find the Instructions on how to do it…so tired of c diff and about to lose my job of 21 years…. Thanks

  80. Rebekah says:

    I am in the same boat. I was actually trying to find why I am so tired, anxious, and bloated and it hit me that the bacteria could be back. I had C-Diff for seven weeks following a round of antibiotics for a sinus infection. I have never been so sick in my whole life. I felt like I was dying inside. I ride my bike to work and there were some days that I wished I would get hit by a car. When I received the positive results for C-Diff I cried because I was getting so depressed. I felt like I was a walking toxin and once I felt better I had to apologize to anyone and everyone close to me for being so mean while I was sick. Nobody understands unless they have had it before.
    Now, I have been fine for a few months but stressed out lately with school, work, and family. I think this stress may have lowered my immune system just enough for the bacteria to take over again. My stomach has been tossing and turning, I feel nausea, my bike time has been slower, and I am so tired that I can’t keep my eyes open.
    I am going to try the bland diet and let you guys know what happens. I am making my own yogurt today and as of this morning I am trying to cut out coffee

  81. Jr says:

    To RN can you give me Instructions on how to do the transplant. Do you need to cleanse yourself out before you do the transplant like a colonoscopy?

  82. Kimberly says:

    Hi All,

    Thank you first to Duane for starting this blog.

    Have a c. diff. infection, for about a year now. On 4th treatment. 1st was flagyl, 2nd and 3rd were vancomycin, now on dificid, and it doesn’t seem to be working. Got the c diff after a visit to a restaurant while traveling for work. I had a turkey club sandwich for lunch and that night at the hotel I had green bloody diarrhea. Thought it was my gall bladder acting up. I did start to get a bit better over the next few days, then worse, and finally went to a GI. This last bout with the diarrhea was bad, lots of blood, so I expect the next step will be the fecal implant.

    Important info:
    The FDA is reporting an increased risk of c diff problems with the use of proton pump inhibitors sold over the counter for acid reflux. Reduced acid in the stomach increases the chance that the spores will survive.
    The more resistant strains of c diff are a result of antibiotic use, but not all antibiotics cause c diff. If you have a c diff infection you may have been exposed to c diff months ago and it is just hanging out waiting for the right conditions to reproduce.
    It is harder to get rid of c diff if you have diverticuli in your colon. After my second treatment with vancomycin I was getting better and then got the flu, with a fever. When my fever reached 102 I suddenly had severe diarrhea. My mother had the same flu, same symptoms, except no diarrhea. I probably still had some spores in the diverticuli.
    Spores can survive in the environment for months. This bacteria is in the food chain. There have been a few studies that show the c diff strain found in humans is also in beef, pork, veal, turkey, sausage etc… and heating to the recommended temps does not kill the spores.
    There are different strains of c diff. The hypervirulent strain of c diff is producing more of the toxins that cause the nasty symptoms and our bodies can’t deal with it. There is medication (Cholestyramin) that can bind the toxins, but it cannot be taken with antibiotics.
    When sanitizing with a bleach solution be aware that not all bleach is created equal. Look at the label, germicidal bleach (6.15% or more hypochlorite), a laundry bleach (6.0% hypochlorite), and discounted bleach (5.25% or less hypochlorite). Follow the label, and make it fresh daily, the concentration of bleach in the water will go down over time.
    Found a reference to the following working for someone, “We began with digestive enzymes. Colliodal silver. Alkalinzing pill, oil of oregano and peppermint.” Claims it took care of it without antibiotics. I might try that before the fecal implant.
    And, mega doses of probiotics can be dangerous and lead to infection of the blood, so be careful.

    Finally – to those who are reporting they have fibromyalgia or reactive arthritis, I have had fibromyalgia for 25 years. If you think you have it or reactive arthritis go see a specialist. It is critical that someone who knows the disease diagnose it. Fibromyalgia is believed to be passed down in the family, but they don’t have the gene identified yet. They are working on a biomarker that will help diagnose it. It is always there and becomes active when the body can’t handle a stressful event. Any type of stress can activate it, mental, emotional or physical. It is not your imagination, but it might be in your head, the disease is related to how efficiently nerve cells in your brain recycle the neurotransmitter serotonin.

    I know this was a book, but it is important. Good luck everyone and hang in there. May you and all beings live in peace.

  83. Lana says:

    Greta , do you know what antibiotic you had success with post C diff for your dental work? Thanks for any input anyone has about this!

  84. Craig H. says:

    Hi All,
    I never even heard of C-Diff until July 2012, that’s when my world/life changed for the worst. I was 41 at the time and was put on an antibiotic for possible “Lyme disease” before any test results came back to my stupid doctor (I ended up testing negative for it). 2 weeks later I was put on another powerful antibiotic due to a finger cut (my doctor told me if I didn’t take it I’d end up with a serious finger infection, the ER that treated me for C-Diff later confirmed it wasn’t the case at all). After being on 2 different antibiotics within 2 weeks of each other I started feeling ill and thinking it was the flu. I went back to the same doctor again who said it was probably a bug, nothing more. Next thing you know I was having severe water stools, not able to eat, severe stomach pains, couldn’t sleep etc. My parents rushed me to the ER where they tested and diagnosed me with the C-Diff, They admitted me and I was hospitalized for a week on IV treatments, my vitals were bad, I nearly died that’s how bad it was. To make things worse I have had IBS since I was 17 and it was usually under control with meds I take. Since being released from the hospital and cured of the C-Diff my IBS has worsened 10 fold. I can’t work (was let go of job), have constant cramping and bad bowel movements. My GI doctor has tried me on different probiotics and meds but they only helped a little. I am told I may always be like this now all because of my stupid PCP doctor and antibiotics causing the C-Diff. I am currently pursuing a lawsuit against him but who knows what good it will do so I feel everyone’s pain on here.

  85. Carey Valentine says:

    Hi everyone, after reading your stories I have to comment and commend all of you for dealing with it the best you can. I’m also a Cdiff survivor, struggling but surviving.

    D. All of the above for me with few exceptions. I was prescribed a broad spectrum antibiotic at an “Insta-Care” facility for what turned out to be a ruptured cyst/female problem. I had severe D 4 days after i started them and my regular dr. immediately ordered a fecal test and then put me on vanko when results came back cdiff. He called me with the results and asked what anti biotic I was on. I told him & he said “Thats what caused this, stop taking it immediately & go get this vanko Rx filled & eat a yogurt every day. I get Rx & Pharmacist says “DO NOT miss a dose! This is last line of defense & if bad bacteria are allowed to grow it could come back & you’ll become resistant, which means it’s an IV drip in hospital after that.” I think I turned white right then & there. I immediately googled cDiff & worked myself into a high anxiety frenzy over how it could EASilY kill me. Of course I had a relapse after my first round of vanko and was sick from oct ’12 thru New Years. I had My OB/GYN suggest a hysterectomy for the cyst/female issues and was mulling it over when I had another attack: in Vegas AT&T daughters cheer competition. So bad I had to leave and miss most of it and the minute it was over my husband put me in the car and drove me back home to Salt lake so I could see the Dr. Next day I test neg for CDiff even though I have all same issues & smell. I tell my nurse friend about it & she says go see her Dr. He does a fecal matter transplant all the time. SAY What? I go see this “Gut Whisperer”
    As he calls himself only to get his NLP who tests me for everything to rule out anything else and she says I’ve got IBS now because of the CDiff . I tell her I’ve decided to get hysterectomy to get rid of that whole issue and she agrees and says my thyroid’s off (which is hypo & has never been a regulated dose since i had it diagnosed in 1989. I see my regular Dr. for the new thyroid Rx, tell him what’s going on & he says ok to surgery & that the Cdiffs gone & Fecal matter transplants are for severe cases, that “I’m fine now”. I persist with my anxiety riddled concerns and he tells me to “Stop reading” because I’m scaring myself. Sorry but ignorance is bliss except for when it comes to C-diff because then it can be death, literally.

    I get the surgery & OB gives me vanko for “assurance” as he would’ve normally prescribed another antibiotic. 2 weeks later I get UTI & he gives me a sulphurbased Rx. I call regular Dr. concerned & he said that’s fine & the vanko did nothing for me as it sits in the colon & isn’t released “systemically”.

    Blah, blah, Blah, everyday my guts hurt & I’m within days of getting a blender at a thrift store, some saline solution & my husbands next movement to do my own enema if I can’t get it with a Dr.

  86. Gretta says:

    Have any of you heard of the use of turmeric (an Asian spice related to ginger) in treating C. difficile? Turmeric is the bright yellow spice that gives curry powder and hot-dog mustard their color. According to a report from a member of ACG (American College of Gastroenterology), there are currently 40 studies underway. I first ran onto a study from So. California a few years ago regarding use of the spice in food and its effect on C. difficile. A Google search for “turmeric and C. difficile” will turn up a host of articles suggesting turmeric can benefit all sorts of disorders, from Alzheimer’s disease to malignant melanoma. I’m always suspicious of “cure-alls,” but it would seem a good many respected scientists are sufficiently intrigued to investigate. One can obtain the spice in capsules or simply add it to soups and stews, along with black pepper (a combination apparently routinely used in India).

  87. Debra says:

    I first got C.diff with one relapse four years ago. I took Vancomycin both times because I was actually taking Flagyl for something else when I first got it. I had also taken antibiotics before dental treatment because of mitral valve prolapse. (They no longer advise that.) I didn’t feel as sick as most of the writers on this site, and was left with only minor IBS symptoms, so I guess I must be lucky. However I contracted c.diff again six months ago and I wasn’t even on antiobiotics. I rarely use public restrooms, so I’m thinking that maybe I got in from my infant granddaughter who had antibiotic associated diarrhea and they say 50% of babies are born with c.diff but get rid of it on their own eventually.. She was never tested and she got over her diarrhea. I took Vanco this time again, but started on Florastor probiotics before I started taking the vanco, knowing it’s necessary to be on probiotics before, during, and after treatment. I also take Culturelle or Align. I think I will be taking these probiotics forever because I am so paranoid of getting this again. It’s one thing to get it while being on antibiotics, but quite another to get it out of the blue. I still have some IBS issues, but not too bad, but like all of you, when you get an episode of diarhhea, panic sets in. I take Immodium occasionally and that really slows things down. (You can’t take Immodium while having c.diff, though.) I bought a good book on C.diff on Amazon.com which made me feel a lot better emotionally – “Clostridium difficile: A Patient’s Guide” by Christopher M. O’Neal and Raf Rizk. It really covered everything. People who haven’t had this stupid disease just don’t get it. For me, the fear is worse than the symptoms were, but after all the research I’ve done, I know how bad it can get. My best advice is good PROBIOTICS. I hate to spend the money on them, but am used to it now. Yogurt, too.

  88. Hi everyone. I posted this almost four years ago, and it still amazes me how many people find this post and eventually email me about it. I’m glad that people on the internet have been able to find some help via this post, and many of the helpful comments people have posted here as well.

    I did an update to the original content to let people know how my personal situation is – feel free to read the article again and see my update at the bottom. I’d also appreciate it if people who found this post useful can share it on Facebook, Twitter or Google+ so that others can hopefully find it as well.

    If you’ve recovered from your c. diff. as well since your last comment, feel free to drop a line here and let others know.

    Thanks,
    Duane

  89. Tata says:

    Sounds like you have had a ruff time. Im a nurse and picked up c diff from the hospital. i had surgery and then had antibiotics and believe i was already carrying cdiff. Unfortunately I am on my second round of flagyl 500mg four times a day. I hope it works. After this I am going to try this stuff called olive leaf extract. I will keep you posted and let you know if it works. I have read some really good medical journals about it.

  90. Doris says:

    My daughter went to the hospital to get her eye washed out from something that was lodged in it. She got sick and the doctor and GI specialist tested her for a number of things and c diff came back negative (the Canadian labs where I leave only do the cheap test that will only show up 75% of the c diff cases). The GI did a colonoscopy and decided she had ulcerative colitis. For ten months she took the meds for UC but nothing worked and we kept telling him that there had to be something else going on because she lost weight even on prednisone. Ten months later he finally tested again (after begging) for a number of things and it came back that she had been misdiagnosed and had c diff – for 10 months! Flagyl for three weeks was like night and day and then a month later she got c diff back. Flaygl again and then it didn’t return. It has been 16 months since the last dose of flagyl and she is slowly getting better but with many ups and downs. She lost 30 pounds and has difficulty gaining the weight and keeping it on. She will gain 5 pounds and then have pain and diarrhea and looses the 5 pounds. If we look day to day we get very discouraged and if we look back to last year we are encouraged. Thank you for your update of July 31, 2013. It is good to hear that the diarrhea slowly went away. How long did you have c diff before you were diagnosed and do you know of anyone that has had it for almost a year? Does anyone know of the long term effects of c diff?

  91. Kimberly says:

    Hi All,

    Thought I should give you an update. Going on 1 year and 3 months since I first got c diff. After the treatment with dificid (see May 28, 2013 entry), which did not work, and cost me $200 for the co-pay, my GI doctor did not believe I was still having problems from the c diff. I was having bloody stools the entire time I was on the drug. I had to beg for another stool sample. Of course that came back positive. The doctor prescribed another round of vancomycin, 2,000 mg per day for 2 months, then tapper off. I am still on 500 mg per day, for another week. It took 2 months for the bloody stool to stop. Still have loose stools. I am able to eat a bit more and don’t always have to run to the toilet after eating. Developed lactose intolerance, so can’t have dairy. Have done a bit of research and have some tips. Stay off sugar, it seems to provide fuel for the bacteria. The best place to go for recurrent c diff infection is either Mayo Clinic in MN, or Johns Hopkins in Boston. There is a doctor at each that specializes in these cases. If the current round of antibiotics does not work I am headed to Mayo to see Dr. Darrell Pardi. The research has shown that about 40% of people with c diff also have VRE (vancomycin-resistant enterococci). Peroxide will also kill c diff. I spray the toilet every time. Wash, wash, wash, clean, clean, clean. The spores can stay viable for a long time and are not killed by heat or cold.

    To support the healing it is very important to use supplements that are specific for healing and digestion. The following are what I am taking and it seems to be helping: RF Plus and Similase by Integrative Therapeutics, L-Glutamine (1,000 mg) and Lactobacillus sporogenes (1.5 billion CFU) by Pure Encapsulations, SerraGold by Enzymedica, Choline citrate (1,300 mg.) by Perque (1 tsp. per day diluted in juice), and Bio-active Silver Hydrosol by Sovereign Silver.

    Oh – and I fired my GI doctor today.

    Health and happiness!

  92. vi says:

    I got cdiff in 2006, and been messed up ever since. Before it, I never had stomach trouble and could eat anything. Now I am lactose intolerant and seem to react to high histamine foods. Anxiety is a problem and now pain with being underweight. Kefir seems to help a little, but I have no health insurance and have just given up and going to apply for disability. The cdiff diarrhea stopped after flagyl but it must have destroyed the flora and enyme production permanently, unless it triggered some other condition.

  93. Lisa says:

    Wow! These posts are both held I and scary at the same time. I was hospitalized last week with what I thought was a Crohns flare up. I tested positive for c diff and have been on Flagyl, Pred and Vanco for a few days. I have no pain or fever. A little nausea, but my biggest worry right now is the diarrhea. I still have a bit and it’s mostly mucous, sometimes with blood speckled in (normal for me with my Crohns). I’m basically a basket case and severely depressed. I’m scared of infecting my kids, scared of testing positive again and pretty much terrified of germs. I’m feeling a little better but I’m having a hard time figuring out which part of this is Crohns and which is c diff. I’m not worried about my tummy ever being the same again, I’m more worried about how to get rid of this infection for good.

  94. Ruth says:

    Hi,
    I’ll try to make this short, but my nightmare has been a long one… I got c diff after childbirth 20 years ago. My placenta retained & despite my complaints to my OB/GYN of 2 weeks of diarrhea & passing placenta, he just wrote me 2 back to back scrips of antibiotics and sent me to the lab to leave a stool specimen. Unfortunately, his nurse ordered the wrong test, he said he intended a c diff to be done, but he never corrected it. So, 6 weeks after having my daughter, I was throwing up bile, had horrible diarrhea, & a high white blood cell count & put in the hospital. 2 days after being there he finally performed a D & C on me to remove the remaining placenta, but It was too late. Placenta is a living tissue so it had rotted my uterus. So 2 days later when I said I felt like I was on fire inside, he did exploratory surgery resulting in a hysterectomy & his having to scrub my insides w/several liters of saline & surgical sponges to remove gangrene from my abdomen. A week later I continued to have diarrhea, a high white blood cell count & a fever for days that threatened brain damage, in spite of my body being fully packed in ice. My OB/GYN was perplexed so he brought in several physicians to consult with. They were getting ready to schedule surgery to remove all or part of my intestines & anything else that looked like it was infected (from the placenta he hadn’t removed via a simple d&c in the first place!) Anyway, one of the doctors noticed the c diff test (my OB’s nurse ordered wrong) still had never been done. It was finally done, it was positive, surgery was cancelled, & my already high doses of antibiotics were bumped up to 8: both oral & IV, in triple & quadruple doses. I slowly began to improve when about a week later I got severe thrush in my mouth and reactive arthritis in all my joints from the c diff toxin having gone too long. The thrush was painfully obnoxious, but my joints were hurting terribly & I could barely move! The next day it started to get hard to breathe, doc’s checked but couldn’t find anything wrong but 2 days later my chest, left clavicle & my back at rib area hurt horribly with every breath & I could barely breathe! The doc on-call ignored me & told the nurse that nothing else could go wrong, I was just paranoid since I’d been through so much. Luckily the nurse went over her head & called in the internal med doctor! He had me taken downstairs to the nuclear lab where they found 3 of my lung lobes completely full of blod clots & the 4th lobe over half full; I barely had any blood flow at that point. They sent me back up to ICU & added heparin & new pain med to my already numerous antibiotics. I will never forget the pain I endured over the next few days, I thought the abdominal & joint infections, were bad, but the blood clot pain was worse than anything I could have imagined. For the 1st time in my life I wanted to die & remember telling my husband it was time to let me go. I couldn’t lay or sit without horrendous pain, i had to kneel on my bed, any pressure on my upper body was more than i could handle. I wasn’t allowed to move & due to the c diff, I still wasn’t allowed to eat. I’d had long & hard labors w/my 4 children, but even the pain when the blood clots began breaking up a couple days later was bad. When I was in the clear I was sent back to a normal room to myself, I got to eat real food, not just IV fluids, I had been in the hospital for over a month by then. 2 weeks later I got to go home, getting to see my 2 boys ages 9 & 6 and my 2 girls 3 yrs & the baby, who was 3 months by then, was absolutely wonderful!
    I was in bed for about 6 months, back to work in 10. I worked hard to get life back to what it once was, but in hind sight, I wish I’d never gone back to work. I probably could have got SSI. Over the next 7 yrs I had 3 surgeries to remove abdominal adhesions & 1 to remove my tubes & ovaries which my OB/GYN sewed to my sides during my hysterectomy to keep from dangling in the infection/gangrene. While attempting to remove them, my new GYN couldn’t find the left side so he & a bowel specialist removed my colon, laid it on a surgical table & worked their way through it inch by inch. They finally found it engulfed in the lower part of my colon & carefully carved it out. Unfortunately, it took over 3 years for any bowel activity not to bring tears to my eyes & only 15 minutes for food to cause me diarrhea every time I ate. For years there were very few things I could eat. I have a bladder condition, interstitial cystitis, that makes me feel like I have a bladder infection all day, everyday of my life & like my colon, brings tears to my eyes almost everyday. I went through several painful bladder dilatation’s, lots of stinky DMSO injections & trial medications that caused hair loss & liver malfunction, just trying to find some relief. The arthritis specialist said the reactive arthritis would only last a year. After a year he said maybe up to 3 & after 3 yrs, he acted as though I was crazy or lying, just like he acted with my complaints of an all over body pain that he couldn’t figure out… Now we know it’s fibromyalgia, but not much was known about it 20 years ago. In spite of all the issues, pain & no energy, I still had to raise 4 children who were all active in school, sports, & friends, & my husband who had his own business that kept him out of town during the week most of the time.
    Three years ago I fell at work so in addition to all the above, I now have added hip, back, & neck injuries, carpal tunnel & sciatic nerve damage causing neuropothy in my feet. Most days each issue brings just moderate pain, but add them all up & I’m a basket case who can’t think or remember well most of the time & never have enough energy without pain medication & caffine to do anything constructive or fun. I try not to complain too much or be a downer, I use to be a positive, happy & smiley person, but now I’m so blah my family gets frustrated with me. I hurt physically & emotionally, it’s difficult to get up, eat, be constructive or sleep. Due to my colon/digestive issues I struggled to keep weight on until I went on antidepressants & lyrica about a year ago. I tried to work for a year & a half after I fell, but I managed an accounting software program, constantly sitting &/or training personnel so it required too much sitting & or standing for long periods of time. I’ve applied for SS disability but been turned down 3 times. I’m appealing (or the company helping me is for me) but wish I knew how some people get SSI for less their 1st time applying. It’s frightening, we no longer have medical insurance or my income, my husband had to have 2 heart surgeries a few yrs ago nor is his business doing well due to the economy. We’ve had several more unfortunate things happen this last few years but that’s about as much as I should include here or I ay pop!!!

  95. Kat says:

    Please see studies re. Saccharomyces Boulardii and c-diff on NIH website also available on PLOS. Sacchromyces is a probiotic not usually found in common probiotics (some have it but You have to check), I will post another study done in Canada on BIO-K hi potency Probiotic shots (liquid) and c-diff. Also Oil of Oregano. I’m also using lots of garlic, local raw, unpasteurized honey (known to be effective with H_Pylori), and ys organic bee pollen/royal jelly/ just for good measure…

    Western medicine just wants to throw more toxic drugs at you, when that is what caused it in the first place, and disavow the potential of alternative medicine. I am taking the Flagyl along with these, even tho the probiotics may be invalidated by the ab’s. I think the above measures are particularly important when done with the ab’s to prevent a reoccurrence.

  96. Em says:

    After a hospital stay in August I also was diagnosed with C Diff. After two weeks of Flagyl I was told the medicine had done nothing as well. I then had two weeks of vancomycin and was told I was totally clear of C Diff. I was finally able to return to my childcare job after just being hired a week before I was hospitalized the first time. I have missed a total of seven weeks of work so far due to C Diff. This past weekend I began to have diarrhea again, I also tested positive for strep throat. I am still waiting on the results of my most recent stool sample. I wish I could just finally move on and be a healthy 19 year old girl. Although I have a feeling that I am going to be on another two weeks of vancomycin. It’s good to know I’m not the only one having a horrible experience.

  97. Concerned Mom says:

    My 12 year old daughter is currently undergoing treatment for Leukemia ALL. She has had 3 bouts of C-Diff in the last year with the latest being diagnosed in October. Usually she’s back to her old self 5 days into her 10 day Flagyl course but this time something is different.

    This all started with a bug my husband and I caught while on a family vacation in Sept. Our daughter then caught it and had very watery stools. It ran its course and disappeared within a week but although the stools started to harden she never felt right in her tummy. This coniued for about two more weeks. since she’s had C-Diff before I know what the symptoms are. she didnt have her usual fever, mucous looking stool or cdiff smell or severe pain. but she was feeling icky everday. I asked the asked her oncologist to run some tests and what do know, it came back positive for C- Diff. We are now 1 month since finishing Flagyl and the poor kid still feels icky on a daily basis. Stools are soft but not runny. She says she’s “burpy” and her tummy hurts higher up…acid feeling. I’m giving her probiotics and L-Glutamine to help heal her GI tract…we used it with success to prevent mouth sores during intense chemo. I’ve just started this about a week ago and I’m hoping to see some change before her next chemo appointment. I’ve stopped with ant acids except for tums and am not giving her milk. I am recording everything to get an idea of what is working and what isn’t. This kid has been through so much and still has another 1.5 years of treatment for her Leukemia…she doesn’t need any complications of CDiff too.

    Have any of you had these mild lingering effects? I am bleaching and we’re hand washing freaks since she is considered immuno compromised.

  98. mydnis says:

    I was diagnosed in August 2013 while visiting my boyfriend in the hospital after taking an antibiotic I caught it and I ended up in hospital within a week for 2 weeks. I felt better after taking flagyl but then got worse and was given vancomycin 4 times a day for 10 days. now that didn’t work as i tested positive and I’m starting to get my symptoms back,loss of appetite; diarrea; mucous and blood in stool. my boyfriend has just received a bone marrow transplant and I can’t be around him for fear he will catch it. will we ever be able to be together again? the way this sounds i will always have to wonder if i it will come back again for the rest of my life and of course he will always have to deal with leukemia.

  99. Rcass says:

    Im sitting in thehospital reading all these storys bcause my husband just found out that he has cdiff. Has anyone ever ben told that they have gastropersis & it is realy cdiff? Or is possible to have cdiff for a long amount of time?

  100. Michael says:

    When I was 23 I began having intestinal issues. The symptoms began very slowly and progressed over a year until I had colonoscopy. The colonoscopy revealed white patches in the colon wall indicative of C-Diff. What would later become very interesting to me was that the gastroenterologist followed up the colonscopy with a stool test, not for the C-diff bacterium, but its metabolites Toxin A and Toxin B, both of which were positive.

    I responded well to Flagyl and over about 6 months my intestines healed and I was essentially back to normal.

    Years later I would become stricken with illness again. Going into my thirties I was a mess. One of the symptoms I was diagnosed with was IBS, which was as practically as bad as the C-Diff, but I clearly did not have C-Diff. Other diagnoses, such Crohns and Colitis, were also ruled out. Nevertheless, the IBS was so terrible that I did not think I could continue. I was hitting the bathroom 4-5 times a day and was totally exhausted. The IBS developed slowly and its peak lasted probably 2 or so years. Everyday I was sick, tired and worn out and doing all the things everyone mentions here.

    Today, my intestines feel 100% back to normal.

    What I found out that healed me was that I had a mold problem inside my home. Due to an improperly installed deck, moisture had penetrated the siding in a way that was hidden and allowed for mold growth within the building envelope. When I first discovered the idea that mold was making me sick I was absolutely incredulous and did not believe it. I personally never heard of mold making somebody sick and apparently my Doctors, both my primary care and allergist (tested negatively for all allergies except dust mites), hadn’t either. I was essentially laughed out of doctors offices.

    I bring this up because the mechanisms that made me sick from mold, I believe, are the same mechanisms we are seeing in post infection IBS. I learned all this primarily from books and the work Dr. Ritchie Shoemaker, but I also have spent 100s of hours reading scientific papers from Pubmed and Science Direct to confirm that work. I shared what I had learned with my ENT at ohio state medical center who quickly took an interest in my case and quickly confirmed that my research was exactly what he was studying and what he was learning. He assured me that I was correct and the mold had done to me exactly what Shoemaker describes.

    Essentially, what appears to happen is that in susceptible individuals, those with particular genetics, the Toxins from C-Diff or other infections, or the environment (air, food or water) can accumalate and recirculate throughout the body.Unlike healthy individuals, the immune system does not properly recognize these toxins as antigens and does not produce the antibodies that flag the toxins for immediate excretion. The result is the toxins go through a process called hepatic recirculation where they are dumped into the intestinal track and into the colon and then readsorbed by the body leading to a continuous cycle of illness. The toxins trigger an innate immune response by binding to Toll Like Receptors. This immune response leads to systemic inflammatory disease (RA, Fibromyalgia, IBS etc…). Furthermore, if I my research is correct, the inflammatory process reduces the rythmic motion of both the cilia in the sinuses and the villi of the intestine. This allows for bacteria to set up in the mucosal linings of the sinuses (sinusitis – chronic sinus infections) and the small intestine (Small Intestinal Bacterial Overgrowth – SIBO) without creating evidence of an overt infection (i.e. despite the suffering, their is no apparent recurrent C-Diff infection). Obviously, if you test positive for c-diff toxins there is a high likelihood that you do have an active infection and relapsed.

    Nonetheless what you want is to know how to get better.

    If there is an active infection, then the items discussed on this board is what I am familiar with. However, if you are left with IBS, then this is what I did and why.

    First, taking the drug previously mentioned, Cholestyramine, was necessary to bind to the toxins. I also used activated charcoal and there are some others, bentonite clay and welchol. Obviously, in my case, I had to move to a mold free environment and I also purchased the best room air purifier on the market (google). I then switched to essentially the paleo diet or grain free, sugar free diet, with nutrient rich vegatables (broccoli,salad) with lean protein (low inflammation diet). I avoid grains because I tested positive for Gliadin antibodies plus grains, such as wheat and corn, are subject to high mycotoxin concentrations such as vomitoxin. I took high quality high dose fish oil to treat for the inflammatory response (this comes in a prescription). I also use a high quality tap water filter. The problem with tap water is that testing for cyanobacterial (algal) toxins is very limited with municipal water treatment plants and certain concentrations of these toxins, such as microcystin, are allowed in ppm levels in the water, which may be fine for most people, but not necessarily to those of us who are susceptible. Finally, I used sinus irrigation to treat for the chronic sinusitis.

    I do believe that having a c-diff infection or any other infection may make one more sensitive overall. And things that would have never bothered us before do. As for mold as a contributing factor to IBS, I would make note of some of the statistics that are published. The world health organization estimates that 20-40% of all buildings are sick buildings and the primary cause is water damage and microbial growth. With odds like that, even if your C-diff infection is cleared, the probability of spending time in a sick building throughout the day are very high. And with our immune systems run down as they are, I could see how one might be more susceptible to a sick building. The best recommendation I would have is getting a high quality (don’t go to a big box retailer) hepa filter. It will help to remove both microbial compounds and VOC’s out of the air as well as the C-Diff spores that we breathe in that lead to an active infection.

    I wish you all the very best in your recovery.

  101. Kelli says:

    I just wanted to thank you for posting. I’ve found it hard to find information on prognosis after C diff. This is very scary. If I should expect to have stomach pain if I have more than soup and crackers, I guess I have to live with it. Though I really just want to be healed completely. I’m already lactose intolerant, so cutting that is not a big deal. I just want to know that I’ll be okay. Got this after a dentist prescribed Clindamycin, like a previous person posted. He could have a least warned me.

  102. Helen Carlson says:

    I recently went to the E.R. for treatment for bleeding ulcerative colitis. I was given antibiotics and sent home. 2 weeks later I came back to the same E.R. with very similar symptoms. They did a stool sample test and diagnosed C. Diff. My world is upside down. After reading this message board I cannot help but wonder if I will ever be really cured and if my Dr.s are going to be helpfull or not. I was in the hospital for 5 days and couldn’t help but notice that even though I was in isolation, the nurses and my Dr. did not always gown and glove up. Nor did they wash their hands upon entering and leaving. I was so ill I didn’t even know I was in isolation or what protocol was until my daughter (an R.N.) came to be my medical advocate and pointed all this out to me. I’m sure C. Diff was carried out of my room to other parts of the hospital and God only knows what they carried into my room. Now, home again, I am wondering if I can ever do enough to make my home safe and free of this super-bug. I have cleaned all hard surfaces with bleach and bought a steamer for my soft surfaces. I sanitize my bathroom at least 10 times a day with foaming bleach and live steam. I have washed my hands so much that my thin skin is degrading. I now have to wear gloves when I go to the bathroom to cut down on the damage to my skin.
    I get so pissed off when I think of all the times no one put on a gown or gloves. NO ONE washed their hands. The soap dispenser didn’t even work so I couldn’t wash my hands after going to the bathroom. I complained about it and was always told that they would call housekeeping. Soap was not in there the whole time I was there.
    This is all so scarry to me. I feel like I am jumping through a million hoops while feeling so ill and I don’t know if my efforts will be even close to enough.

  103. Riku says:

    I’d like to chime in here and say my father was deathly ill with clostridium difficile as well as swine flu when the big outbreak occurred. He had gotten some dental work done, and was put on antibiotics. About a week later he had been shivering on the floor with blankets and puking non stop. He went to the hospital, they simply brushed it off as swine flu. He came home and not even a couple days later was rushed into emergency surgery where he had almost all of his bowels removed to save his life. He has an ostomy bag. Truly terrible disease my friend, and I’m so sorry you had to experience it.

    It’s definitely a scary realization when the best of the best in drugs don’t work anymore. It’s highly alarming. I hope to god you never go through such a sickness again. I saw my father suffering and I just couldn’t believe it. Kinda miraculous that my mom and I didn’t get sick, we didn’t take those extreme precautions to avoid the bacteria [ hell we didn’t even know such a thing existed ] But apparently it preys off the sick already.

    Anyways, that’s my contribution to this horrible illness.

  104. David says:

    My experience echoes others; I was given clindamycin for a tooth infection after having it
    pulled; the result was a c. dif infection that landed me in the hospital for 10 days; I
    almost died about halfway through (yes, you can die very easily from it).

    Massive amounts of Vancomycin brought the situation under control.

    I have chronic diarrhoea and IBS – 2 years after the infection; I’ve never recovered from the
    infection.

    I have tried all the things mentioned above; (probiotics, florastor, Kefir, charcoal and clay)
    , reducing artificial sweeteners, etc.

    Nothing gets rid of it; it waxes and wanes, and that is about it.

    For a point of reference, I am 56.

    Medicine doesn’t have a clue on this; I don’t think the hospitals and doctors wish to
    admit how serious a problem this is.

    30,000 die every year from c. dif infections.

    The Clostridium “family” includes Botulinum and tetanus; with the “dificile” variant,
    they form an unholy “trinity”

  105. Janet says:

    I have been sick with c-diff or dx with it Aug 2013. I believe that I’ve actually had it since my lap chole in 1995.
    My stools have never been right since then. Always loose cramping & involuntary diarrhea.. Jan 2012 admitted to hosp with pulmonary emboli in L lung. Just thought I had a bad chest cold . Am on long term anti coagulation for the rest of my life. Jump to dec 2012 put on augmenting by dr and developed a huge axilla hematoma b/c ny INR was 4.4. Spring 2013 admitted to hosp with kidney infection and I told them that the antibiotics were killing me and appro 6 wks later had dx of c-diff. I have been on 3 courses of flagyl and vanco and it will not go away. I feel sick everyday and haven’ t worked in 5 months as of today. Was so glad to finally find this place cuz I this ought I was going crazy. No matter what I’ve done it hasn’t helped.
    The info on diet was such a revelation as my docs have not recommended the BRAT diet.
    My GI wants to now send me to Madison for frecal transplant as I keep telling her I”m dying and no one is listening .
    I hope this works cuz I would rather die than keep living this way.
    I have been put on antidepressant and anti anxiety meds but these don’t help either.
    I also have the reactive arthritis in my L knee Nd L ankle which causes me extreme pian a d I have been using a cane to ambulate since fall of 2012..
    I have just applied for SSD orSSI b/c I can’t work let alone function in the daily world.
    My family is growing disgusted with me and my c/o of fatigue, no appetite, loose stools. I could go on and on.
    I just want to feel better.

  106. Jp says:

    My son contracted c diff after an emergency room trip for a mrsa infection. They slammed him with ABX and within a week here came c diff. Just like most, first Flagyl, it came back, then Dificid two rounds, came back, then decided to do the fecal transplant and luckily there was a GI DR near by that did the transplants. Told him he would fix him, and 100%. We just looked at each other after hearing that…..yeah right….Put him on vanco with a colon cleanse night before transplant. Transplant was from a family member, and done via a colonoscopy. He was to follow up each day For 3 days with an enema at home. Long story short it has been 10 months and it has not come back, has had a few tests done, all negative I HIGHLY recommend this route. I believe that it is the best thing for c diff. as long as donor is screened you really can do it yourself using the enema and there is a protocol out there by Dr Borody
    However, like others have stated, the fear, the anxiety, that it will come back has at times overwhelmed him. He had IBS before with some anxiety issues and still has IBS and worse anxiety, but is still free of c diff.
    I have read that the transplants are being done also at the mayo clinic in southern calif here and another place near Beverly Hills, but be sure to check with your gastroenterologist , there are some that are doing the transplants. If not I would do the enemas yourself. you just have to get past the ick factor. It works.
    Best to all

  107. helen says:

    Update….. Im feeling better. Im out of the hosp and taking vanco. I will be on it for 7 weeks. I have ordered kefir grains and will make my own. I have read that this is the best way to get the most probiotics. I am wondering if anyone here has done a kefir enema. Ive read about it and am considering it after my colonoscopy. Seems like a good idea

  108. Brian Hotrum says:

    I ended up getting C.Diff twice after they gave me antibiotics for a sharp pain in my side. It’s been six months since I had C.Diff, but still have the pain in my side. All the tests say I’m fine, so I guess I just have to live with it.

  109. Izzy says:

    Looking for some advice! My 13 yr old stepson was diagnosed with c diff a week ago. he has been having issues for the past month. I started screaming c diff two weeks ago when i first smelled it. but i’m step mom and the docs didn’t listen. he lives with me and his dad but the docs didn’t want to talk to me. they actually went so far as to call his mom who lives almost 2 hrs away to find out about his symptoms! he was the typical boy. nonstop eating machine, independent, could bribe him with a mt dew! He could drink a gallon of milk in a day. now he is extremely lactose intolerant and i’m worried about what i can feed him. i already have plans on talking to a nutritionist. but until all the referrals go through, what would be adequate for his dietary needs? A brat diet is great for a few days, but i don’t feel comfortable keeping my son on that for long. i plan on nixing the soda and sweeteners. while in the hospital he can hold down a clear liquid diet but everything else seems to come back up sooner or later.

  110. Debbie Nunn says:

    My husband has C. Diff and while I helped him in the hospital I think I have it now. I have the same ssymptoms he does. Now that he’s home from the hospital after a month and a week I’m taking care of him and now I’m too sick to even take care of myself! I just happen to have flagyl on hand but it wasnt enough. Now I’m too sick to even want to go to the hospital but I’m going to have to. I noticed that my face is drained of color. the doctor say that I have fibromyalgia and osteoarthritis and this sure does not help the situation.

  111. Wendy says:

    Hi. I was diagnosed with C diff in November 2013 after a emergency appendectomy in October and a kidney infection two weeks later. I was on Cipro after the appendectomy and was given Levaquin for the kidney infection. Normally, a healthy 30 something female for most of my life with very little antibiotic usage because of my good health, I believe that the c diff was caused by all those antibiotics killing the good bacteria in my gut.I am glad to say that I only spent 4 and a half days in the hospital on IV antibiotics and on Flagyl for 10 days out of the hospital. I have been doing good, so far. But, reading these posts makes me realize that I may have a re-occurrence. I also do not feel %100 in my intestines. Right now, as I type I have a pressure in my lower abdomen and occasional pains and discomfort every day. I was starting to feel not right in my stomach a few weeks ago and started taking Floraster and Probio5 by plexus. I started feeling pretty normal. I have since ran out of Floraster and have still been taking Probio5 by Plexus on and off since running out of Floraster. It has the S boulardii like Floraster and also other bacterias and enzymes. I think I will start on the Floraster again because I felt almost normal when taking it, or maybe increase my dose of Probio5. I know right now I am lucky because I have not had the terrible symptoms as other have on a continual basis. But, reading this makes me realize that maybe it can happen to me. I have been feeling “off” in my intestines again, lately. I’m glad there are others like me who have gone through this and who have offered some great advice on how to handle it. Some of the advice given here will be taken to heart by me so that I may avoid having a relapse or getting the symptoms again without the infection. I know I have been treating the c diff infection like any minor infection. Once its gone, its gone. But, now I see that I have to treat it like a disease that may come back at anytime. I am glad I found this forum. I now know, There are others out there and I don’t feel so alone. It gives me hope that one day I will be “normal” again. Good luck to all who are experiencing this or have experienced this. I know it can be a very life changing ordeal.

  112. Amanda says:

    hello all, thank you for this blog, I thought I was the only one experiencing weird symptoms associated with what I recently thought was c.diff.

    about 6 months ago I began experiencing constant upper abdominal discomfort (not pain) above my belly button, with no other symptoms present I thought I was imagining things.

    a month ago I began having constant diarrhea, also when I go to the bathroom basically my entire abdominal area aches very very badly. so I went to Bayfront convenient care and they diagnosed me with diarrhea, sent me home to be on the brat diet and told me to give a stool specimen to check for c.diff.

    the specimen came back negative.

    a week later I ended up in the er for a really really bad stomach pains. I told them that my discomfort was on the right side and it they did an ultrasound where my gallbladder is and found nothing wrong so they sent me home after 2 hours with gastritis and told me to continue the brat diet.

    about a week after that I ended up in the ER again because my bellybutton was oozing blood and pus come to find out I had mrsa. I was put on antibiotics for two weeks.

    I no longer have mrsa but my diarrhea has has not stopped for a month, as well as the overall discomfort. I have been on the brat diet also for the past month and have noticed no change in bodily symptoms. to be honest I have no desire to eat normal food. I’m very sluggish and have a lot of fatigue, I can sleep all day with no relief. also, as soon as I stopped the antibiotics (Sunday night was my last dose) I caught some kind of cold with sore throat and a yeast vaginal infection.

    any help or suggestions y’all can give me would be greatly appreciated.

  113. Kat says:

    After approx. 4-5 month cdiff and aftermath after acquiring in hosp after chemoembolism/antibiotics, mine seems to be finally gone. I call this my “take no prisoners” approach when I decide I’m not willing to live with yet another challenge (end-stage cirrhosis, liver cancer, multiple autoimmune, weekly lung taps to drain fluid, & wasting, among others). I just set my mind to tell the c-diff it had picked the wrong girl to mess with!

    So here’s what I did: MAX Care (most comprehensive product I’ve found with many strains probiotics, prebiotics. and digestive enzymes (you can get this cheaper at Vitacost), BIO-K at night, Culterelle GC for good measure, and Sacchromyces Boulardii (including enemas with it). I also drank bone broth (the kind thats broken down over 24-48hrs using apple cider vinegar) It helps heal the mucosal lining, etc, while adding back in minerals, collagen, amino acids etc. Whole leaf aloe vera doesn’t hurt ether. During bad bouts combo of BRAT and LAC anti-inflammatory diet used in Europe for years). I take only essential meds, eat only organic/pasture-fed/uncured, whole grains, and do not smoke/drink. Needless to say, anything other than clean living and eating present a whole host of challenges while trying to knock this.

    (Believe me, I’m no angel(Pepsi,Twinkies, and Virginia Slims, anyone?)but with age comes wisdom and I’ve been studying nutrition and learning about the detrimental effects of our food system, among others on our health)

    Eventually the C-diff and after effects gave up and went crawling home with its tail between its legs! (lol)

    PS – For the smell keep a bottle of Mrs. Meyers Clean Day or the like in the lou – if you can spray the surface of the water before you go and the entire room as needed. Maybe even a door sign that warns others not to enter (at their own risk for at least 20 min after you leave)! And I guess we’ve all learned the joy of wearing adult diapers before our time???

    Keep in mind others still have it much worse – we could have a fistula and be publicly shamed and banished by our families to a hut out back. We’ve still got it good here. When we’re at our lowest its most important to find the silver linings… hang in there – you can prevail – you’re body wants to be in a healthy state!

  114. helen says:

    Hey Kat. I found your entry to be very informative. I have been on a vanco regimine for many weeks now and am now taking one 50mg. Capsule once every three days. I am starting to have symptoms again. Belly tenderness, loose bowels, extreme pain when during my b.m.’s. I cant get in to see the doc for several days. After 2 rounds of flagyl and 2 rounds of vanco (the latest lasting 7 weeks), I am really bummed. There is a new drug specifically for c diff but it is more expensive than vanco. Since I’m being treated on uncle sam’s dollar I know they don’t want to prescribe it. Right now instead of the brat diet (which I have done for quite a while) I am now trying this: Drink kefir at meal time and snack on activia with a probiotic chaser. I did this all day yesterday and into today. I haven’t had diarrhea for 20 hrs so far. Keeping my fingers crossed. I am hoping my body can figure this out and I don’t end up in the hospital for a third time. My last bill was 50k. Uncle Sam is a huge help but I am still having to dig into empty pockets for the rest.

  115. Thanks so much for this blog on C-Diff . Had surgery February 17 outpatient and by the 23 was admiitted to hospital with severe case of C- diff. Very scarey I am 50 years old and very much on the go. Any help with diet to help aling the way. Mant Blessings to all. Will post more later.

  116. Janet says:

    I am 4 weeks post fecal transplant as of Apr. 18. I am finally starting to feel a bit better. Still weak on exertion and somedays have no energy at all. Have changed my diet….no soda, no lactose, easy to digest foods. Yes I sometimes cheat but have learned that it’s better to stick with bland diet. Still experience nausea/cramping ESP. In the morning after rising & rely on Zofran & hycosamine to help during this time. Still need to nap mid-day because of fatigue.
    Have been sick since Aug 2013 and wonder how long until I feel “normal” again. If anyone out there has an answer please fill me in.
    Thanks and good luck to all who are suffering with this horrible infection.

  117. Diane says:

    I was diagnosed with Cdif 13 months ago after a bad ear infection, and the course of antibiotics treating it.
    This resulted in a bout of servere diarrhea, deyhrdryation with a potassium that was bad. I was at work, feeling sweaty, dizzy and ready to pass out. They called the ambulance because I was unable to stand. I begged the ER doctor to admit me. I thought I was dying. Yes, the smell is like death! And it’s coming form ME!
    I was admitted for five days. I had intravenous Flagyl that didn’t help. I was switched to Vanco. Vanco made a difference!
    I was sent home with oral Vanco, thank God for my Blue Care Network policy and only having a $6 copayment!!!
    I was off work for a month.
    I have lived with CDif ever since. I am afraid of my Grankids when they are I’ll. I wash my hands all the time and use hand sanitizer a lot!
    The hardest thing, so far, is a stomach flu, experiencing that right now. It is horrible!!! I am taking Probiotic and eating yogurt and bland diet. It’s just a hard, or at the least, difficult thing.

  118. Michelle says:

    Wow! I was diagnosed with C-diff November 2011 and I just found this blog. I’m now 51 years old. I thank each of you for your comments. I feel better that I’m not crazy or alone even tho I wish this stupid disease did not exist.

    I was mis-diagnosed with Pancreatitis and given Cipro. I took Cipro for 4 days and a week later I was in the ER with C-Diff. I had not had ANY antibiotics in 14 years prior to the Cipro. They gave me Flagyl and Vanco. I was convinced these meds were going to kill me.

    After completing the first round of these antibiotics, the C-Diff came back after two weeks. I was prescribed another round of Vanco and Flagyl. One week before I completed my second round, the C-Diff came back again. (Feb 2012). My doctor told me there was nothing more that modern medicine could do for me and she suggested that I go to Chinese medicine. She referred me to Eileen Han, an acupuncturist in San Diego. I was in her office within an hour (don’t remember how I got there) and I told this nice lady that I went to her to die. I was so sick, I knew I would not make it. I had not eaten anything in four days and had very little sleep in weeks.

    After a three hour treatment that afternoon, I left there and went straight to dinner to eat. I was so hungry and I felt life again. I slept that night for seven hours straight. I went to her everyday for Two weeks. Then three times a week until I now…. once a week. She saved my life!!! I can go once every two weeks now if I stay disciplined with my activity and eating.

    I took Bio K for 6 months. Then my stomach was too grumbly. So I stopped probiotics. Recently I tried a raw vitamin and it made me sick.

    Now I live with all kinds of symptoms that the doctors have no answers for. Compared to where I was, I’m much better. However, I’m not sure I will ever be healthy again. I tried to stop acupuncture (don’t ask me why) and I got symptoms again (sickly feeling, weakness, insomnia, achy arms and legs, bowel issues).

    I don’t trust doctors anymore. I have been told I have IBS (minor) and possibly Chronic Fatigue Syndrome. Prior to C-Diff I was a Ovo-lacto vegetarian. Chinese medicine has me put me back on eating poultry. My “go to” meal when my stomach is upset (nausea or diarrhea) is white rice, spinach and kale sautéed in lots of garlic and ginger and white meat chicken. I don’t eat any dairy or fried foods. I don’t drink sodas or anything with artificial sweeteners. I never eat at chain restaurants and I only buy organic foods at home. I use agave syrup in my green tea. I try to eat 6 small meals a day. And I drink at least 48 oz of water a day. I have not had one cold or flu since I started acupuncture. It seems that I get flare-ups or “episodes” if I work to hard or don’t eat fresh food. Stress seems to throw me into an episode. I now deal mostly with achy joints, skin hurts, sensations down my arms and legs, armpits and neck are sore like gland issues, occasional insomnia, fatigue, minor depression and anxiety, pressure behind my eyes, If I stay true to acupuncture, I feel the best. I do enjoy one glass of red wine a night as it helps me with anxiety. I forced myself to start mild exercise last July. I try to exercise by walking or light jogging and light arm weights 45minutes a day. If I do more, it sets me back a week with major fatigue and body aches and stomach issues. If I do less, I feel depressed.

    If I don’t keep a routine with acupuncture, my stomach is always bloated and with gas and I feel sickly soon after then it seems to start the “episodes”.

    I was such a healthy, hard working person before C-Diff. It is just NUTS to me what this last 3 years have done to me. If you have or had C-Diff, I HIGHLY RECOMMEND ACUPUNCTURE AND CHINESE HERBS. Sometimes the needles hurt a little but it’s definitely worth it.

    I’m convinced that if you get C-Diff, your life will change forever. Thank God my husband has been so supportive!!! I sometimes think that he thinks I’m a nut. But we have to keep educated on this so we can stay ahead of it.

    Best wishes to all who have to fight this battle. Lets stick together!

  119. Rebekah says:

    Hi Guys,
    Posted here before and wanted to give an update.
    POST C-DIFF
    I have since studied quite a bit on the topic. Finding that the stomach has a direct connection to the brain was huge for me. During and after the bout with C-Diff I felt so anxious, tired, depressed and even started losing hair. This prompted me to change my diet. I cut out coffee, dairy, sugar, wheat, and alcohol. I felt much better but still not up to par. I kinda fell back with coffee and alcohol but could tell a difference as soon as consuming either one. These substances would cause spasms and bathroom trips and a toxic feeling in my gut. Now I only drink coffee or alcohol on special occasions because it’s not worth it. I was still feeling anxious and slow some days so I cut down my consumption of nuts and completely cut out rice and beans. I found some articles that said clean eating stops the irritation but you need to rebuild the lining. I am currently working on getting enough prebiotics (oatmeal), probiotics (pills and plain yogurt), and vitamins. Today I am planning on purchasing a prenatal thanks to the info posted here
    CONCLUSION
    C-Diff causes so many issues physically and mentally. Drastic diet changes are necessary. Lot’s of water to flush out harmful toxins is important and lots of rest. I really think the post C-Diff body must be coddled for forever after C-Diff. I don’t think I have had any weeks post C-Diff where my gut felt normal. It’s been more than a year now and I feel as if I am returning to normal energy level wise. I still have to sleep a little more than I did before but it’s worth it. Keep plugging away and making changes!

  120. Ted T says:

    I got C-Diff December of 2013. It hit me hard and I was very sick for a 6 days before I got to see the doctor. Long story short, I did two rounds of meds and finally was “cured”. By cured I assumed I would be back to normal, but that is not true at all. I still have diarrhea, and have noticed that my endurance and strength has taken a beating. I sure hope this gets better, this is a very bad experience.

  121. Christie says:

    My 14 yr old son was prescribed 500 mg of penicillins every 6 hours for 30 says by his dentist. He suddenly became extremely ill spending 3 days in ICU before the doctors discovered that this mysterious illness is c-diff. I am terrified that my very active 14 year old son will never be the same. There must be something that can be done about these dentist overly prescribing antibiotics.

  122. 3 weeks ago I started having horrible cramps and bloody stools. I tried to tough it out but eventually went to the ER. They took a stool sample and gave me a narcotic for the pain. 2 days later the Dr. calls and says I have C Diff. They gave me 1500 mg a day flagel. I had all the rare reactions and then got Thrush. The D Diff made me sick, Flagel made me sick and the Thrush med made me sick. I finally finished the meds, but I still feel exhausted, and have dirreaha yet. I called the Dr. and she said just hang in there. I am afraid to go anywhere because when I have to go poo, I have to right now! I also have CKD which makes my immune system weak. I read the comments above really makes me afraid to go to the Drs office or hospital or take that antibiotic that causes it. having C-diff makes you afraid of eating or drinking anything.

  123. helen says:

    Update…I spent about 6 months fighting the c-diff. I had two hospital stays and three rounds of vanco. I have been clean now for several months. I had a colonoscopy and three additional stool tests and no evidence of the c-diff could be found. I will always have to be very careful about anti-biotics and will take vanco along with and after if I have to take an anti-biotic.
    The upshot is that I feel good. I eat normally and my bowels work better than ever. Prior to the c-diff I was constantly constipated and gassy. It’s as if the reset button has been pushed. I am regular!!!
    I believe the difference has been kefir. I ordered the milk grains from amazon (it’s really cheap) and made my own at home. I drank it daily for a couple of months. From the reading I have done, the DIY kefir has more strains of pro-biotics than yougert and pills. They have 3 strains. Store bought kefir has 9 and the stuff you make at home from the grains has even more. I think all the anti-biotics I have taken in my lifetime killed some very important bugs in my gut that I couldn’t replace any other way. I haven’t even had a cold in months. I used to get sick about once a month with frequently let to an ear infection and ended me up on anti-biotics. I would encourage anyone to explore this option. It has made the difference for me.
    I AM WELL.

  124. Kathy says:

    I got c diff March 1, 2014. I had taken antibiotics back in late Nov./early Dec. for a UTI. I didn’t know what in the world was happening to me. After going to bed one night, I felt a really different pain. Woke up the next day, got up as usual, etc. but had to go lay down. I’d get up & do a few things & have to go lay down again. I finally managed to eat a little that day, get on the computer, read a little, watch a little tv, etc. Then that evening, diarrhea started. I didn’t even realize half the time, I had to go. It just came out, everywhere. I didn’t have the smell that some talk about that. I went to the ER & they did blood work, UA, a ct scan & gave me fluids. I was told I had a bad stomach bug. I told them I don’t normally even get those & this was no bug; at least none like I’d ever had. I begged them to keep me overnight or do a stool test. They refused & sent me home. I got in to see my family doc the next day & he sent me to the hospital to be admitted. I was tested for C Diff & was there for 17 days. I was put on Flagyl & protonix through IV. I told them I didn’t think I could take those. I wasn’t able to hold anything down; not broth, ice chips, etc. so I couldn’t keep down my BP med, thyroid med, etc. I was getting zofran & phenergan. I wasn’t worried about getting my cholesterol med or my depression/anxiety med (which was a mistake.) I was in pain & one night my BP shot up (due to pain, nausea.) They had to give me something to bring it down. Plus I felt like I was in a cloud or something; everything was fuzzy. The diarrhea finally started easing up. They had to redo my IV once & then it happened again; not to mention all the blood they were drawing. They decided to take me to get a pic line. I had to be unhooked from everything because I had to be worked in & ready to go down at a moment’s notice. As soon as I was unhooked, I started feeling better. I could concentrate, see things clearly, etc. The nurses decided I couldn’t take the flagyl or protonix; ya think? After I got the pic line, I started liquid vancomycin & it tasted awful. I started eating again & building up my diet but had to eat slow & not much at a time. Also had to omit dairy. But the diarrhea started again too. I was retested & was still positive. They called in a gastro doc & infectious disease doc. I was put through a colonoscopy & stomach scope. The prep didn’t work for the colonoscopy & I had to have an enema. They found nothing. I was sent home on oral vancomycin 3 x day for 30 days. I was an emotional wreck; depressed, nervous, worried, had a $40,00 hospital bill (not to mention doctor bills, anesthesia bills, etc.) I saw the gastro doc 1 wk. after coming home & was told to go back in 6 wks. I kept calling my gastro doc with questions after the vancomycin was gone. When I saw him May 9, I told him I didn’t think the c diff was gone. I still felt bad, had some pain, no energy, etc. even though I had no diarrhea but a soft stool. He thought I was crazy. He said if it was there, I’d know it & smell it. I told him I never had the smell & the nurses in the hospital couldn’t believe it. He said it it came back, it would come back with a vengeance; did no stool test. He said the lab wouldn’t run a test on a stool; it had to be diarrhea. Two weeks later, on May 22, I was at my family doc with all these symptoms. He got me in the next day to see the gastro doc, who did nothing; though I was crazy. I managed to drag around & do a few things; thank goodness I didn’t have a job because I couldn’t have worked. During this whole time, I did manage to go to the grocery, bank, get my haircut, get new glasses, go to church some, etc. One day, my symptoms were worse & I was sick & tired of all this. I went to my family doc & he did a stool test. I WAS POSITIVE. My family doc had offered to run a test earlier but I kept thinking it would be a waste of time & money (going by what the gastro doc said about the lab not running it.) He called the gastro doc who put me on 250 mg. vancomyin (more milligrams than before) 2 x day for 14 days. I felt better than I ever had but 1 day after the med was gone, symptoms started again. I called the gastro doc on a Sat. & he didn’t believe me/did nothing. I called my family doc & he said I would have to go to the gastro doc. I got an appointment but it wasn’t very soon. However, a few days later, I hurt so bad one night, I couldn’t sleep. Got up the next morning & tried to go about my day but just couldn’t do it; had to call my husband home. I called the gastro doc & talked to the NP, as my doc was on vacation. She put me on dificid, which was hard to find & very expensive. I saw the gastro doc last week & he still doesn’t believe me, even though my family doc did the test on a soft stool & it was positive. He said I couldn’t go for weeks & do fair & then be sick,. If it was c diff, it would be there consistently; even though I (and my family doc) proved him wrong during May & June. He said I may have post infectious IBS & this may be my new normal. He gave me a prescription & said to pray, that prayer was a good thing. I’ve been praying & yes, it’s a good thing. BUT I WANT TO GET WELL, STAY WELL, FEEL BETTER. Nad as I’v ebeen typing this, I started feeling nauseous & I rarely feel that way. ***sigh***

  125. Kathy says:

    Forgot to say that I appreciate the info found here. Also, my family cleaned this house good while I was in the hospital. I’m driving myself crazy cleaning, as we’ve been cleaning good ever since I came home & I’m washing my hands so much, my skin is pathetic. And I also forgot to say that I was put on Florastor in May.

  126. Teresa L. says:

    Hi everyone! I am not certain how many of you come back to check back, but I wanted to say thank you. Everything has helped tremendously. I am a 31 year old female. I was diag. with IBS at age 18. I had mostly IBS-C, but my symptoms were intermitten by months and the pain varied greatly. I typically chucked it up to something I ate and usually felt better after a few days. July 2012 I got food poisioning for the first time in my life. I thought i was going to die, bec i had gone to the bathroom so many times there was nothing left by the time i got to the ER. I was sick 4 days at home being treated with anti nausea meds. It happened again about 5 months later nov 12′, same deal. Then about 5 months later march 13’I started having severe pain, sweating all over and had to just stop what ever I was doing for about 5-15 mins. It was typically around 2-10 days after my cycle and lasted about 2-6 days every month for 2 months. At that point i saw my MD and she sent me to a OBGYN. By the time I saw the OBGYN I was having pain every day once a day with varying pain levels. She thought I might have endometriosis and suggested I take Ibuprofen 10 days before my cycle, during and 10 days after. This didnt make sense to me since that would obviously tear up my stomach (ibuprofen is harsh on the stomach), so i inquired to another way to see whats going on. She stated the only way to prove it was to have an exploratory laproscopy surgery, so I agreed. The surgery was scheduled for a month out, which at that point i was having pain several times a day and it was waking me up in the middle of the night. The sugery was negative for endometrisois. however, my ascending colon was attached to the side of my abdomen- so she cut it away from there and cauterized it. I healed up after 3 weeks and was immediately seen a week after that my a GI who performed a Upper and lower GI with byopsies; which turned out negative. I was still having pain, just less severe after the procedures. I cut out red meat and dairy for a few months and improved greatly, but then the end of the second month pain came back. I had daily pain, so the GI suggested a camera capsule pill procedure- which was negative. Then a week later, i had blood in my stool(in the toilet bowl I saw it oozing out of my stool), so I had a CT scan – negative. Then the following month 2 breath tests; both negative. I finally requested to see a new GI doctor- since I had not seen him since the consult in July and he had only requested tests- with no results and refused to see me so I could ask questions after procedures and it was now dec. End of dec-begin of feb I lost 15-20 lbs. I ate gluten free for 2 weeks in Jan-with no luck (new pans, utensils, etc…) mid feb I saw my new GI; by then I had starp pain in my right rib- so he was convinced I had panceratisis; so i had a EGD-with ultrasound. Found out I now had mild gastritis and gallbladder sludge. He sent me to a surgeon. The surgeon had a HIDA scan done – stated my gallbladder was functioning at 86% and was no causing my intestinal issues and referred me to the university of Iowa City. It took 3 months to get in and in the mean time I went to Express Care 3 times in a month. Once for immense pain- they gave me a GI cocktail, second for stomach palpitations and third for heart palpitations. Then had chest pain everyday for a week-which i saw my doctor and he suggested I see a pyschiatrist. I was put on anti anxiety pills and a antidepressant; took 3 different anti depressants before we found one that did not cause immediate side effects. I changed every thing in my diet; no HFCS, no red meat (just fish and protein shakes or bars), less carbs, almost no sugary anything, no dairy. I basically just drank a meal supplement and probiotic kefir or probiotic 5 billion pill supplements. I started walking and then eventually jogging. I still had pain, but less freq and severe. Then i got bad, finally seen on June 13, 14′ at UofI. they had me take magnesium citrate to clear me out. I did better for 3 weeks, then pain started again; they then had me try GO Lightly; which was horrible and made my intestines feel RAW for about a week. a week after that I was still not good, so they pre-emtively started me on flagyl for SIBO. day 6 i had blood in my urine, so they took me off it and decided to put me on ampicillin 10 days every month for the next 6 months. I took the 10 days of ampicillin, felt better for a week, then got flu like symptoms without the vomitting, saw my md bec my stool had yellow gunk and red tissue in it. Stool occult tested positive for C. diff., which was apparently induced by the ampicillin. My md put me on flagyl even though i had reacted to it before poorly- sure enough day 6 I had maroon color urine and severe pain when urinating, UofI put me on vancomycin 56 pills – 4 pills a day (cost me 447$ after insurance) I have 3 days left and still in pain, but no diarrhea. I am very terrified of what will happen once the Rx is done. I dont want to be sick anymore. I just started taking s. boulardi probiotics 2 days ago and I have only been drinking a product called soylent ,which is lab created meal replacement (http://www.theverge.com/2014/7/17/5893221/soylent-survivor-one-month-living-on-lab-made-liquid-nourishment), but I am not so sure about it anymore. I just hope that c diff doesnt reoccur. I seem to have a strongly likely hood of reoccurance. My aunt has lupus and great aunt died of scleroderma at age 56 in nov 13′, but I have tested negative for those so far. argh…I feel lost- but this webiste and comments have helped me not feel so alone, crazy or like killing myself. There is hope…educate myself, clean with bleach (c diff can live on surfaces for 40-70 days and can only be killed with bleach or heat), take probiotics (only s. boulardi-bec it is they only reseached one that will work with antibiotics and has been proven to help with ibs and c diff in lab mice- other probiotics may feed c diff) and to eat healthy, exercise and get support (talk, share, cry and live my life the best I can). If i get c diff again I will not be able to afford it, so I havent a clue what I will do. My parents can not afford it, I cant either. My boyfriend paid the 447$ this time and is now tight on money. I have over 10,000$ in bills from the last year and a half of procedures and can barely pay on each month and I cant get a loan bec I have terrible credit. I just hope and pray it doesnt come back.

  127. Tara says:

    Hi everyone,

    Your comments are very helpful and thank you Duane for this blog post.

    I too went in for a sinus infection and was prescribed Augmentin. The doctor warned me that it would upset my stomach and advised me to take probiotics (which I did.). A few weeks later I had terrible diarrhea, went back and now my doctor thinks I have a c. Diff infection and prescribed me Flagyl on Wednesday. It is Saturday and I am starting to feel a bit better (but a rough ride). M

    I am hoping this takes care of things and I won’t need another round. I did order Prebiotics from Amazon, as suggested.

    Wish me luck, and once I wrap my brain around all this, I might start advocating against the dangers of broad spectrum antibiotics.

    Tara

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