Two Years After C. Diff.
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.
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.
There are really only two drugs that work against c. diff – 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.
Duane Storey is a Vancouver-based photographer, writer, traveler, and entrepreneur. He is a co-founder of BraveNewCode, a web design & development studio that focuses on professional WordPress plugins. 
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!!!
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.
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.
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
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).
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.
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.
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.
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
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.
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
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.
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
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
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.
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.
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.
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.
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.
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!
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.
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.
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!
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!
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.
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.
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).
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
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?
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!!!
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.
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
also, the healthy stool has the good bacteria you need, if you are feeling desperate like I was…
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.
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.
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.
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.
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
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!
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!