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.
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.