Monday, April 14, 2014

What I told my mother about c. diff (clostridium difficile)


This is a public service announcement!

About a year and a half ago, my mother was in the hospital for some surgery and what was supposed to be a maximum stay of 7 days.  While there, she developed a terrible intestinal infection called clostridium difficile, otherwise known as "c. difficile", or "c. diff" (if you can't be bothered with syllables), which kept her in the hospital for 24 terrible days.  I was with her for the first 20.

By "terrible", I mean to say that she was in constant, tremendous pain, nauseous, could hardly move or walk, couldn't eat, was hypersensitive to changes in room temperature, was rapidly losing weight, desperate, and was told that if her infection got any worse, they would have to remove her colon.

Terrible.

When my mother was diagnosed, the hospital brought in the infectious disease doctor, who explained that sometimes a course of antibiotics (which is standard for surgery patients) will knock out all the good bacteria in your gut, and allow the bad c. diff bacteria to take over.  He prescribed the standard treatment: more antibiotics.  I asked him whether my mother should take probiotics, and he told us they would neither help nor hurt.  She could take them after she got home from the hospital if she wanted to, but he didn't offer to give her any while there.

I was pretty skeptical about his "neither help nor hurt" comment, but we like to assume the medical community (especially the lead infectious disease doctor of a large hospital) is smarter than we are, or at least well researched in their field.  I accepted what he said, but when I wasn't assisting my mother with one thing or another, I quietly went about trying to research that doctor, probiotics, and c. difficile on the iPad I had with me.  I didn't learn much more than the fact that I can't do real research on an iPad; it's too clumsy, and I couldn't focus enough to figure out how to read medical papers  (high school biology class was oh! so long ago...).

After days on the antibiotics (by then given intravenously along with Mom's food-stuff), my mother wasn't much better, and may have been slightly worse.  The doctors decided to put an intermittent suction tube through her nose and into her stomach to try to draw some of the infection out that way.  She was hooked up to that suction for nearly a week.  She was also given an intravenous immunoglobulin treatment... whatever the heck that was.  I have a hazy recollection of it seeming helpful.

This is what she looked like.  You can see the IV's on the left and the hose running to the vacuum canister on the wall to the right.


By the time they finally took out my mother's suction tube, the intravenous feeding had given her back some small amount of strength, and although she was still in considerable pain, the heavy antibiotics had slowly started to get the upper hand.   Comfortable that my mother was on the mend, and called back to New York by other obligations, Cindy and I flew home on Day 20.

But I couldn't stop thinking about how that doctor had poo-poo'ed probiotics (see what I did there?).  As soon as I got home, I spent every spare minute I had researching more about C. diff.  I wanted to know about drug therapies, I wanted to know about probiotic and homeopathic therapies, and I wanted to know how the bacteria interact with our moods.

I started by researching probiotics.  I read articles, research papers, and testimonials, and two days after returning home, I had the following text exchange with my mother:

Me: Mom, I have been doing some research, and I want you to request Dr. Elmortada start you on a probiotic named "saccheromyces boulardii" immediately, please. Lory 11:06 AM
Kathleen Henning: I gave it to staff and they will see if its ok for me 11:24 AM
Me: Thank you. I have read several academic reports and personal testimonials that indicate it makes all the difference. I love you. 11:25 AM
Kathleen Henning: Thanks 11:28 AM
Me: Just spoke to your nurse, Nancy. She said you walked a full lap around the floor and they started you on that probiotic. I'm so glad. 4:26 PM

Now, I'm not saying that in within 4 hours of requesting that probiotic my mother was able to walk again.  She had slowly been getting stronger and was out of danger of losing her colon.  But I don't think it's a coincidence that on the day she started taking probiotics, she was able to walk much farther than she had walked since coming out of surgery 22 days earlier.

The next day, my mother was released from the hospital and taken to her dear friend Annie's home to recover.


C. difficile infections have reached epidemic proportions in this country. 

To add insult to injury, they have a high instance of recurrence.  I have read that 20% of C. difficile patients go through a second bout with the infection.  And 40-60% of those who have had a second bout will have more - some even get it every few months for years.


I also read that in Japan and many European countries, probiotics are prescribed anytime someone is prescribed antibiotics.  And there is a growing wave of research that proves how important maintaining a balanced micro-biome (bacterial ecosystem) in our guts is.  

In other words, the infectious disease doctor at Mom's hospital was flat wrong about probiotics.


Here's a link to an article from Science Based Medicine (.com) that supports my claim of his wrongness!  It's called "I've been prescribed an antibiotic.  Should I take a probiotic?"

In a minor synchronistic miracle, I started writing this post yesterday morning.  And as I was biking to work afterwards, a podcast came up on my playlist that is all about bacteria, probiotics, your gut's micro-biome (which is like a little ecosystem in your intestines), the potential future of healthcare, childbirth by c-section, C. diff, and how all of it fits together. It even touches on the lower diversity of intestinal flora in modern Americans vs hunter-gatherers (hunter-gatherers in the Amazon, for example, have 50% higher rate of bacterial diversity in their guts than we do).  That part in particular has me wondering if our processed food and pesticides are partially responsible for that lack of bacterial diversity!  Anyway, I haven't told you everything, and you should listen to this podcast for yourself.

I give you the excellent "Science and the City" podcast episode from The New York Academy of Sciences:


And here's Mom on the mend. This was on the occasion of her first walk around her property - approximately 3 weeks after being released from the hospital.  She has been free of Clostridium difficile ever since.


If you've made it this far, you'll want to read the actual research I gave my mother on C. diff.  Just keep in mind that I am not a doctor, and you are responsible for your own damn self.

First, a bit about the diagnosis:

Clostridium difficile (c. diff) - a bacteria in the colon that is harmless when kept in check by the normal balance of flora in a healthy colon.  When that balance is thrown off (often by the use of general antibiotics - frequently with Clindamysin specifically), the C. diff spores can "hatch" and produce two types of toxins (cleverly called "Toxin A" and "Toxin B"), which cause inflammation and diarrhea.  There are different strains of C. diff, and I never found out which strain my mother had.  Some are more drug-resistant than others.

Pseudomembranous colitus - a condition caused by C. diff toxins A and B (they currently think B is worse than A, but they are both harmful).  It is characterized by a pseudomembrane in the colon along with inflammation in the colon and diarrhea.

Standard or FDA-Approved Treatments:

Metronidazole/Flagyl - this is typically the first antibiotic prescribed to treat C. diff.  We noticed Mom improve for the first few hours after the first couple of doses of this, and then it seemed that the C. diff would surge back and regain the upper hand.  This was administered by IV.

Vancomycin/Vancocin - this is another antibiotic and is prescribed for patients with moderate to severe cases of C. diff.  Mom took this orally, in an orange syringe she squeezed into her mouth (the orange syringe was not important; she could also have drunk the medicine from a cup or a clear syringe).  If she had ever developed an obstruction (like an abscess, for example), they might have given her the vancomycin rectally.  Luckily, both of her CT scans showed no obstructions, so we knew the Vancomycin was getting where it needed to go.

Cholestyramine (aka Questran, Questran Light, Cholybar) - This doesn't seem to be well known, so it is worth asking about.  It acts as a toxin binder against Toxin A and Toxin B, helping to relieve symptoms of C. diff.  When using Cholestyramine, one needs to be careful to use enough to bind the toxins in the colon but not so much that colon function is slowed (constipation).  Recommended dose is 4 grams twice daily (2 hours before or after other meals to ensure as much as possible makes it past the stomach juices and into the intestines/colon).

Pharmaceuticals Still In Trials at the Time of My Research:

Fidaxomicin/Dificid - as effective as vancomycin in stopping symptoms, but supposedly has a higher rate of cure (no recurrence).  It is still in trials and not yet available.

Rifaximin/Xifaxan - This is an antibiotic generally used to treat traveler's diarrhea.  It is generally not absorbed by the body, which allows it to get to the intestines and colon, which is where the C. diff bacteria reside.  Rifaximin is almost completely excreted in the feces in its original form, and it seems to have minimal impacts on the beneficial intestinal flora.  It has been shown in small human studies and some hamster studies to be as effective as Vancomycin in treating C. diff, but it has a better rate of preventing recurrence of C. diff. Because it is minimally absorbed by the body, it is thought to have minimal side effects.  It is still undergoing tests and is not yet used as the primary treatment for C. diff (although it is used for other things as initially stated), although I see a study out of Finland from October of 2012 that concludes Rifaximin is safe and "can be considered as an optional treatment for recurrent C. difficile infection."

Meredex's CDA-1 and CDA-2 (aka MDX-066/MDX-1388) - these are antibodies and have also shown great promise in mitigating the effects of Toxin A and Toxin B, and they also reduced the rate of c. diff recurrence.  It appears these antibodies do the same thing as Cholestyramine, but better.  They are also still in trials and are not yet available.

Probiotics and Homeopathic Treatments:

Saccharomyces boulardii - this is a probiotic strain of yeast (not bacteria, so it is not susceptible to antibiotics) originally found in the skin of lychee nuts and the mangosteen fruit (both of which are delicious, if you ask me).  I ordered Jarrow Formulas' Saccharomyces boulardii + MOS for my mother.  There are some risks of developing Fungemia in Intensive Care Unit, immunosuppressed, and tube-fed patients, but those risks are apparently negligable in other people suffering from C. diff.  I have been taking a probiotic that includes S. boulardii for more than a year.

Lactobacillus paracasei, Lactobacillus plantarum, Lactobacillus acidophilus - These are probiotic strains of bacteria, and they are shown to be effective in fighting C. diff according to some studies.  In fact, since I've been researching all of this, I discovered that the probiotic Cindy and I take has all of these as well as the s. boulardii that I mentioned above.  Ours is by a company called Standard Process.  The specific pill is called ProSynbiotic.  I recommended my mother get something with more active cultures separate from the dose of s. boulardii + MOS until she had put this infection behind her.  After that, it seemed reasonable to me that she pare back to a single pill like ProSynbiotic for gut maintenance.

Mannan OligoSaccharide (MOS) - this is derived from the cell walls of the yeast, Saccharomyces cerevisia.  An oligosaccharide  is a carbohydrate made of simple sugars, and they tend to be indigestible - they belong to a broad category of fiber.  This means that they pass through the digestive system into the intestines and colon where they support the growth of beneficial bacteria and help prevent pathogenic bacteria from attaching to intestinal walls by essentially acting as a decoy.  MOS is most often currently used as an alternative to antibiotics in farm animals and pets.  It also appears to support the immune system, treat diarrhea, and allow the body to absorb more nutrients because of that reduction in pathogens.

Oregano - This is said by many to be a powerful, natural antibiotic, and I have seen patient testimonials referencing taking oregano pills or oil of oregano as part of their C. diff self-treatment regime.  There are also articles about farmers giving their livestock oregano as an alternative to antibiotics.  I have not yet seen any scientific papers on the subject, but it's worth keeping in mind in case more alternatives are needed.

Banana flakes or chips - These are noted as an alternative to Cholestyramine, although I can't find research on whether banana flakes help bind and reduce the virulence of Toxin A and Toxin B the way Cholestyramine does.  (NOTE: Mom ate banana chips and found them very helpful.)

Stool Transplant/Fecal Transplant - People are having some success in curing C. diff with this technique.  It's basically poop from a healthy person, cleaned up, and transplanted into the sick person, so the beneficial flora from the healthy person can colonize the sick person's colon.  It is not a commonly performed technique, but it is good to know about.  Dr. Brandt at Montefiore Medical Center in NYC and Physicians at St. Mary's/Duluth Clinical Heath System in Minnesota are both mentioned in an article to have very high success rates.  It's also discussed in the podcast mentioned earlier.

Final Notes:

If you have a C. diff infection, do not use drugs which slow the colon, such as narcotics and antidiarrheals.  It is thought that they prevent the body from passing the C. diff toxins as quickly as possible, and may extend toxin-associated damage within the colon.

Especially if you are trying to fight infection, probiotics should be taken two hours before or after other meals to ensure they get to the gut without being subjected to higher levels of stomach acid that are present when the stomach is digesting food.

Feelings of desperation, fear, hopelessness, and wishing for death are common among sufferers of C. diff.  Although I could find no specific studies related to C. diff, there are general studies that show bacterial infections can influence people's mental status and behavior.  If you have a C. diff infection and are having uncharacteristically negative emotions, please know it's not you, and you CAN get better.

UPDATE - An Incomplete List of Links:

On the sound advice of a good friend, I went back into my search history and culled some of the articles I read when doing my marathon C. diff research for my mom.  There are so many more articles these days, so I'm sure you can find much more that is worthy of your time if this issue is important to you.

General Web Sites:
http://www.uptodate.com/contents/clostridium-difficile-in-adults-treatment (this article states that studies on the use of probiotics are inconclusive)
http://en.wikipedia.org/wiki/Clostridium_difficile (let’s not forget Wikipedia!)

C. diff in the News:
http://www.gastroendonews.com/ViewArticle.aspx?d=In%2Bthe%2BNews&d_id=187&i=July%2B2009&i_id=541&a_id=13458&ses=ogst (shocking that this article, which is about the anticipated improvements in C. diff diagnosis and treatment, doesn’t mention probiotics)

C. diff and Probiotics:
http://nexabiotic.com/search-reviews-for-diff/ (an add for this specific probiotic to treat C. diff)

Testimonials:
http://www.peggyfoundation.org/ (a C. diff education and advocacy group with some amazing stories)
http://www.peggyfoundation.org/c-diff-stories/129-amy-burke-dc (This woman’s story interested me the most)
http://steampunkpaleo.wordpress.com/my-c-diff-story/ (in fact, this is a whole blog about a person’s experience with and after C. diff)
http://www.kingmaker.net/CDIFF.HTML (seems fishy, since they’re selling something, but it’s interesting anyway)

Research Papers:
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC108158/ (This one focuses on Toxin A and B)
http://www.gutpathogens.com/content/3/1/2 (a general study of probiotics in medicine)
http://www.ncbi.nlm.nih.gov/pubmed/23095030 (this is one of the ones about Rifaximin)

And, lastly, I just found this: http://globalbiodefense.com/2012/07/20/drinking-tea-to-combat-ricin-anthrax-and-c-diff/ (an article explaining that good old cups of tea might help prevent C. diff)

16 comments:

  1. My dog had a c. diff. infection (confirmed by vet) an the flagyl did not get rid of it. It kept returning every month or two. I tried the saccharomyces cerevisia probiotics for months, to no avail. I don't know if it was because the product was ineffective because it wasn't refrigerated at some point from the manufacturer to the health food store or not. But I gave the product a valid try of 3-4 months.

    What finally got rid of it in my dog was oil of oregano. I gave her 4 drops in a capsule twice a day with meals. (I wrapped the capsule in a peice of buttered bread) for 6 months. The diarrhea cleared up immediately and did not come back for the entire 6 months. I kept her on the oil of oregano for 6 months because I wanted to make sure that the bacteria was indeed gone. It has not come back and it has been 5 years.

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    1. I'm so glad you persevered and that oil of oregano did the trick! There is new science emerging about the importance of our micro-biome all the time. We're just starting to learn that treatments can and should be tailor made to fit the patient's gut (even if the patient is a pet). Your experience seems to confirm those findings. Congratulations on the continued health of your dog and hopefully yourself!

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  2. This is a great post! My GI called last night and told me I tested positive for c. diff. I think I've been fortunate with a relatively mild case (the #3s as I call them, stomach cramps, painful gas - but not so bad I can't function). Before we knew it was c.diff, we thought maybe it was some sort of IBS so my doc prescribed xifaxin, which as you stated above is now showing to be an effective treatment, so fingers crossed! I'm also taking Florastor, AND my bff who had c.diff recommended oil of oregano, grapefruit see extract, and the saccharomyces boulardii (which is in Florastor).

    Anyway, this was a pleasant surprise to read something that was full of good info AND funny and helpful Glad your mom is doing well. You are a good daughter!

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  3. Oil of oregano gel capsules with 80% Carvacrol twice a day,
    After the very first dose in a matter of hours the fevers that had been pestering me for a month stopped and pain started to greatly subside.
    This is supplemented with probiotic acidophilus capsules 3 times a day.

    After 7 days of treatment the C-Diff seems gone although I will continue treatment for at least 30 days as those c-diff spores can be stubborn.

    One secondary complication of the C-diff is that I am now lactose intolerant, I am not sure if this condition will be temporary but at least it is easily manageable with a digestive enzyme supplement.

    Another potential complication of C-Diff is toxic mega colon, basically your bowel fills up like a balloon and refuses to release, this is very dangerous so if you go from the runs to constipation have some coffee or other laxative to get the bowel flowing again, you are better off with the toxins being flushed out just keep drinking lots of water to protect your kidneys and keep hydrated.

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    1. I'm so glad you're on your way to recovery. By the time my mom's infection was discovered, she had toxic mega colon. That situation is truly no joke.

      As for the lactose intolerance, you might look into the low FODMAP diet until your gut microbiome gets rebuilt.

      Best!

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  4. Hi Lori can you please email me at dlkiser331@yahoo.com? I was recently diagnosed with c diff and am on antibiotics but went to my health food store and they recommended the same thing. just had a few questions! thank you so much!

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  5. 10/12/16
    I am an older mother plagued by mild but serious recurrent C-diff. I can't thank you enough for such a terrific public service announcement! Great information...wonderful daughter.

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    1. Thanks! I hope it helps and you can get rid of your c-diff once and for all!!

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    2. Dear Lory. You may want to look to Sweden. I posted below.

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  6. In Ssweden they grow microbiotica in the lab and doctors can order online for C.Diff
    In the news:
    http://www.dn.no/grunder/2016/06/16/2032/20-r-gammel-avfring-fra-bergenser-har-blitt-behandling-for-diar

    http://www.dn.no/d2/2015/02/26/2112/Helse/buktalerne

    http://www.achimgroup.com/

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  7. In Ssweden they grow microbiotica in the lab and doctors can order online for C.Diff
    In the news:
    http://www.dn.no/grunder/2016/06/16/2032/20-r-gammel-avfring-fra-bergenser-har-blitt-behandling-for-diar

    http://www.dn.no/d2/2015/02/26/2112/Helse/buktalerne

    http://www.achimgroup.com/

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  8. This comment has been removed by a blog administrator.

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  9. I got CDIFF after the dentist put me on a double dose of clindamycin for a infection in my back tooth. It then took almost 6 months of my life to get better. I'm on oregano oil probiotics and clean food, one of the most powerful things to use against c-diff is monolaurin. One of the most important things is to support the bodies systems when dealing with cdiff

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    1. Thank you adding your experience. May you be c. diff free for the rest of your life!

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  10. Last year I had picked up c-diff with kidney stones and had been given clindamycin as they thought it was a bladder infection at first. And was taking omprezole as well at the time, which can increase the chances of picking up c-diff.

    It took 10 weeks of antibiotics to clear it up. (2 flagl, 8 vanco). I did add saccheromyces boulardii and a a second probotic into the mix in the third round.

    The other suggestions I had were silver water and oil of oregano. I didn't add them at the time - the oil burned without other food stuffs.

    But it seems I'm heading for a relapse here a year later and I'm rather unhappy. I haven't gotten to full diarrhea mode but definitely stomach cramps, gas, and crappy crap. I'm throwing the oil of oregano into the mix and doubling up hard on the probotics. I never stopped taking them but lowered their billions down to 5 and 10 over the course of the last year.

    So going back to 10 and 100 billions at least twice a day and I'll see how the oil helps this time while I wait to hear back from the doctor whats going to happen next. Maybe I won't need more vanco this time.

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    1. I hope things have turned around and you've been able to keep the c. diff at bay!

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