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:
C. diff in the News:
C. diff and Probiotics:
Testimonials:
Research Papers:
