I’ve already told part of my C. diff story, in a post called “How Undiagnosed C. diff Endangered My Life.” But I realized, after writing that post, that I wanted to go into more detail about this challenging illness. A more detailed patient account might be useful, especially to the recently diagnosed or to my fellow ulcerative colitis patients who wonder if they also have C. diff.
So here it is: my thorough C. diff account, complete with tips for diagnosis, treatment, and prevention of spread.
Because those with C. diff will be feeling a sense of urgency (pun intended!), here is a…
Table of Contents (with links!)
- Background on C. diff
- How I Got It: Antibiotics Plus Ulcerative Colitis
- Why My Diagnosis Was Delayed: The Danger of False Negatives
- Symptoms, and How C. diff Differs from Ulcerative Colitis
- Life Under Quarantine
- Hygiene for Prevention: Bleach and Soap, Not Purell!
- Treatment: Antibiotics and Fecal Microbial Transplants
Background on C. diff
I’ll start with some general background for those unfamiliar with C. diff. If you already know what it is, click here to skip down to the next section.
C. diff is short for Clostridium dificile, a species of bacteria that lives in many people’s guts. In healthy carriers, C. diff bacteria are benign, because the many “good” bacteria living in the gut keep the C. diff in check. But sometimes, when our guts are thrown out of whack by illness or antibiotics, the good bacteria decline. That allows C. diff to proliferate, whether we were already carrying it or whether we contracted it from someone else.
When C. diff proliferates, it becomes a C. diff infection. Such an infection can be mild, but it can also be a serious, life-threatening medical condition. This post is about those severe infections.
The main symptom of a severe C. diff infection is frequent, watery diarrhea, which rapidly depletes the body of nutrition and fluids. Because C. diff is often difficult to diagnose and treat, such an infection can drag on for weeks, months, or even years, as it did, for example, in this heart-wrenching patient account.
In the worst cases, C. diff can kill—through extreme dehydration, malnourishment, or secondary conditions that result from the body’s frailty. C. diff kills around fifteen thousand Americans per year, a little less than ten percent of those who get infected. Most, but not all, deaths occur in people over the age of sixty-five.
C. diff infections are highly contagious among people at risk for contracting them. That is, they are contagious among those with weakened gut microbiomes or immune systems. Healthy people are not as likely to contract an infection, but nevertheless, the healthy should still take measures to prevent C. diff’s spread. They still might contract it, and even if they don’t, they might spread it to those who are more vulnerable.
C. diff is spread through bodily fluids, so prevention of spread generally means following rigorous hygiene procedures around those with infections. (See below under Hygiene for Prevention of Spread.)
How I Got It: Antibiotics Plus Ulcerative Colitis
I wrote here about how I got C. diff. Briefly, my ulcerative colitis (another gut condition) was already flaring up when I had a gum graft that I had scheduled before the flare-up. When I developed a gum infection after the graft, I took antibiotics for it. Neither I nor my periodontist understood, then, that antibiotics during a colitis flare would put me at risk for C. diff. Since colitis already involves an out-of-whack microbiome, the antibiotics meant a double whammy for my good bacteria.
Sure enough, a few days after starting antibiotics, my C. diff symptoms began. I must have either been a C. diff carrier or been exposed to it somewhere, for instance in a health clinic.
I got a few take-away lessons from how I developed C. diff. One is that ulcerative colitis patients, and others with similar conditions that mess up the gut, should avoid elective procedures during flares. My doctors and I assumed that the gum graft wouldn’t affect my colitis—after all, as my GI doctor said, “the mouth is far from the colon.” Our mistake was forgetting that any medical procedure comes with the risk of infection, and infections often require antibiotics. In retrospect, I should have postponed that gum graft.
Another takeaway is to avoid antibiotics whenever possible, even outside of colitis flares. This goes for people with healthy guts, too, but especially for people like me with sensitive guts. Overuse of certain antibiotics is thought to be one of the causes of C. diff’s rampancy in recent years. There’s a movement among medical providers to be smarter about antibiotic use.
I have really taken this second lesson to heart. My experience with C. diff was so scary that I developed a visceral fear of antibiotics, especially because I’m now at higher risk of C. diff re-infection since I’ve had it once before.
Two years after I had emerged from the hospital, a doctor prescribed antibiotics for an infected sore on my neck. I broke into a cold sweat and begged her to give me another option. It turned out there was one: keeping the sore open and draining for a few days, which was what would have been prescribed in the days before antibiotics. Because my sore was already draining well, this was an option for me. Very fortunately, the infection subsided on its own and I didn’t need the antibiotics.
Most people wouldn’t have asked for an alternative to antibiotics in that situation. Most doctors wouldn’t have considered one. But there are sometimes alternatives, and patients and doctors should be more cautious about taking and prescribing antibiotics.
That said, antibiotics are sometimes essential and can be downright life-saving. When they are being considered, both the risks of taking them and of not taking them need to be weighed carefully.
Why My Diagnosis Was Delayed: The Danger of False Negatives
My C. diff symptoms began shortly after taking the antibiotics. I understood this only in retrospect, because at the time, I thought the C. diff symptoms were still just colitis symptoms. Only later did I understand how to tell the difference, which I describe below.
Suspecting C. diff, my doctors tested me for it…but the test came back negative. Twice. I now believe that these were almost certainly false negatives. Inaccurate results are common with C. diff tests, and there is not currently a standardized laboratory method for diagnosing C. diff.
Lack of accurate detection is one of the reasons an infection can be deadly, so it’s crucial not only to know about the existence of C. diff and test for it, but to understand its symptoms. If you and your doctors strongly suspect you may have it but you’ve gotten a negative test result, you may want to be tested again.
The false negatives were part of what endangered my life during C. diff. Without confirmation that I had it, my doctors couldn’t treat me for it. We had to assume my symptoms were due to my colitis flare, so doctors threw everything at the flare—all the immunosuppressive medications they could muster. None of them worked. I was eventually hospitalized for severe weight loss, but my condition kept deteriorating and I kept losing weight.
Doctors finally persuaded me to try a biologic, a last-resort class of med that suppresses a different part of the immune system from the meds I was already on. If the biologic hadn’t worked—and it wouldn’t have—they would have removed my colon to end the diarrhea. But by the time they would have done this, I would have become so gravely ill that I may not have survived the surgery.
Finally, after I’d spent two weeks in the hospital and gotten down to eighty-eight pounds (I’m 5’9”), a third C. diff test came back positive. This changed everything. To this day I believe that that test, and the doctor who prescribed it, saved my life.
Symptoms, and How C. diff Differs from Ulcerative Colitis
My C. diff infection took place entirely within a severe UC flare, which contributed to the confusion about diagnosis. Ulcerative colitis symptoms are similar to C. diff symptoms: severe, frequent, often bloody or watery diarrhea; abdominal pain; sometimes fever. When you’re reporting such symptoms to doctors, it’s hard for them to hear much difference between UC and C. diff.
However, although these two conditions may look similar on paper, I realized after the C. diff went away that the two conditions had felt very different. C. diff had involved several symptoms that were distinct from anything I had previously experienced with UC. These symptoms disappeared once the C. diff was treated, leaving me with “only” my UC symptoms.
Realizing this and looking back, I was able to also pinpoint the time when the C. diff symptoms had begun. This reinforced my belief that the first two C. diff tests had been false negatives. My C. diff symptoms had started just after I’d taken antibiotics for the gum graft.
Here are the things I experienced only when I had C. diff, and not when I had a bad UC flare but no C. diff:
1. Horrible, burning, searing pain.
Pain is common with UC, too, but my UC pain has always been different from what I experienced with C. diff. With UC, I get deep, diffuse, severe aches; I get cramps associated with bowel movements; I get stabs of pain in my left descending colon and bloaty discomfort and strange gurgling feelings all through my colon. I get subtle, tingly burning sometimes, so that I can feel my entire colon and its inflammation. But I do not get the kind of horrible burning I got with C. diff.
There was nothing subtle about this burning. This was a searing, torturous pain, the kind of pain that made me gasp and writhe around with my face contorted. It was always in the same place: the center top of my abdomen, which was probably my transverse colon. It felt like a vat of acid was eating a hole through my gut. I cried out; I sweated and moaned. On several occasions, I needed strong opioids such as fentanyl or dilaudid or morphine to control it.
That horrible C. diff pain was not always there, thank goodness. It would hit hardest in the afternoon, and for five hours or so every day, my focus was on just getting through it. Then it would subside in the evening.
I’m not sure if this pain is universal to sufferers of severe C. diff infections. My coworker’s daughter had something similar during her own C. diff infection, although her pain was in a different spot—the left side of her gut rather than the center. Still, this special, burning pain seems worth describing in case it is common, especially for other UC patients who are trying to distinguish between UC pain and C. diff pain.
2. Fever.
I may have had fevers with UC, too, but not like this. This was a constant fever, often above 101, occasionally up to 102 or 103. It was there most of the time I had C. diff. I alternated between heat and chills, and it was hard to control my temperature. At night, I would often sweat through my clothes and sometimes through my sheets as well. It was clear that my body had an infection of some kind.
3. Anorexia.
I learned in the hospital that anorexia means “loss of appetite,” whereas anorexia nervosa is the eating disorder. I had the former with C. diff. As desperately as my body needed nourishment, eating was usually totally unappealing to me. I actually asked my husband to verbally coax me to eat, as if I was a small child, offering me encouragement to help the food go down. As soon as my C. diff subsided, my appetite returned with a vengeance and I became so ravenous that I often ate 3000 calories a day.
4. Malaise.
I didn’t know how else to describe this feeling, which arrived every afternoon along with my burning pain. It wasn’t exactly nausea; it involved feverishness and lack of appetite and a general feeling of offness. Such offness is common with UC, too. Because I don’t have language to describe it, it’s hard to pinpoint how this offness was different from the offness of UC, but it was. During C. diff, I always had the afternoon “blahs,” and the feeling would pass, along with my pain, in the evening.
5. Odor.
Nurses report that C. diff diarrhea smells different from, and worse than, other diarrhea. Studies have found that experienced nurses can often diagnose C. diff by smell alone with reasonable accuracy! Progress has also been made training dogs to diagnose it in this way. I wonder if I would recognize it again if I smelled it? I hope so!
Life Under Quarantine
(This section is a bit of a deviation from practical advice—it’s just about aspects of C. diff that I found interesting! If you’re looking for more practical tips, click here to jump to the next section.)
Once I was diagnosed, I was put under quarantine. A sign was placed on my hospital door announcing that I was a C. diff patient and that everyone who entered, even for just a moment, must don a gown and gloves, which were to be discarded upon exiting the room. Hands were also to be washed before exiting. When you dried your hands after washing them, you were to use the same paper towel you had dried them with to open and close the door, thus refraining from touching the knob with your clean hands. All of this helped ensure that molecules of C. diff stayed inside my room with me.
I was allowed to leave the room, once I regained enough strength to go for short walks, but before I did so I had to change into a clean gown, and I was not allowed to touch anything outside of my room.
There were confusing and even humorous aspects to the quarantine. My family had to follow it along with everyone else, and they sometimes made mistakes.
One day, a nurse came in, seemingly to chat, then revealed that she was really here to gently lecture my husband Ron, who had broken protocol. Another nurse had seen him step out of my room with his gloves and gown still on, take five steps to the ice machine, and fill a paper cup with ice chips, which he then brought back to me in the room. He was being helpful, but he had just contaminated the ice chip machine that all the other patients used. The nurses were cleaning it now.
Chagrined, he apologized and said he would remember to take off the gown and gloves, wash up, and then put on a new gown and gloves the next time he stepped out.
My mom also pointed out inconsistencies in the protocol. What was she supposed to do, for instance, about her iPad, which she worked on in my room? If she touched it with her gloved fingers, which had also touched other things in my room, then wouldn’t the iPad be contaminated when she brought it back out of the room? Whereas if she took the gloves off to touch it, she’d be breaking protocol?
Her questions made me realize that hospital protocols aren’t about preventing every single germ molecule from touching everything clean, but more about minimizing such contact. When a phlebotomist is drawing blood, for instance, she first puts gloves on, then picks up the needle, uncaps it, and draws the blood—which means touching the skin around the vein with her somewhat contaminated gloves, since the needle and cap had been lying on a counter that may not have been perfectly clean.
Even experts made mistakes with the protocol. The worst offenders were doctors! My family and I watched multiple times as doctors left my room without washing their hands. Once, a doctor walked in without gloving his hands, chatted with me, shook my hand with his bare hand, then walked out without washing his hands—thereby exposing me to whatever he’d touched before, and also exposing the rest of the ward to my C. diff! (I didn’t realize all that till later.)
When Mom indignantly mentioned the doctors’ bad habits to a nurse, she smiled archly and suggested we call the doctors on it. Presumably, it was easier for us to do so than for the nurses to, given the hospital’s hierarchy. Mom did bring hygiene up with a doctor the next time she saw him break protocol. He was a little defensive, mentioning that he did wash his hands after leaving my room, but his habits improved thereafter.
One side effect of the quarantine was the copious trash it produced. Dozens of people entered and exited my room throughout each day: my family, my nurses, the diet hosts who took my meal orders and brought my meals in, multiple doctors, phlebotomists, and hospitality staff who cleaned my room. Each visit required a new gown and gloves. The little trash bin by my door was always overflowing and had to be emptied several times a day.
One nurse leader, Charlotte, had a solution to this problem.
“Watch this,” she said one day as she was leaving my room, the corner of her mouth twitching in a mischievous smile. She expertly doffed her robe and rolled it neatly into a tiny little ball, rather than just bunching it up and tossing it in the trash. Then she used one gloved hand to carefully peel the glove from the other, fitting the inside-out glove over the balled robe. Finally, with her clean, bare hand she removed the second glove, being careful to only touch its clean inside, and fitted the ball inside of it, so that the little ball of waste had become a tight, sanitary bundle just a few inches across. She then triumphantly dropped the dense ball into the trash. It fell with a satisfying thud, and it took up hardly any space.
“I’ve been trying to teach the nursing staff that trick,” she said ruefully, “but it doesn’t seem to be catching on.”
A nurse told me that according to the CDC’s records, I had contracted C. diff in the hospital. Since I had tested negative for C. diff the night I arrived, then tested positive two weeks later, officially I had gotten it here. One other patient in my ward had had it when I’d arrived; the CDC probably hypothesized that I’d gotten it from that patient. I became certain that this was wrong, based on the timing of my symptoms, described above.
But what I also believe is that a few people’s lax hygiene practices could indeed have caused the C. diff to spread in my ward. By the time I was discharged after a month, several patients had it, which was constituted an “outbreak.” Nurses began quarantining more patients and bleaching everyone’s rooms, not just the C. diff patients’ rooms. I shudder to think that I might have been one of the “patient zeroes” who brought this illness into the ward and from whom other patients got it—especially because most patients in my ward were old and infirm, and thus more at risk of dying from C. diff. I hope with all my heart that no one died from the C. diff I brought in.
All of this illustrates the importance of understanding hygiene practices for preventing the spread of C. diff. Without further ado, I’ll move on to…
Hygiene for Prevention of Spread: Bleach and Soap, Not Purell!
On to the practicalities.
C. diff is pernicious and persistent. It lives up to a staggering five months on dry surfaces if not cleaned off. It doesn’t respond to alcohol-based cleansers like Purell. It doesn’t respond well to soap, either, but scrubbing can wash it off hands—so washing hands with hot, soapy water, and scrubbing vigorously, is recommended for preventing its spread.
What kills C. diff best of all is bleach. Rooms and bathrooms that have been used by people with C. diff infections should be bleached thoroughly with a solution of 1 part bleach to 10 parts water.
Every day, in the hospital, a “hospitality host” would come in and wipe down all the surfaces in my room and bathroom with a bleach solution and would mop the floor with it as well. Once the outbreak had occurred on my ward, she started doing this with all the rooms, creating a lot of extra work for her.
My family and I realized that, assuming I did have C. diff before entering the hospital, I would potentially have left C. diff bacteria in my own house and bathroom, my mom’s house and bathroom, my workplace, and any doctors’ offices and hospitals I had visited. My family bleached our houses, and I contacted work.
After getting out of the hospital, whenever I had an appointment I let my health clinics know I had recently had C. diff, in case they wanted to bleach bathrooms I used. I tried to be excellent about washing my hands before touching anything in the clinics, as well as before and after I used their toilets.
And I realized that, forever afterwards, as someone with UC and on immunosuppressants, I should always be vigilant about washing my hands in public places and especially health clinics and hospitals. Other patients could have C. diff and not know it. And, again, all of us should be vigilant about hygiene, for the sake of the vulnerable.
Wash your hands!
Treatment: Antibiotics and Fecal Microbial Transplants
Once I learned I had C. diff, my mind quickly jumped to its most famous treatment: the fecal microbial transplant, or FMT. This is a fairly novel procedure in which a healthy person’s poop is inserted into the colon of a C. diff patient, allowing healthy bacteria to recolonize (pun!) and knock out the infection.
I had come across the concept of FMTs in my research on ulcerative colitis. They’re not particularly effective for UC, but, I had read, they are around 80-90% effective for C. diff.
And now I had C. diff! I might get to try an FMT!
Yes, I was excited about this. By the time you’ve had UC for a few years, you’re long past being squeamish about poop.
But, to my disappointment, my doctors smiled down at me and explained that while FMTs are FDA-approved for C. diff, they’re only approved after you’ve tried and failed the more conventional treatment, which is antibiotics. Only after you fail three courses of antibiotics can you be FDA-approved for an FMT and thus have it covered by insurance. You can get it on your own sooner than that…but you have to do the legwork of connecting with an FMT clinic yourself, and it will be hundreds or thousands of dollars out of pocket.
It may sound bizarre that antibiotics are the first line of C. diff treatment, since antibiotics are often the initial cause of infections. The difference is that the treatment antibiotics, vancomycin and Flagyl (metronidazole), kill C. diff bacteria. They also wipe out other bacteria, though, so the gut microbiome takes another blow as well.
But killing the C. diff is worth that blow, and if you have C. diff, your gut will need lots of rebuilding anyway. The hope is that, with successful antibiotic treatment, the microbiome can be rebuilt without C. diff taking back over.
Concerned about my poor microbiome, but feeling the need to surrender to doctors’ expertise, I accepted their prescription of vancomycin. The “vanco” was administered via a plastic syringe that a nurse used to squirt liquid into my mouth twice a day. The liquid was orange and tasted like cough syrup, which I like. It became my only enjoyable med. Taking it was made even more pleasant by my hope that it would finally knock out my C. diff.
When I told the doctors I was worried about my gut bacteria, they prescribed Florastor, a probiotic with a strain of purportedly C. diff-fighting yeast. I prefer fermented foods to probiotic pills, and I mentioned to a doctor that I typically rely on kefir as a “medicine food.” To my delight, she returned the next day having discovered a few scientific studies finding kefir to be promising as an adjunct C. diff therapy (see, for example, here and here). I appreciated her diligence. I decided to resume drinking kefir as soon as the C. diff was gone.
I was fortunate. Within a few days of beginning vancomycin, I noticed subtle changes that indicated it was working. By far, the most meaningful change was that my torturous, searing pain was lessening. It was still there but was not as powerful, and each day it seemed to release its grip on me a little more.
Within a week or so, in the afternoons I was falling asleep instead of breathing through pain. Meanwhile, my appetite was returning.
We weren’t totally sure the C. diff was gone, and doctors gave me a second course of vanco and added Flagyl, the other main C. diff antibiotic, just to be sure. But within two weeks of starting the treatment, we were fairly certain that my remaining symptoms—mainly diarrhea and cramping—were from UC, not C. diff. Soon thereafter, I was well enough to be released from the hospital and begin my long recovery.
Katie, thanks for this informative chapter from your life. “Wash your hands” is some of the best advice anyone can give to the population. Our public health depends on it. Hooray for Charlotte for her skillful “pack it tight” trash trick. I hope that she can make it SOP on the wards which generate volumes of PPE.
Thanks so much, Barbara! 🙂