In September 2016, we had recently gone from a family of four to a family of five, welcoming a baby boy six months earlier. We had spent the summer at the beach near our home in Orange County, California, with our oldest son (age six), our daughter (age three), and our new baby boy. Things weren’t perfect, but they were pretty darn close. Despite how tired we were, I remember my husband saying before he left to work one morning how happy he was. I told him not to jinx us.
That summer my husband, David, had two abnormal moles biopsied. Both came back as cancerous and had to be removed, one of the lesions had difficult margins and was located above his lip. He was referred to a plastic surgeon who also offered to repair his lifelong sinus disease (for which he often took antibiotics) and to correct his broken nose from a past surfing injury.
A few days after David’s surgery he developed cold sweats, diarrhea, and general discomfort. I called the plastic surgeon who brought us into the office, even though it was a Sunday. Both the doctor and the office nurse assured us that diarrhea was a common side effect of the post-operative antibiotics.
A couple days later my three-year-old daughter developed uncontrollable diarrhea despite being fully potty trained. I thought it was strange and immediately took her to her Pediatrician. Her doctor checked her lungs (for pneumonia), checked her vitals, and counseled me that it must be a viral illness or toddler’s diarrhea. I felt more at ease and took her home.
Her diarrhea took on a foul odor and she began going ten or more times per day, as well as developing mucus and flecks of blood in her stool. I called her pediatrician who ordered a stool sample. She told me that she would check for salmonella, ova/parasites, and C. diff. I had never heard of C. diff until that moment.
I received a call the next day that my daughter was positive for C. diff toxins and was told to begin her on the antibiotic Flagyl. A few days later my six-month-old son began having diapers filled with mucus and small amounts of blood; he also tested positive for C. diff.
My daughter’s diarrhea never seemed to fully resolve while on Flagyl, and on October 21st she began to experience rectal prolapses from the trauma of the relentless diarrhea. An on-call doctor from my daughter’s pediatrician’s office face-timed with me to confirm her first prolapse, and my husband came home from work to take her to the hospital. Later that afternoon my husband became increasingly ill and went to the Emergency Room (ER) where he was admitted for a C. diff infection, dehydration, and severe electrolyte imbalance. As the day went on I also began to experience stomach upset, and frequent bowel movements. I became worried and called my doctor who returned my call while driving to a Friday night dinner with his family. My general practitioner warned that C. Diff can quickly progress to a life-threatening situation and advised me to go to our local hospital to be evaluated and tested for C. diff.
My mother-in-law came and stayed with my two older children, while I brought the baby with me to the ER as he was continuing to have persistent and frequent mucus stools and respiratory symptoms. At the hospital, I gave a stool sample and was seen by a Nurse Practitioner who prescribed Vancomycin, as Flagyl is incompatible with breastfeeding.
I was discharged at 4:00 AM, continued to feel ill into the next day, and began taking the Vancomycin late that afternoon. After my husband was released from the hospital we set to work bleaching our home, washing bedding and clothing, and even had the house fogged with hydrogen peroxide by a local company that claims to kill C. diff spores. Over the course of the week I developed horrible orange diarrhea, rashes, tongue swelling, boils, hair loss, twelve-pound weight loss, extreme insomnia, and terrible back pain. I assumed my symptoms were those of a C. diff infection. I briefly lost consciousness on the ninth day of taking Vancomycin and was advised to return to the ER. I was shocked to learn that I had tested negative for C. diff while at the ER the week before and that the hospital had failed to notify me of my status and to cease the antibiotic. The ER doctor and Nurse Practitioner advised me to stop the Vancomycin and to take huge amounts of probiotics as my gut flora had been compromised by the Vancomycin, leaving me open to contracting a C. diff infection from my home and family.
I returned home and began to slowly recover from the Redman Syndrome. My six-year-old then developed diarrhea, a low-grade fever and extreme fatigue; he also tested positive for C. diff. Our pediatric infectious disease doctor advised that we treat him only with probiotics as having him on an antibiotic in a home full of active C. diff infections would likely serve to worsen his condition. He stopped having diarrhea within ten days and was allowed to return to school as C. diff is no longer considered to be solely a Hospital Acquired Infection, but also a Community Acquired Infection.
My daughter’s C. diff infection came roaring back after completing her course of Vancomycin; the first day she stopped taking the antibiotic she had 25 episodes of diarrhea. She also developed a 105.3 fever and would lay listless and pale; I feared daily that she would die. My pediatrician called me every night on her way home from the office and we would debate admitting her to the hospital. At an appointment with our pediatric infectious disease doctor at our local children’s hospital, my daughter qualified for a double-blind study of Dificid, but rather than risk another day of her not being treated (if we were on the placebo side of the study) I chose for her to have a Vancomycin taper, which would last three and a half months. If the taper failed we would continue with her gastroenterologist and move forward with a fecal transplant.
November 14th, I awoke at 4:30 AM with the urgent need to go to the bathroom; that day I went eleven times. The bowel movements were massive, loose, and painful, and my stomach was hot and tender. I had a pretty good idea what that meant, but was determined not return to the emergency room. I called some local doctors until I found a gastroenterologist who could see me the following day; he ordered a stool sample and confirmed that I had an active C. difficile infection. The perfect storm was complete: My entire family had experienced or was experiencing active C. diff infections.
The gastroenterologist advised me that I should see an infectious disease (ID) doctor as soon as possible and recommended a local ID who is a well-known C. diff expert. I called his office and was told that with the holidays approaching he would be unavailable until December 14th—a month away. I booked the appointment and prayed that I could make it that long.
I called other offices in my area until I found an infectious disease specialist/general practitioner who could see me on November 18th. At the appointment, the doctor examined me and reviewed my test results. It was his opinion that I should not be treated for the C. diff as treating with antibiotic therapy would only further damage my good gut flora and leave me open to reinfection from my environment.
I spent the next 22 days trying to treat my C. diff infection with every natural remedy I could find: raw garlic, turmeric, quercetin, chamomile, green tea, kefir, yogurt, kombucha, sauerkraut, kimchi and 150billion CFU of probiotics per day. I had no appetite and lived on rice, chicken, toast and protein drinks. Food seemed to burn my mouth and stomach. My insides burned and had stabbing pains, and my lower right flank bore a searing pain that would keep me awake through the night. Every time before I felt the need to go to the bathroom I would become horribly ill and break into a cold sweat. I bled profusely every time I “went,” even if I was only going pee, a river of blood would fill the toilet. At the time, I couldn’t tell if the blood was coming from my colon or from the trauma of “going” so many times. I couldn’t leave my home for fear of having an accident if away from the toilet, and the fatigue and overwhelming sickness made it nearly impossible to go anywhere except necessary doctor’s appointments, which presented a considerable challenge. Between trying to care for myself and our sick children we were forced to hire a home health service. We were only able to find one home-care company who would agree to work with us due to our C. diff infections. Other families at my son’s school and sports teams wondered if we had moved, and on the occasions that I was forced to go to his school for pick-up they would cautiously (and politely) ask if my daughter and I had the flu (or cancer).
On December 5th, I saw my general practitioner who has treated me for over a decade, he was shocked by my weight loss (twenty pounds) and was very concerned with my physical and emotional state. I told him how I was constantly going to the bathroom and that often all I would pass was mucus, blood, and pieces of tissue. I described the intense back pain, nausea, sickness, malaise, and how food seemed impossible to eat. My doctor immediately called the infectious disease doctor who I was scheduled to see and had me moved to the top of the waiting list, I received a call that night that a spot had opened for December 7th.
By the time my appointment arrived, I was hardly passing any stool at all, although I felt like I had to “go” continuously. When I “went” all that I would pass was mucus, blood and pieces of my colon; the C. diff had taken over my large intestine and was trying to kill me from the inside.
The next morning it took everything I had left to get myself in the car and get to the infectious disease doctor’s office. The ID doctor prescribed me Dificid, a narrow spectrum antibiotic which targets C. diff bacteria and leaves beneficial gut flora intact. We spoke about the potential side-effects of Dificid and he advised me that there were very few reported adverse effects. The ID doctor explained that in the future I should not take an antibiotic unless I had a confirmed/cultured bacterial infection, as my intestines had been seeded with C. diff spores which take an incredibly long time to leave a person’s body (if ever). The Dificid successfully treated my C. diff Colitis, and I gradually began to stop passing tissue and blood from my colon.
The baby continued having diarrhea and mucus until March 2017. Our pediatric ID doctor felt we should not treat and use only probiotics. Our pediatric gastroenterologist (the only pediatric GI in our area who performs fecal transplants) felt that we should consider treating, and we found ourselves in the middle of a conference between our pediatrician, GI specialist and ID doctor. Thankfully his infection resolved using only probiotics.
My family’s C. diff nightmare lasted from October 2016 to March 2017; for six seemingly endless months I would shuffle between my children constantly changing gloves, changing their diapers, washing my hands, bleaching our home, going to the bathroom and praying for an end to the sickness. I was instructed by my infectious disease doctor (and my daughter’s infectious disease doctor) to follow hospital cleaning procedures, bleaching all the sinks in our home twice per day, bleaching the shower after each individual’s use, changing and bleaching bedding every two days, bleaching the kitchen every day, mopping our floors with a bleach solution, strict glove use, and constant hand washing. We were told to bleach every page in every children’s book that we wanted to keep, if there were toys or books that could not be cleaned then we should throw them away. We threw away truckloads of stuffed animals, bedding, clothing, toys and books. Even with the home-health aid coming eight hours per day there was always a child who was crying in pain or sickness. My children desperately needed me, and I could barely take care of myself. Watching my children suffer while simultaneously being sure that I was going to die was a heartbreaking experience that has permanently changed me.
I hope our experience can in some way help others and raise awareness of this terrible disease. C. diff is no longer only a Hospital Acquired Infection or a disease of the infirm or elderly; C. diff is in our communities and is increasingly afflicting younger patients and postpartum women with devastating effects.
Read more about Angela’s journey at www.gutsymother.com.