Jessica L. C. diff Story
My C. diff story began at the end of my pregnancy with my second child, my son, who was born in October 2015. I was put on Clindamycin after the Metronidazole I was prescribed six or seven times for bacterial vaginosis that caused me to go into preterm labor failed to resolve the infection. I had finished the antibiotic when I ended up in the hospital for delivery, 3 weeks early. Also, at that time my boyfriend was on a course of Clindamycin for an abscessed tooth. We believe that was the beginning of our battle with C. diff.
By the time my son was two months old; me, my boyfriend, our newborn son and my 3-year-old daughter had all been diagnosed with C. diff infections. The day after Christmas 2015 my boyfriend was admitted into the hospital the first time, he lost close to 50 pounds in the course of a month. We thought we were going to lose him and had begun writing a will. I was at home with a brand-new baby, a toddler, and a boyfriend in the bedroom on his deathbed. I had no idea how to handle it. I could barely get off the toilet myself. The kids were constantly screaming and pooping, it was a complete nightmare. My boyfriend was started on Metronidazole, he had a bad reaction, then on vancomycin, which failed. The second time on vancomycin, he failed and had a bad reaction. Then onto a 10-day course of Fidaxomicin and a medicated enema for three months. He ended up with ulcerative colitis and is now on Mesalamine for the rest of his life, but he has been C. diff free coming up on two years now.
Because I was breastfeeding I was started on vancomycin (Metronidazole is not compatible with breastfeeding). I failed Vancomycin twice, then did a 10-day course of Fidaxomicin which I also failed. I moved on to a long pulse of Fidaxomicin (20 days on, 5 days off, 15 days on, 6 days off, 10 days on, 7 days off, 5 days on, 8 days off, 3 days on, stop) which finally worked for me. I have been C. diff free almost two years as well. I have taken antibiotics twice since completing treatment, each time with a course of Fidaxomicin and have been fine.
The kids were each put on Metronidazole which made them both a lot sicker. We were referred to a pediatric infectious disease specialist who recommended we immediately stop the antibiotic treatment and move forward increasing breast milk for both kids, exclusively breastfeeding my son for as long as possible and suggested me and my boyfriend drink breastmilk. Very slowly my children started getting better and have been C. diff free almost 2 years now as well.
We finally started seeing negative test results about a year later around Christmas of 2016.
I’ve done the math; with the cost of prescriptions, medical bills, probiotics/prebiotics, cleaners, and gloves, missed work… Somewhere in the ballpark of $40,000 and still going up, is what C. diff has cost us financially.
I remember when I first learned all the details and it really started to sink in: what C. diff is, the bacteria, the spores… How hard it is to kill; how deadly it can be. I totally freaked out, I lost it. I threw away thousands and thousands of dollars of stuff that couldn’t be soaked in bleach because I was afraid it would keep making us sick. I ruined everything we owned with bleach. the carpets, the furniture, the curtains, the walls, the floors. I was on my hands and knees with a toothbrush, I chemically burned my throat and lungs locking myself in rooms with the bleach because I didn’t want the kids breathing the fumes. I was diagnosed with obsessive compulsive disorder, anxiety and post-traumatic stress disorder long before I ever learned about C. diff, so it has really affected me.
When my son was eight months old the doctor noticed he had fallen behind developmentally. I had kept him up in his bouncer during our C. diff infections. I couldn’t let him be on the floor that’s where the C. diff was, right? I took away his tummy time when we got sick because I was afraid that he would die. I wanted to keep him safe. Instead, I put him behind, so we had to get him into early intervention. That meant letting people into my house, into my C. diff zone. I spent hours a day with a bleach routine every day for a very long time.
All of a sudden it was my son’s 1-year birthday. I realized I had lost a whole year to C. diff. I could barely remember things about the first year of my son’s life, the third year of my daughter’s life; all I can really remember is sickness and insanity. I decided I had to put a stop to it, it was time to try to live again. I started to slowly cut back on my routines and started to cut back the days of the week that I did them. I enrolled in a C. diff study where they tested different areas in my house and when I saw test results starting to come back negative for the house and for our stool tests, I decided it was time to try to go back to “normal” again, whatever that was.
Last summer we bought our first house! First order of business, we replaced both of the toilets and hosed the entire house in bleach… And had the house swab tested for C. diff, all tests were negative, so it’s been a fresh start. We have been in our new home for a year, so far so good! I only bleach once a week now and use probiotic cleaners in between. We still take probiotics every day and if I take an antibiotic I have to take Fidaxomicin with it. Luckily the kids haven’t had to take any antibiotics yet (knock on wood) and my boyfriend is doing good so far. He remains on Mesalamine, but no major flares so far. Hopefully, we can keep on keeping on. The future is looking a lot brighter now than it did a few years ago, finally, there’s a light at the end of the tunnel and it doesn’t smell like bleach anymore!