I had never heard of Clostridium difficile until I was infected.
I was scheduled for a routine hysterectomy to remove a uterine fibroid, a fairly simple procedure lasting only a couple of hours. My surgeon informed me that she could not perform the surgery unless there were antibiotics in the IV for prophylactic use. I reluctantly agreed. I made it known to my doctor that I did not want antibiotics given to me unless I absolutely needed them, but in reality I was given no choice but to have them in the IV. I was given Cefotetan, a cephalosporin with a somewhat reduced activity against Gram-positive organisms and a broad-spectrum antibiotic known to be in an antibiotic class that has a high risk of Clostridium difficile (C. diff).
Exactly one week after surgery I became violently ill. I developed constant, painful, yellow diarrhea with mucus and blood. It smelled of death. That’s the only way I can describe it. I was going to the bathroom at least seven to ten times every hour. I had severe nausea and vomiting. I couldn’t even keep water down. I had horrific abdominal pain. It felt like hot knives were slicing through me. I developed sores all over my tongue and the corners of my mouth. I can’t describe the excruciating lower back pain I had. It was like nothing I’d ever felt before.
I ended up in the emergency room. I was given fluids to hydrate me and morphine for the pain. A scan of my colon revealed it was enlarged. A stool sample confirmed I was infected with Clostridium difficile. The emergency room doctor told me it was caused by the antibiotics given to me during my surgery in that very hospital.
I was sent home with a course of the antibiotic Flagyl. The severe diarrhea became slightly less frequent, but I was still very sick. Six days after I finished the Flagyl the diarrhea started again. Two days after that I was back in the ER with severe dehydration and excruciating pain. I was so dehydrated that the emergency room nurse had to look for a vein between my toes because she couldn’t find one to use in my arms. Again, I was given morphine and fluids. This time I was sent home with Vancomycin, a very strong antibiotic with horrible side effects—severe nausea being one of them.
Seven days into the fourteen-day course, I was not getting any better. In fact, I felt worse. I still could not keep any food down. I was prescribed pain medication, so I could at least have short periods of rest. Even the prescription anti-nausea medication wasn’t working. I could feel my spirit flickering. I didn’t know where to turn. The doctors at the hospital talked about it like I’d caught the flu—just take your medicine, drink lots of fluids, and you’ll be fine. I was terrified.
I reached out to my naturopath, who happens to be my primary doctor. She suggested I look into a fecal transplant (or fecal microbiota transplant, known as FMT). She referred me to a specialist in transplants and microbiomes. I had my first FMT the very next day. Although they are considered experimental, I qualified for it because my C. diff was treatment-resistant and recurrent, or refractory. Within 24 hours the diarrhea stopped. I was thrilled. I was still weak, but I could see the light of day. I began to get nutritional IVs (this bypassed the digestive system to get my body the nutrients it needed without the pain of eating) and was feeling a little stronger.
Nine days later I got sick again. I called my specialist, and we scheduled a second FMT for the next morning. The next two weeks were pure hell. I continued to need pain medication to sleep. I wasn’t able to eat and subsisted largely on cranberry juice with a pinch of salt so my electrolytes stayed somewhat balanced. I was on round-the-clock activated charcoal, berberine, allicin and heavy doses of probiotics and supplements to help heal my gut flora and regrow a healthy microbiome. My body felt like it was on fire, and some days I couldn’t even lift my head from my pillow for a sip of water. I crawled to the bathroom when I couldn’t walk. I would curl up in a ball on the floor because I was too weak to lift myself into bed and didn’t want to wake my husband. It was a nightmare I couldn’t wake up from. One night my husband and I just held each other and cried. Many nights I quietly cried alone.
My specialist ordered another stool test. We did a polymerase chain reaction (PCR) test, which identifies actual DNA from C. diff vs. just looking for toxins. We also tested for both toxins A and B. The good news was that my results were negative for the C. diff toxins. The bad news was that the stool tested positive for the C. diff antigen, GDH. The bacteria were still present in my digestive tract, which had been colonized, but they were not producing a detectable level of toxins. It’s complicated biology and has to do with the formation of bacterial communities, biofilms and l-forms. These hardy bacteria are just really hard to eradicate. It made my head spin.
Nineteen days after the second FMT we scheduled a third. I hoped against hope that this one would be the last one. My doctor’s knowledge and compassion were invaluable. She wouldn’t stop until the infection was gone and I was well again. Within 48 hours of the transplant the diarrhea had stopped. The nausea and flu-like symptoms still came and went. I was extremely fatigued. Some days I could do small things, like make myself a cup of tea or take a shower without my husband holding me up, but then needed to rest for hours at a time. Some days I still couldn’t get out of bed because of the pain and exhaustion. I remember trying to lift a basket of laundry and take it up the stairs. I ended up in bed for three days.
A week later I did yet another stool test. All traces of the GDH antigen were gone. No toxins, no antigen, no C. diff. It was a very happy day. There is no doubt in my mind that the fecal transplants saved my life. I am thankful every day for my doctor and my stool donor.
My doctor told me I would be in the acute recovery phase for about three months. My stomach was ulcerated, and eating was extremely painful. My raw tongue began healing, but I still could not taste fully. There were very few foods I could eat, and after I did eat I would need to lie down for hours. The C diff. caused me to develop enterocolitis, which basically means it had also damaged my small intestine. I continued strong probiotics and supplements for inflammation. Everything I put in my body had to be organic and antibiotic-free.
My lower back, left hip and right thigh continued to be in constant pain. I could not bend over to dry my toes after bathing or tie my shoes. I woke up in pain every morning. I tried acupuncture and therapeutic massage. I had good days and bad days. I was hyper-vigilant about the frequency, color and odor of my stool. I was constantly asking my doctor, “Is this normal? Does this mean I’m getting sick again?”. I had nightmares and would wake up in a cold sweat, thinking I still had C. diff and was dying. She assured me that these things were normal after such a traumatic illness. She also told me it would be about one year before I felt like I did before I was infected.
As of this writing it has been five months since my last FMT. I just had surgery for a condition caused by the rectal damage that occurred. It was in a different hospital, and this surgeon agreed I would receive no antibiotics. I continue on my supplements and see a therapist on a regular basis. This illness has taken a toll, both figuratively and literally. My body and mind have suffered, that is obvious. The literal cost of this infection is very real too. The transplants, surgery, doctor visits, supplements, medications, nutrition IVs and food have caused us to go into debt that we are slowly trying to dig out of.
I continue to get a little stronger each day. I still l have good days and bad days. Because I had relapses, I know I am at risk of a recurrence. I try very hard not to think about that, but it lingers in the back of my mind. I will never take antibiotics unless they are a last resort. I try to stay positive, and I think I succeed most days, but I would be lying if I said it was easy. Some days I get so tired of the pain and the inability to do the things I was once able to do, but I know I’m lucky to be alive. I remind myself of that constantly.
We have to allocate more funding to research and fighting this deadly bacteria. We are now in damage control, fighting against the clock to save those who contract this illness. For too long antibiotic overuse has become an accepted practice in the medical community. It is too late to go back; C. diff is here, and it is out there. But it’s not too late to keep more superbugs from being created. We also must advocate for antibiotic stewardship and for enforcing the regulations already in place. It’s a complicated issue on many levels, but with education, funding and advocacy we can and will continue to fight against Clostridium difficile and the devastation it leaves in its wake.