Ignorance was bliss; this was how my C. diff journey began. In 2009 I was a healthy 26-year-old woman, I had just found out in the fall that I was expecting my first child. As a first-time pregnant mother, I was overjoyed with the adventures that would come with my pregnancy. Little did I know what that really meant. Due to some health and pregnancy complications I had two surgeries, two rounds of antibiotics and two extended hospital stays within weeks during the beginning of my second trimester. Looking back, the perfect storm had been created and it would only take two weeks to find out what that storm would look like.
My storm began in February of 2010 when I woke up in the middle of the night experiencing terrible abdominal pain two weeks after my last surgery and hospital stay. My mind was racing and I had no idea how to comprehend what was going on with my body; was I having contractions, was there something wrong with my baby? I was terrified and tried everything I could to alleviate the pain and not wake my sleeping husband. After a few hours of pain, I finally woke my husband and told him that I needed to go to the hospital. We arrived at the hospital and headed straight towards the labor and delivery floor. I was admitted to the hospital and immediately hooked up for monitoring. For hours I lay in the hospital bed still wondering what was wrong with me because the monitor showed I was not having contractions, yet my abdominal pain continued. It was around eight in the morning when the nurse asked when my last bowel movement had been, and if had it been normal. I thought back through the last 24-hours and remembered that I had a normal bowel movement the day before. I thought it was a strange question, but what did I know? The nurse said if I could leave them a stool sample that would be helpful, but otherwise, they saw no reason to keep me in the hospital any longer and I would be heading home once the doctor saw me.
I sat in the hospital room unhappy that the hospital staff couldn’t find a reason for my pain and frustrated with myself for being at the hospital and wasting everyone’s time; I began to get myself together to head home. As I packed up my belongings, I had a feeling that I did, in fact, need to have a bowel movement. In the bathroom on the toilet sat the ominous white specimen collector and the cup to get a sample of my stool. As asked I collected my specimen and alerted the nursing staff. That day turned south very quickly. The pain that I had in the wee hours of the morning increased as did the frequency of my bowel movements, which went from formed stool to severe diarrhea in a short period of time. Before the doctor was in to see me to discharge me I believe I had somewhere around six episodes of diarrhea. My stool was tested and it came back that I had Clostridium difficile, C. diff, and was not leaving the hospital anytime soon.
I spent the next week in the antepartum unit being treated for my C. diff and feeling like a prisoner, as I could not leave my room. All visitors and staff who entered my room were outfitted in biohazard gear from the movies. Lucky for me I was treated by my OB and an infectious disease doctor who worked diligently to get me healthy as quickly as possible. I felt very confident in their prescribed treatment, Vancocin, to which my body responded well. I was discharged from the hospital after just over a week from when I first arrived with what I thought was pregnancy-related pain. But instead, I ended up being diagnosed with a disease I had never heard of, which turned my body into a mess and changed my life forever. In order to stay as healthy as possible, I continued to take Vancocin for the duration of my pregnancy and began a tapered dosing for the 12 weeks post delivery.
While I would love to say that my C. diff journey ended in 2010, it has not. C. diff has returned five times since being diagnosed almost eight years ago. Once you have had a C. diff infection you are much more like to experience a reoccurrence. Like many other who have suffered C. diff infections, I have never forgotten the feeling, and as a result, I have been able to quickly confirm and treat my reoccurrences. I continue to always fear another C. diff reoccurrence and have taken as many precautions as possible. All of the medical staff I see have seen me in some stage of my C. diff journey and have been great advocates for my recovery. The greatest pushback that I have encountered with C. diff has come from the insurance company. They have made it difficult to get Vancocin from the beginning and have continued to do so with each reoccurrence. Even when my doctors have prescribed Vancocin because they believe it is the best line of treatment for me, insurance continues to deny it. In order to get the Vancocin, I have had to speak to the insurance company and get additional paperwork filled out by my doctor and their medical staff or they will continue to deny the claim. Unfortunately, the denial of the medication on my last reoccurrence resulted in an emergency room visit. While I never want to take up the ER’s time and space I knew the seriousness of my situation and went out of necessity. If my C. diff goes untreated the progression of the disease occurs quickly and becomes very serious.
I have never felt normal since being diagnosed back in 2010 because I always fear a reoccurrence and know that it can come at any time. C. diff is beyond my control and has had an impact on not only my body, but also financially on my family. This is a silent epidemic that so many of us fight alone because we don’t want to talk about poop/diarrhea/bowel movements. Why are people not being better educated about this disease? Why are insurance companies pushing back on a person’s means of treatment? How can we stop this disease from harming others especially our families?