My life forever changed in the summer of 2017. I had back surgery in June and things did not go as anticipated. As a way to ward off infection from a surgical incision that refused to close, my surgeon put me on Clindymyacin, for 40 days to be exact. I ended up back in the operating room to repeat the procedure and vividly remember telling him I would not take more antibiotics. The surgeon’s fear was that if I got an infection, it would go straight to my spinal cord, and then things would be bad, really bad. I don’t blame him for any of what follows, as I know they were looking out for me, I truly believe that. What I didn’t know was how bad things were about to become.
On September 3rd, 2017, I began having excruciating back pain around my incision and cramping in my lower abdomen, I had no diarrhea. I developed a fever and we called the surgeon. We were directed to the Emergency Room for evaluation, fearing the worst, an infection. Several blood tests were done and my white cell count was elevated. I was treated for pain and fever and sent home. Later that night, diarrhea started and didn’t stop. On September 5th, I made an appointment with my PCP who immediately tested me for C diff. Later that afternoon, my husband took me to the ER for dehydration, and another C diff test was done. I was treated for dehydration, told to return home, and that they would call as soon as lab results were in. My journey began…
The following day I was notified that my test came back positive for C. diff and I was started on Flagyl. We were told nothing else. My husband and I researched C. diff on our own (Dr. Google) but were left to figure things out for ourselves. After several days I started feeling better, but diarrhea never fully stopped and I never felt back to “normal”. October 22, 2017, was a typical Sunday for my family with our two daughters, soccer consumes our weekends. We were at the local soccer field when I started “not feeling right.” I had a strange feeling in my stomach, something I can’t really explain and would best describe the feeling as being like butterflies, but like they were a swarm of angry ones. Suddenly all of my energy was zapped. I went home and straight to bed, which is abnormal for me. I slept for several hours and woke up with a fever and chills, I was not in a good place. My husband, bless him, could tell something was not right. He made arrangements for our kids to go to our friend’s house and we made the dreaded trip to the ER. Upon checking in, I was immediately put in isolation and again tested for C. diff. My white count was through the roof and I was in septic shock. I was admitted into the Intensive Care Unit where I would stay for 3 days, and I was started on Vancomycin. I do not remember much of my first stay as I was in and out of consciousness, as with most of my ICU stays. It became very clear to me that I was starting a fight that I wasn’t sure I was going to win.
I was discharged and began tapering off of Vanco. I began to feel well again, but not totally back to myself. I still had an underlying feeling that something was not right. I had to remain strong and put up a front for my family. They had to think that I was okay, that everything was going to be fine. It is what I had to do as a mom, with little ones at home who had no clue what was going on and were scared. They could not come to see me when I was admitted to the hospital. My GI doctors did not know what was going on either, it was beyond frustrating. It became very clear to me that there was no one I could turn to with 100% trust and faith. Who knew enough about this awful illness to guide me in the right direction? I was losing hope.
On November 20, 2017, the Gastroenterology clinic I was working with ordered a colonoscopy to determine if they could see anymore active C. diff spores in my colon and test for Crohn’s disease. I was having tons of complications: diarrhea constantly, pain when I would have a bowel movement, and just not feeling well. My test came back negative, and you can imagine how frustrated I was. I had a sinking feeling like maybe I was going crazy, thinking I was still sick when I wasn’t. Deep down inside I knew something was still wrong.
On January 6th, 2018, C. diff would rear its ugly head again. Back to the ICU with sepsis and another round of Vancomycin, this time was worse than previously. The sepsis battle this time would be a fight with everything in me. I am told there were times that my family didn’t think I was going to make it through the day. I remember asking the Lord to take me, I had given up, I could not physically nor mentally fight anymore. This illness had won and I had nothing left to give. I spent 6 days in the hospital, and I cannot remember how many of those days were spent in the ICU but at some point was transferred to a regular room. During this visit, the doctors planned a fecal matter transplant with my husband as my donor. We became the first ones at our local hospital to have an FMT, it was a big deal. Several nurses in the wing I was in were very interested in the process. After the procedure, I was discharged and within a couple of days, I was feeling really good. I felt like maybe my battle with C. diff was over. Boy was I wrong!
On January 22nd, 2018 I started feeling icky. My GI called in a prescription of Dificid and as my husband picked the prescription up at the pharmacy, I took a turn for the worse. I felt worse than I had in months with fever, chills, pain, cramps, and you name it, I felt it. He made a phone call to my doctor’s office and we were instructed to take a pill and then make the trip into the ER. Once again, we were in isolation, and tests began. At that point, we were the familiar face in the Emergency Room. The staff knew who we were at Admitting and I had my own room. Nice but oh so sad. I was admitted to ICU with sepsis yet again, it was like a broken record – C. diff, sepsis, more meds, repeat. I felt like this battle was never going to end and no one knew how to end it, I lost all hope. No one knew enough about C. diff to help. At this point, I had been on every drug and done every treatment to cure it. My hope of getting better was gone, my mental state was bad. I spent 7 days in the hospital on Dificid, while also getting a Vancomycin enema twice a day. During this time I was seen by GI and a hospitalist who would be the one I in part credit with saving my life, his name is Dr. Anthony Lee. He worked diligently with the GI to think outside of the box which is what led to the Vancomycin enemas and what eventually led to a referral to Infectious Disease and the one person in my life who knew anything about C. diff. Here is the part of my story where things take a turn for the better.
Dr. Jennifer Marfori, Infectious Disease doctor at Providence St. Vincent Medical Center is my lifesaver. She is my knight in shining armor and was brought into my life when hope was gone. She has so much knowledge about C. diff that I was blown away. She immediately prescribed an infusion of Zinplava, which had to be done in a cancer treatment facility at another hospital. The infusion took just over an hour, it didn’t hurt and didn’t make me feel bad during the procedure, but I did have a few side effects of nausea for a day or two. Within a few days, I was feeling better and as time went on I started feeling back to myself. She is like no other doctor I have ever had contact with. She texted me during and after my infusion to make sure things were going smoothly. She texted me in the days following the infusion to make sure I was feeling okay. In fact, she is still in contact with me today just checking in every so often to see how I am doing. I owe her the world and I will never be able to thank her enough for everything she has done for me.
C. diff has changed my life forever, I deal with the countless ramifications it has left behind. My body will never be the same, mentally or physically. I have colitis flare-ups regularly, am now gluten intolerant, and am on a regimented eating plan because of the damage that it has done to my colon. I am not sure that will ever be repaired, and time will tell I guess. Mentally, the stress of being in and out of ICU and dealing with sepsis and the effect my illness has done to my family has caused me great angst. I deal with the anxiety of wondering if I will get sick again, fear of hospitals, and post-traumatic stress. Things that have taken me years to work through to be able to know that it is okay, none of this was my fault and it is okay to talk about and be open about. The more I share the more I am healing myself and helping others who have been keeping their battle with this horrible illness in the closet.