Please let me start out by saying that I am a former national champion gymnast.
C. diff and my knee replacement changed my life forever. I got C. diff during a stay at Mercy Hospital in Minnesota for a knee replacement in June 2016. I went undiagnosed for three months. I was diagnosed by my primary doctor and put on vancomycin for ten days. The burning in my stomach and intestines was debilitating. My pain was and always has been right below my belly button, even one-and-a-half years later. On a pain scale of one to ten, it was definitely a ten! I looked six months pregnant because my intestines were so swollen.
My knee kept getting worse. It had swelled and was very hot and red. My orthopedic doctor, Dr. O’Keefe, did not believe me. During the surgery, he “forgot” to take out an extra bone in the same knee that was giving me pain and needed the knee replacement.
During a visit with this doctor three months after the surgery, (I did raise my voice, as I was so upset) I said, “How many people have you given C. diff to before, “forgot” to remove a bone that was supposed to come out during a surgery, and on top of that, got an infection in the knee replacement? Now I have two very serious infections, and being that one of them is C. diff, I can no longer take antibiotics.” He just got up off his chair, left the room, and never came back.
I got C. diff back again a couple months later while I was searching for a new orthopedic doctor. I was put on vancomycin again for ten days, and I got Red Man Syndrome from the vancomycin pills.
I applied at the Mayo Clinic in Rochester, Minnesota since I had seen an orthopedic doctor there previously. I was hoping they could address both of my serious infections: my knee and C. diff. Well, they called me back and told me I was not accepted into their program. I asked why, and the person I spoke with said she did not have to give me a reason. I sobbed.
So now I had to search for two new doctors: An orthopedic specialist that does revision knee surgery and a gastrointestinal specialist that specializes in C. diff.
I found a C. diff doctor through www.peggyfoundation.org who performs fecal microbiota transplants (FMTs) and a doctor who specializes in knee revisions from another internet search (both at the University of Minnesota). My gastrointestinal specialist would not do an FMT until after the infected knee prosthetic was taken out. That was scheduled for January 2017.
I had the prosthetic taken out and was given intravenous (IV) vancomycin with the surgery. IV vancomycin gave me C. diff again and also gave me kidney failure. They had to take my peripherally inserted central catheter (PICC) line out. (By the way: I tested positive for C. diff with a solid stool.)
So now my infectious disease doctor at the University of Minnesota put me on a ten-day course of Dificid. My insurance company denied my prescription, and we had to fight them to get it paid for. I have now been on Dificid four times in ten months, and each time my insurance company denied my doctor’s order. My doctor and I had to fight my insurance company to pay for the only drug I am not allergic to.
I got C. diff again a few months later when I was not on any antibiotics (C. diff infection number five). After that infection cleared, I had a colonoscopy and endoscopy that showed now I had Lymphocytic Colitis, which mimics C. diff.
After that procedure, I never got better. I tested two more times with a polymerase chain reaction (PCR) test (all of my tests had been PCR), and I believe they were false negatives because even drinking water gave me excruciating pain.
All this while for eighteen months, I had infections on and off and a knee that was cemented straight. I was on crutches for that. Weird rashes started appearing over my body. Even while taking a warm shower, I would break out in a rash.
My fatigue is terrible, the pain in my intestines is 100 times worse than the pain in my knee. I am on my sixth C. diff infection and scheduled to finally have an FMT.
My life has changed forever because of C. diff and the knee replacement. I am hoping for a good outcome with my FMT soon, and the knee replacement has been put off indefinitely. I am disabled now with my knee. I am very afraid of the costs associated with the C. diff infection, my knee disability, and my insurance. The doctor who did this to me just walked away, leaving other doctors to try to fix what he would not. There were no consequences for him.
My hope would be that more research will be done and that we can at least slow down this C. diff infection rate. Doctors are not getting the correct education on C. diff. There needs to be much more education on this infection, as more and more people are getting it in the community and by taking antibiotics. I also believe there is a huge population of people that are not counted as having C. diff, as PCR is the main test doctors are told to do. Not many doctors are testing for both the A toxin and the B toxin.