• LOCATION: State of Residence
  • AGE: N/A
  • SOURCE: Community Acquired

In December of 2019, my husband got sick with C. diff. It was after he was prescribed antibiotics for what they thought was a case of diverticulitis. In hindsight, it’s clear he may have simply had c-diff all along. He was treated with vancomycin after the C. diff diagnosis and was instantly feeling better. He’s one of the fortunate ones.

In March of 2020, I became very ill. I had what seemed like a sinus infection and C. diff, and told my doctor that at the time, via tele-visit, but it was suggested I had Covid because “so much time has passed since your husband’s C. diff” and Covid was surging in our community. So, I isolated myself; prepared to wait it out. Unable to stay hydrated because of the vomiting and diarrhea, I went to the ER where I was also told I had Covid. No tests for covid were done, but that was their best guess.

I suffered with extreme nausea and diarrhea. I was unable to get out of bed for more than bathroom visits. I stayed isolated because “It could be Covid”. Through the entire ordeal, I was tested for Covid three times, all negative, even for antibodies. I had many other doctor’s visits during this time. Some said I was “just anxious”. Some ordered tests that were inconclusive. My primary care doctor, at my suggestion, finally tested me for C. diff and it was negative. But I came to find out that the lab used had errors in their system, and they weren’t handling C. diff tests correctly. So perhaps that was not a correct result. But not knowing that, my primary care doctor decided to try some antibiotics to address my month-long sinus symptoms, even though I still had very severe GI symptoms. If I didn’t have C. diff before, I got it then.

Fast forward to June and the GI doctor I’d been sent to told me “you are just anxious. all your tests were normal”. But I knew anxiety couldn’t make me this ill. By then it’d been about 4 months in bed, and 45lbs of weight lost. So, I reached out to a GI doctor who had done a routine colonoscopy on me years ago. He instantly thought I must have C. diff, and possibly always dis. So, he ordered another C. diff test, and it was positive. This was at the end of June. I started vancomycin and ended up in the hospital 4 days later anyway, with hemorrhagic diarrhea and a swollen colon. The hospitalist told me I was lucky to be alive. I honestly barely remember the stay, aside from being worried about getting covid on top of C. diff.

I have since had C. diff return three more times. I was treated with vancomycin, and it would always come back, the last time as long as 8 months after being “cleared”. I was referred to an infectious disease doctor who prescribed Dificid, which I learned is the best antibiotic for C. diff, but not prescribed due to the cost. I was potentially eligible throughout this two year cycle for an FMT procedure, the gold standard for recurrent C. diff, but it was cancelled by the FDA during the pandemic. So, I had to wait, and took Dificid while awaiting the procedure, which I finally had in August of 2021. I still worry C. diff will return and I am still often very sick. Not as much as I was in 2020, but C. diff has damaged my colon, and I have extreme post infectious colitis. As long as I stay clear of C. diff, it’s a small price to pay. What made the entire ordeal so much worse were the misdiagnosis (complete with medications that can make c-diff worse), the medical gaslighting (I can’t tell you how many times I was told it was just “anxiety”) and the specter of covid-19.

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