The doctors thought I had a virus, but it was C. Diff

As told to Nicole-Audrey Spector

Last January I had a bad sinus infection, so I went to the emergency room. The doctor looked at my ears for about two tenths of a second and told me there was fluid in them. I needed antibiotics.

I was relieved. Antibiotics would cure me!

But the days that followed were terrible. I had a lot of stomach pain and was becoming increasingly sensitive to most foods. I had had mild symptoms associated with irritable bowel syndrome (IBS) for a long time – although I was never officially diagnosed. These symptoms – especially the urge to go to the bathroom – got worse. Sometimes I narrowly avoided having an accident.

Extreme IBS-like symptoms persisted even after the antibiotic treatment ended. So I completely changed my diet and stuck mainly to toast, bananas and rice. But the diarrhea persisted.

I have a demanding, high-pressure job. One day I was at work and suddenly I was so weak I felt like I might pass out. I had a fever and the urge to go to the bathroom was still strong.

I left work and went straight to see my doctor. I explained that I had just been treated with antibiotics for a sinus infection, which had cleared up, but now I had all these new symptoms, including abdominal pain, severe diarrhea, and fever.

She briefly examined me and said I probably had a virus. Nothing to do. Just lie down.

So I laid down for a few days. During that time, I barely ate. My fever was between 99.4 and 102 degrees.

Eventually, I mustered the energy to return to urgent care. I explained all my symptoms. The HCP said what the last HCP said: probably a virus. They told me I could go to another lab to submit a stool sample for further testing, but honestly I was so sick and weak that the thought of rushing to the lab was just plain wrong. too heavy. I chose to go home and continue to beat this so-called virus.

A few days later, I had diarrhea 10 to 15 times a day, accompanied by a fever. I curled up in bed, my heart pounding, and I thought I was probably going into septic shock and was going to die. (I had Googled the symptoms because I hadn’t gotten a solid diagnosis or treatment plan from my healthcare professionals.)

That night, my husband convinced me to go to the emergency room. On-site health professionals performed blood tests and collected urine and stool samples. I was in the hospital for about six hours while they gave me IV fluids and painkillers. I was sent home with a treatment plan to treat the colitis, but then received a call from the emergency doctor when I returned home. It wasn’t colitis. It was C. diff., a bacteria that causes diarrhea and inflammation of the colon. I was prescribed antibiotics and told to clean my house thoroughly, which of course I did.

I was not given any follow-up instructions or plans to move forward. But luckily I knew C.diffsince I work in the medical field.

Amy and her husband, 2023

Although I can’t say with 100% certainty that the antibiotics I took for the sinus infection caused C.diff, I can knowingly say that they could have. According to the CDC, people are 7 to 10 times more likely to get C.diff while you are taking antibiotics and for the next month. This is because antibiotics kill all the bacteria in your gut, both good and bad. I had taken a probiotic along with the antibiotics, but that may not have been enough to even out the imbalance.

To treat the C.diff, the ER doctor sent me home with different antibiotics. Eventually, I thought, my life would return to normal. I whitened my entire bathroom to prevent a recurrence.

But shortly after finishing that round of antibiotics, the symptoms returned.

I went back to my original healthcare provider, who refused to give me more antibiotics without taking another stool sample. Frustrated but helpless, I did another stool test. The next day, the doctor called me back to confirm what I already knew: I had C.diff.

The path that followed was rocky for a while. In all, I had C.diff four times. I lost 14 pounds in a few months. Every time I got sick, I met another healthcare professional who didn’t understand the breadth or depth of this illness. I thought I would be sick for the rest of my life.

A C.diff the support group on Facebook is what saved me. The group reassured me that my condition would improve and let me know that they too had found that many in the medical community knew very little about the disease.

At the suggestion of support group members, I found a brilliant and compassionate infectious disease specialist. By the time I sat down with her, my symptoms had subsided and it seemed like I no longer had an active infection. But a fifth recurrence was a real possibility.

I was terrified of living C.diff again, but my new doctor eased my fears with a concrete plan. She said that if I got it again, I could take a newly FDA-approved fecal microbiome medication that comes in a capsule form that you can take by mouth.

After that meeting with the infectious disease specialist, I was happier than I had been in months. Finally, someone who could help me had listened. I don’t underestimate how lucky this makes me. What also qualifies me as extremely lucky is the fact that I have not had a recurrence of infection in over nine weeks. This is the longest I’ve spent!

However, my luck does not erase the months of agony that I experienced facing health professionals who did not understand. C.diff. This does not erase the agony endured by others struggling to obtain diagnosis and treatment. The medical disdain I experienced during my journey with C.diff is amazing. I knew how important it was to be my own advocate, but my action was not being heard.

But I finally found the healthcare professional who could and would help me. So if you live with C.diff – or any disease that is not well understood by the medical community – don’t give up. Find a support group so you can vent, get validation, and get helpful suggestions. There is a light at the end of the tunnel. I know, because I went through that tunnel.

This educational resource was created with the support of Seres Therapeutics and Nestlé Health Science

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