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As told to Nicole Audrey Spector
Last January, I came down with a bad sinus infection, so I went to urgent care. The doctor looked in my ears for approximately two-tenths of a second and told me there was fluid in them. I needed antibiotics.
I was relieved. The antibiotics would cure me!
But the days that followed were awful. I had a lot of pain in my stomach and was increasingly sensitive to most foods. I’d long had mild symptoms associated with irritable bowel syndrome (IBS) — though I’ve never been officially diagnosed. Those symptoms — particularly urgency to go to the bathroom — became much worse. Sometimes I’d just narrowly avoid having an accident.
The extreme IBS-like symptoms continued even after the course of antibiotics ended. So I totally changed my diet and stuck mainly to toast, bananas and rice. But the diarrhea continued.
I hold a high-paced, high-pressure job. One day I was at work and suddenly was so weak that I felt I might pass out. I had a fever and the urge to go to the bathroom was as violent as ever.
I left work and went straight to see my healthcare provider (HCP). I explained that I’d just been treated with antibiotics for a sinus infection, which had cleared up, but that I now had all these new symptoms, including abdominal pain, severe diarrhea and a fever.
She briefly examined me and said I probably had a virus. Nothing to do. Just lie low.
So I laid low for a few days. During that time, I barely ate. My fever wavered between 99.4 and 102 degrees.
Eventually I mustered the energy to go back to urgent care. I explained all my symptoms. The HCP there said what the last HCP had said: probably a virus. They told me I could go to a different lab to submit a stool sample for further testing, but honestly, I was so sick and weak that the idea of scrambling to get to the lab was just too much. I opted to go home and continue to ride out this so-called virus.
A few days later, I was having diarrhea between 10 and 15 times a day, along with a fever. I curled up in bed, my heart racing, and thought I was likely going through septic shock and was going to die. (I’d looked up the symptoms on Google since I hadn’t gotten a solid diagnosis or treatment plan from my HCPs.)
That night, my husband convinced me to go to the ER. The HCPs there ran blood tests and collected urine and stool samples. I was in the hospital for about six hours while being given IV fluids and pain meds. I was sent home with a treatment plan to treat colitis, but then received a call from the ER doctor when I got 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 given no follow up instructions or plan moving forward. But, luckily, I was actually familiar with C. diff, since I work in the medical field.
Amy and her husband, 2023
Though I cannot say with 100% certainty that the antibiotics I took for the sinus infection caused the 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 on antibiotics and during the month after. This is because antibiotics kill all the bacteria in your gut, good and bad. I’d been taking a probiotic with the antibiotics, but that may not have been nearly enough to even out the imbalance.
To treat the C. diff, the ER doctor sent me home with different antibiotics. Finally, I thought, my life would get back to normal. I bleached my entire bathroom to avoid a recurrence.
But it wasn’t long after I finished that round of antibiotics that the symptoms returned.
I went back to my original HCP, who refused to give me more antibiotics without taking another stool sample. Frustrated but helpless, I took yet 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 got C. diff four times. I lost 14 pounds over a couple months. Every time I’d get sick, I’d end up meeting another HCP who didn’t understand the scope or depth of this disease. I thought I’d be sick for the rest of my life.
A C. diff support group on Facebook was what saved me. The group gave me confidence that I would get better and shared that they, too, had found that many members of the medical community know 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 died down, and it appeared that I no longer had an active infection. But a fifth recurrence was a real possibility.
I was terrified of living through C. diff again, but my new doctor calmed my fears by coming up with a concrete plan. She said if I got it again, I could take a newly FDA-approved fecal microbiota medication that comes in a capsule you can take by mouth.
After that meeting with the infectious disease specialist, I was the happiest I’d been in months. At long last, someone who could help me had listened. I don’t underestimate how lucky that makes me. Also qualifying me as tremendously lucky is the fact that I haven’t had an infection recurrence in over nine weeks. That’s the longest I’ve gone!
Still, my good fortune does not erase the months of agony I experienced while dealing with HCPs who did not understand C. diff. It doesn’t erase the agony others who struggle to get diagnosis and treatment endure. The medical dismissiveness I experienced during my journey with C. diff is astonishing. I knew how important it was to be my own advocate, yet my self-advocacy was unheard.
But I did eventually find the HCP who could and would help me. So, if you’re living with C. diff — or any disease that’s not well understood by the medical community — don’t give up. Find a support group so you can vent, be validated and get helpful suggestions. There’s a light at the end of the tunnel. I know, because I’ve been through that tunnel.
This educational resource was created with support from Seres Therapeutics and Nestle Health Science
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