I have followed Peggy’s story, and was happy to have found some info regarding C. diff online when I was recovering from one of the five recurrences of C. diff that I’ve had. I grew up in Brooklyn, had my first apartment in Marine Park, and am close to Peggy’s age when she became sick, but I haven’t yet shared my story of the lovely C. diff monster!

I suffer from Rheumatoid Arthritis (RA), which is an autoimmune illness. It’s treated with immunosuppressive medications which in turn sometimes cause a secondary infection or illness as a result of my immune system being suppressed. I was taking Humira and came down with a sinus infection. Since I worked for an internist for 15 years, I treated it myself with amoxicillin. I can’t say I became sick immediately. I would have bouts of fevers, chills, and such fatigue I literally couldn’t stay awake. That went on for a couple of weeks, but I attributed it to taking Humira and having a lousy immune system. The final straw came when I had a very bloated feeling in my stomach, some diarrhea, and an overwhelming fatigue. I cannot explain how “cold” I felt. It was August 2013, brutally hot outside, and I was wrapped in blankets with the windows shut. I was freezing cold and just had enough strength to get myself to the bathroom and back. I insisted that it was the Humira. After three days, my husband said, “This is crazy; you cannot go on like this.” I hate to think what could have happened had I not listened.

I worked for a doctor, so he sent a nurse practitioner to my home who immediately told me I needed to go to the hospital. Seventeen hours in the ER and a CT scan later, the diagnosis was Colitis, but no one was sure what the Colitis was from. When I was finally moved to a room and was able to leave a stool sample, the culture came back positive for C. diff. I was immediately moved to a room where I was isolated from other patients. I started to feel better once I was given Vancomycin, and was released four days later.

That was 2013; I have had four more recurrences of C. diff since then. Since my RA was becoming more painful and causing numerous problems, periodically I would take Prednisone to ease the inflammation. I was too afraid to start any other medications (such as the Humira) for fear of a relapse. However, the Prednisone proved just as bad. Within a few days of starting to take it again, the C. diff was back. Anti-inflammatory meds; the C. diff came back.

I switched GI doctors, and my new doctor put me on Dificid. That worked for a while, but any little glitch with my immune system would cause the C. diff to return. I don’t know if this holds true for other people, but each time I had a recurrence of C. diff, I felt worse than the time before. I really did become “sicker” with each bout–and fearful that it would kill me. After the fifth bout, my doctor felt that the next move should be an fecal microbiota transplant (which I had done in October 2014). I have been C. diff free since.

My biggest problem now is my fear of having to take Humira again because my RA has progressively gotten worse. I am terrified, yet in pain from the RA most of the time. I am in such fear of a recurrence. I would be interested to know of other autoimmune patients who’ve had the same problem.

I am amazed at the number of people who have no idea what C. diff is. I knew what it was, but thought it was more of a hospital acquired infection. People need to be educated. C. diff infections are becoming more and more common within the community. When I was in the hospital, although they cleaned the room daily, I never saw it once cleaned with bleach. I didn’t know until afterwards that bleach is the only thing that will kill the spores. Since it wasn’t immediately known I had C. diff, I was originally put in a room with another patient. I often wonder if she became ill since I don’t know if anyone cleaned the bathroom that I used in that room. Hospitals need to be more vigilant in monitoring these patients. More than once I had someone enter the room without a gown or gloves. Some personnel were completely oblivious to the precaution signs outside the room. There are plenty of reasons why C. diff spreads in hospitals; I saw some of them happen every day.