Living With C diff: A Trauma That Lingers


This is the first in an occasional series with members of the Peggy Lillis Foundation. Here is an opportunity to hear about people’s experiences, lessons learned, and the new treatments that can lead to hope and not the hopelessness people have been living with during their ordeals.

Pam McCollister says she was a happily married mother of 2 young girls before her experience with C diff. That all changed in September of 2017. She was placed on antibiotics prophylactically to prevent any infections following spine surgery.

This is when she first started experiencing C diff symptoms which came on very quickly. McCollister says it started with a sharp stabbing pain in her low back that radiated into her abdomen. She then began the first of several visits to her providers and local emergency room.

She went from the ER to her primary care provider back to the ER in less than 48 hours. She was tested for C diff by both her provider and the hospital. She was sent home from the ER to await the results but not given any more information. Some of the biggest challenges for people with C diff is the lack of education and a limited treatment plan given to them.

“[I] was never given any information on what C diff was. So we were kind of left to determine what to do as far as if it was contagious.” McCollister said. They found themselves asking questions. “How do we prevent this? How did I get it? Speaking to so many different people, this is a common occurrence.”

McCollister’s experience is frequently mentioned by other people who have had C diff including the symptoms of C diff frequently believed to be associated with other health issues, not understanding the severity of people’s conditions, and before the advent of newer microbiome therapeutics, vicious cycles of C diff recurrence.

McCollister had four stays in the ICU and was placed on three different antibiotics.

“I was in and out of the ICU with sepsis and C diff; they coincided with one another. I've dealt with countless ramifications from the damage that C diff has done to my colon, [including] IBS, colitis. I can no longer digest certain foods,” McCollister said. “So I would say that my condition is not completely resolved. I will deal with that for the rest of my life."

C diff really had a lasting effect on not only her health, but also her family as well.

“The trauma that C diff caused my family at the time, I didn't even consider," McCollister said. “But now it's starting to show in my kids. My youngest has some anxiety issues. So when I start to feel ill, her anxiety comes out because I think she reverts back to, I am going to the hospital and is Mommy coming home? My oldest bottles all of her emotions inside and just recently has actually opened up about how she felt with things…and they were at such a young age that they were not able to come and visit.”

Although she has gone through great trauma, in the next interview segment, McCollister discusses what it means to have found friendship and a community through the C diff patient advocacy organization, the Peggy Lillis Foundation.

Tune in this week with more insights about Pam’s story as well as others who bravely talk about their experiences in living with C diff. Contagion is working with Peggy Lillis on this series.

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