Living With C diff: A Young Woman’s Battles With a Typically Older Person’s Infection

Minnie had to battle a lot of infections when she was young, and therefore was regularly prescribed antibiotics. She explains it got to the point where her providers would look to be proactive and put her antibiotics when they thought an infection was coming.

“I had been working with an OBGYN for some other issues, and she just kept putting me on antibiotics. And eventually, I started getting these weird cramps and my bowel movements changed. And she didn't know what to do with that,” Minnie explained. “So she tried to treat me for a little while and then shipped me off to a GI [gastroenterologist], which was the right choice.”

Although she credits her GI as someone who has helped her, Minnie’s age threw her provider as he did not expect her to have C diff at such a young age and thought it was irritable bowel syndrome. Finally, after about year, her GI tested her for C diff.

This was her official introduction to C diff, and the beginning of multiple battles.

“Even being as young as I was, my microbiome had just been absolutely devastated by these constant antibiotics,” Minnie said.

FMT
One of the newer treatment modalities for people with recurrent C diff is fecal microbiota transplants (FMT). Minnie had her first one when they were still in their infancy stage and she said you even had to find your own donor when she began the process. Her GI was an early proponent of FMT and was 1 of only 2 providers performing the procedure in her state of Utah. She says the procedure has improved through the years and each time has helped her to ameliorate her symptoms.

Dealing With Care Woes, Help Through the Peggy Lillis Foundation
Early on, Minnie’s insurance covered her first 2 FMTs. However, during COVID-19, she had another bout of C diff and things had changed. Stool donor banks were closed because of the pandemic and she had lost approximately two-thirds of her weight. And this last FMT was not going be covered because hospitals didn't want to perform it. Fortunately, the Peggy Lillis Foundation (PLF), a C diff patient advocacy organization, stepped in on Minnie’s behalf and helped facilitate a dialogue between a pharmaceutical company and her.

Minnie was attending PLF’s annual summit, and they had a high-level employee from a pharmaceutical company that provided the FMT who was speaking at the meeting. At this point, Minnie’s health deteriorated greatly, and she had been told to fill out a living well and get her affairs in order.

There was an open session at the summit, and Minnie was able to speak face-to-face to the high-level employee.

“So I asked him directly, ‘how am I supposed to do this? You're here, you are seeing the effects of this. How are you going to look me in the eyes and tell me no?’ And he didn't. He said, ‘I need you to call them; have your doctor send your papers in again, tell them that I told you, yes, and then have them call me.’ And within two weeks, I had it scheduled.”

“I actually would not be here today if it weren't for being part of the Peggy Lillis Foundation,” Minnie said. “The networking there provided me with the ability to get that final FMT in the middle of a pandemic, which saved my life.”

Anyone Can Get C diff—Truly
Through her experience, she does want providers and the general public to know that anyone can contract C diff.

“C diff does not discriminate,” Minnie said. “It doesn't care what color you are; how old you are; whether you've had it before or not—it is going to absolutely ravage anything that it can if it can take over.”

Additionally, she would like to see clinicians take a conservative approach to prescribing antibiotics. “I think for providers, it is really just be cautious,” Minnie said. “If you can think of a way that your patient can get better without the antibiotic, ‘like, you've had a cold for a week, so let's give it some more time before we treat it as a sinus infection.’ That's a good example and one that I’ve experienced a lot. See if your patient's body is going to work through it.”

Contagion is partnering with PLF in this ongoing series, Living with C diff, as Minnie and others bravely talk about their experiences dealing with the condition.