Table 4 Illustrative quotes left by participants in the open-ended fields

Psychological consequences

“I panic all the time and my anxiety is through the roof”

“Never was depressed prior to infection. Now life as I knew it has drastically changed. Sometimes I feel I will never feel normal again.”

“I have documented PTSD, anxiety and panic attacks directly related to the trauma of having a family wide endemic outbreak of C. diff effecting all members of my family”

“I have felt suicidal because of it many times.”

Physical consequences

“I don’t have the energy anymore to be physical, I am too tired to do anything!”

“My sleep cycle is messed up, due to always being in so much pain. I have trouble falling and staying asleep, then during the day I often feel tired.”

“Lost 50 pounds all muscle tone lost skin and bones malnutrition”

“I throw up for no reason (even if I havent eaten yet)”

Relational impact

“I feel like everyone is afraid of me.”

“My family treats me like a leper.”

“Other people don’t seem to understand how my life changed post CDif.”

“There is a social stigma associated with c-diff. People never consider you “cured”. I am sometimes excluded from activities due to the type of illness it is.”

Adaptation impact

“I have to wear adult diapers. If I don’t wear them, then I have it on my mind through the night that I will have another accident.”

“I can’t eat anything other than the BRAT diet!”

“I don’t travel far from home anymore”

“Work going to outdoor summer activities like parks, hiking, amusement parks, biking, swimming. Anything that takes me away from a bathroom or a place to clean up and change clothes after accidents”

Professional and financial impact

“was already in financial trouble. I am on the verge of loosing everything.”

“I lost my job of 12 years mostly because my productivity went down”

“I can’t work at all”

“After 6 months of being on disability I am bankrupt. It has ripped through our house financially and caused “