Contributed by Judy Dexter’s Clan
Our mom went to the hospital in December 2012 when she was having difficulty breathing. She was admitted for a lung infection and treated with antibiotics for eight days. Our family was not prepared for the torment that the following months would bring.
Three days after being discharged from the hospital, she had uncontrollable diarrhea which resulted in severe dehydration. Her doctor prescribed her a series of diarrhea medicine, and she was given instructions to change her diet to bulk foods. It was another 2 1/2 weeks, upon returning to the hospital, that she was diagnosed with Clostridium difficile (C. diff).
We knew little about it, but learned very quickly. It became second nature for our family to put on protective gowns and gloves before visiting her room.
January brought powerful antibiotics by mouth and enemas. When those didn’t work, the doctors started discussing colon removal surgery. We didn’t understand how we got to this point and intervened, looking for alternative treatments. That’s when her new gastroenterologist recommended a stool implant. They made two attempts, one week apart along with Vancomycin but the C. diff continued to ravage her colon.
Colon removal was again brought to the table, but with a high mortality rate in people over 65, we again searched for more options. Her doctors became aware of a procedure called Diverting Loop Ileostomy & Colonic Lavage. It was minimally invasive and provided her with several rounds of powerful Vancomycin directly to the top of her colon. The results were promising as the colon swelling was reduced and the C. diff appeared to be in remission.
However, after having to treat a serious non-related infection with broad antibiotics, it returned again. She lost so much weight and eventually had to have a feeding tube inserted.
We didn’t learn until later after consulting with a doctor from John’s Hopkins, Vancomycin or any other antibiotic should NOT be used in tandem with stool transplants. There shouldn’t have been ANY antibiotics before or after the procedure. We had speculated this before the transplants, but were assured by the hospital that it wouldn’t be an issue.
Mom was fighting a two headed dragon. Each time she would fight off an infection or start to get stronger from her lengthy hospital stay….the C. diff would return and knock her back down.
Being confined to the hospital and debilitated with C. diff was excruciating for our mother. It deprived her from the thing she loved the most, time with her kids and grand kids. We lost her May 30, 2013 just six months after it all began. She was the matriarch of our family. We hope that in telling her story we can bring awareness to this devastating condition.
We found a valuable tool during this experience to aid in the communication with family members…..the website Cozi. We were able to organize our visits with mom on a calendar, share health reports, and journal for close family and friends.
We would like to send our deepest gratitude to the doctors, staff, and especially the nurses at Mercy Medical and Johns Hopkins Hospital. They truly became our second family, throughout our Mothers care.