Thank you for sharing!
By: Peggy Lillis Foundation
Written by Ashley Z.
I shared my story a little over a year ago when I was still battling my C. diff infection and wanted to give an update. You can read my story here: cdiff.org/story/ashley
I was 27 years old when I was first diagnosed with C. diff after a five-day Cipro antibiotic treatment for a UTI. About a week or so after finishing the medication I knew something was wrong. I was dismissed by several doctors telling me it was just a stomach flu and prescribed me strong antidiarrheal medications. I became very ill very quickly and was hospitalized. There, I was diagnosed properly with C. diff and IgA deficiency (which makes me prone to more infections). I was told it would be cured by a quick two-week Flagyl antibiotic, but I barely made it four days into treatment before I was hospitalized again for dehydration, sepsis, and atrial fibrillation. I was switched to vancomycin and did much better, though sadly I relapsed on all three treatments.
I kept being told by my infectious disease and gastrointestinal (GI) specialists that I was “young” and “would recover quickly,” however that was not the case at all. On my third treatment relapse, I found out I was pregnant. I was placed on a low dose of vancomycin throughout my entire pregnancy to ensure I would not relapse. I did have a healthy baby boy, however I had a rough pregnancy with stomach pains and urgency issues. After postpartum, I ended my ten-month low dose vancomycin treatment only to relapse in twelve days. I was put back on vancomycin and advised a fecal microbiota transplant (FMT) would be my best option.
I had my first FMT in April 2017 and relapsed five days later. I was hospitalized again for seven days because not only was I battling C. diff, but also the Norwalk virus. My GI decided on what he considered to be the “most aggressive treatment” of Dificid followed by my second FMT. I had my second FMT in May 2017 and have been C. diff free ever since. Sadly, I have thought I was relapsing a few times only to find out that I suffer from severe Post Infectious Irritable Bowel Syndrome (PI-IBS) and food intolerances. I have a very restricted diet post C. diff and continue to need extensive follow up care. I am also on two medications to help with daily pain and incontinence issues. I also take probiotics to help reestablish the good bacteria.
I was sick in total for 22 months with six relapses/recurrences. I lost twenty-three pounds and heavily relied on my husband for help with daily activities. I also ended up leaving my job during the infection and recovery as I did not have the strength to endure eight-hour work days.
This infection is scary, and without the message boards and groups on this site I don’t know how I would have made it through. There isn’t enough awareness about C. diff and even less on C. diff recovery. I am very thankful that this site was available to me for information and guidance. Now, I am four months post-C. diff and back to work full time with a one year old. Learning how to be thankful for every day no matter what form it comes in. I do suffer anxiety and possible PTSD from the experience. But, I survived. And others will too, you just need to arm yourself with knowledge and a good support system.
I am so sorry you suffered like that, Ashley, and I am so glad you survived! I sincerely hope that you see significant improvement of your post-infectious symptoms over time. Sometimes the improvement is so slow that it’s hard to perceive, but it’s there! Thank you for sharing your story. Wishing you and your family peace and wellbeing.
Thank you for sharing. I had CDiff but have been ok for the last 15 months. I also feel PTSD and am terrified of getting any infections and needj g antibiotics. I carry around a list of high risk for CDiff antibiotics and always show it to doctors if I need meds.
My name is Diane . i was with C,diff too. Finish vancomicyn 9 days ago. Ihave lost 18 pounds and continue losing pounds after a negativo result for c.dff. Do you know how long does it take to recover my weight. I dont have more diahrrea but feel weakness sometimes is this normal.?