I am a C. diff survivor. What I know now and what I want others to know.
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“This must be cancer.” That’s what I thought when I was hospitalized for a second time in two months.
One month prior, I was hospitalized with diverticulitis, which was treated with strong intravenous antibiotics. Then I found myself back in the hospital. This time, it was worse than diverticulitis. I had never been so sick in my life. The abdominal pain was unbearable, and the diarrhea, nausea, and vomiting were continuous.
It took three months, and multiple hospital stays before a test for a Clostridioides difficile (or C. diff) infection eventually came back positive. I had never heard of it, but I thought it could be treated, and I would get better. Unfortunately, I was only half right.
The C. diff infection had taken a stronghold in my body and wouldn’t let go. During each hospitalization, I was treated with a handful of standard antibiotic protocols and occasionally a course of monoclonal antibodies. These would briefly lessen the worst of the C. diff symptoms, and I would be released back home to continue to heal.
Unfortunately, I wasn’t informed there was a good chance that the infection would come roaring back, so, it was baffling to me that my body and my life were ruined over the subsequent three years by multiple C. diff infections. Finally, I became a C. diff survivor following a Fecal Microbiota Transplant. Within eight hours of the procedure, I began to feel better.
The horrors of my C. diff journey left me with so many questions, which, in turn, led me to the Peggy Lillis Foundation. It was there that I found my experience was not unique. I met others who had similar stories of misdiagnoses and treatment-resistant infections. Still, others had a close family member who had died from this urgent threat.
I know now that C. diff can affect anyone and that there are things patients and families can do. First, talk to a healthcare professional about your risk of developing C. diff infection when starting an antibiotic. People are more likely to get a C. diff infection while or soon after taking antibiotics. If you develop symptoms of C. diff infection while or soon after taking antibiotics, contact a healthcare professional to discuss and be evaluated. Now, as a C. diff survivor, I support others in their journey to recovery and advocate for better awareness, policies, and treatment options.
For more information about C. diff, visit www.cdc.gov/cdiff.
Learn what CDC is doing to prevent C. diff infections: C. diff Initiatives | C. diff | CDC
For more information about appropriate antibiotic use, visit www.cdc.gov/antibiotic-use.
20 comments on “I am a C. diff survivor. What I know now and what I want others to know.”
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I am a C-Dif survivor by the grace of God. I was hospitalized for a full 9 months due to this.
In 2017 I went in to have a colostomy reversal and almost died because of it. I did not have it upon admission to the hospital. It was contracted while there. I do not wish this on anyone. I have been fortunate enough that I have not had further problems. The pain is not even describable. Upon entering my weight was 240 lbs, upon discharge I was at 131lbs. I had to learn to eat and walk again.
Please take all precautions you can. This will be with me for the rest of my life.
I am so sorry to hear about Maryann’s story. I can sympathize.
I had C-diff twice. Once in 2011 and once in the beginning of 2012. It was life-changing. Ever since C-diff, I have developed severe food allergies to many foods, I became gluten intolerant, can no longer drink alcohol. I feel like I go into battle every day with foods and beverages. Nausea, stomach pain and diarrhea.
I have to be very careful of what I eat or drink.
I avoid taking any type of antibiotic now, unless I am very sick.
I have seen many Allergists. They say I am allergic to all histamine foods now.
Is there any type of cure for this?
My mother contracted C-Diff from antibiotics given for a UTI. She also was in latter stages of dementia/Alzheimer’s. I washer only caregiver and my first reaction was “why would they over prescribe medication to to point that this would occur? This is a highly infectious illness and I had to use every precaution not to be infected myself. She was able to recover .Me on the other hand will never forget the trauma of dealing with C-Diff!
I’ve had c diff twice in the last 7 years. Both times were extremely painful and days in the hospital.
I had c-def a few years ago . Wow it was not fun
My 82 year old mom died of c-diff in 2013. No one should have to suffer like that and especially because some damn health worker didn’t wash their hands.
My mother died from complications of C diff and it needs to be brought to the forefront of side effects of taking antibiotics. Fecal transplants were just coming out to try to cure this silent killer. Glad you survived
I caught C.diff after having my colon removed. The doctors said it was unheard of because C.diff forms in the colon. Not only did I get it once, I got it five times over a two year period. I too finally recovered after a fecal transplant. It is a horrible infection that will make you think you are dying. I have not had a reoccurrence of it since the fecal transplant eight years ago. I make sure I let all doctors that I see know that I have a history of C. Diff and I don’t take an antibiotic unless there is no other choice.
My mother had four hospital stays of a week long each time since July; we was finally able to get the doctors and insurance to approve the drug Vowst, which is the fecal implant pill that the FDA approved she still somewhat weak but looking forward to getting better each day.
I am a cdiff survivor! I truly thought I would die before it ended. Several months of constant suffering and hospitalization. I finally got an antibiotic that worked. But I feel like me initial infection were caused by a medication I was taking for osteoporosis every few months that after researching, I found out it lowers your immune system to infection.
It’s been six years now since I got over it.
I went through this same thing, and, never could heal from all the antibiotics. Finally resulted with having a colectomy and an iliostomy.
I have had Cdiff twice. Doctors have suggested the transplant.I’m 81and I don’t want to press my luck.The Doctors say I have a good chance of getting it again.
Last December I had an Aorta femoral bypass done . While in the hospital I too developed C Diff. I had no idea what was wrong with me. I’d never heard of C Diff. It was devastating,embarrassing and depressing. Ten days of horrible liquid meds, my kids wouldn’t come near me. I wouldn’t wish it on my worst enemy. It is horrific.
I got it after starting the z-pac protocol for the flu. Almost died.
I wasn’t diagnosed properly for 10 mths and had severe cdiff infection. Was performing mammograms and worked but was going 17-20 times a day and very weak. Wasn’t on antibiotics and cdiff specialist thinks got it from tea at restaraunt cuz emplyoyee didnt wash hands. Was sick for years lost my job and had to go on SSD then was diagnosed with collagenous colitis which is from cdiff infections. After 14 years Im better but still have complications, it was miserable.
I’m so happy that you found help. And thank you for your activism.
My late daughter had C.Diff after a broken leg and surgery. The doctor told us she would never really get over it. I hate that anyone could get it.
I too am a c diff survivor. 5 years ago I was in and out of the hospital. Finally I had gotten rid of it.
Had c-diff..after 5 months of different antibiotic treatments, it would not stay away..had a mft (fecal transplant) took it away immediately..3 years later, has never returned..
This is such a sad story and we applaud Maryann and PLF.
1. Clostridium difficile has been identified on stethoscope diaphragms and is alcohol resistant.
2. We have developed a system validated to immediately and easily shield patients from alcohol resistant bugs and all MDRO’s on stethoscope diaphragms: https://www.youtube.com/watch?v=Zxn5eBZhrSM
3. This infection (CDI) is recognized as the leading cause of gastroenteritis associated death and the most common cause of healthcare associated infections in the United States. Hospital and LTC acquired CDI attributes to increase length of hospital stay, 40% higher expenditure for each diagnosed case, higher readmission rate and mortality.