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Christian John Lillis and Liam Lillis, co-founders of the Peggy Lillis Foundation, recently wrote a guest blog post for Prebiotin. PLF was proud to have Prebiotin as a Gala sponsor and supporter of the mission to build a nationwide C. diff awareness movement by educating the public, empowering advocates, and shaping policy. You can read the guest post here.
I have suffered from cdiff for 3 3/4 years since being told in hospital after emergency surgery for obstruction, sepsis, eschemia. I am now 72 1/2 year old female. not the greatest of health. Immune system, etc. Emergency surgery, on my 69th birthday after years of constipation,
etc it. was performed by a general surgeon, not colorectal surgeon. I had no idea what it was, was not told what it was, was put on Vancomycin for 10 days then released to Nursing, rehab to recuperate from surgery and learn to take care of my stoma, and sore of skin above rectum. I had not been on Levaquin for my twice yearly bronchitis for 4 months prior to hospitalization for colonectomy, where half of my colon had been removed due to obstruction between transverse and descending colon. I have a permanent ostomy.
It wasn’t until after two hospital trips and two months in rehab that I was released to home. Cdiff was not tested for again until four months after surgery,
in November, 2013. I started with abdominal pain, watery Diarrhea,nausea, lack of hunger, bloating. Fever. I was then tested for cdiff. For many months, test showed positive for PCR. The last year, my ToxinAB has been tested and it has been positive every time. Every month accept two, two week periods during this entire time going forward for years. I was prescribed Vancomycin 250 mg on a 5 week taper every month since November 2013.
It is my contention that I either got cdiff in the emergency room of this same hospital on numerous occasions for “Diverticulitis, gastritis, dehydration due to severe diarrhea, etc. All gut related ER visits. When I started investigating cdiff and what it was, on my own, after being well enough to do so, that I realized I had gotten this bug in that hospital, either in ER or during my surgery. Until November, 2013, I has constipation NOT diarrhea problems. I wrote NIH, CDC and my California Department of Infectious Diseases, asking them to investigate this medical center, for I found out by CDC, that in 2013, this medical center had reported 78 cases of cdiff that year!! I was part of that 78. It appeared to me that 78 cases couldn’t have all come in with cdiff already in their gut. And already being concerned with the medical centers lack of sanitary procedures in ER and in-house, gave me more pause and reason to write the health organizations here to for mentioned. To my dismay, all three said ” prove it…that you got the cdiff at the medical center”. and all refused to investigate this medical center for violations of CDC regulations for sanitation and patient care as regards infectious diseases. I saw personally, as a patient, and having my deceased husband and father in this medical center for years before my hospitalization in 2013. I now advocate on Inspire, a web site for Ostomy patients, by trying to educate and give web site information to other ostomstes and iliostomate patients who also had or still have cdiff from hospital visits…thinking they already had it, never thinking, in most instances, that they got it during surgery or in numerous ER visits before various surgeries of abdominal area and gut.
I had been the Medicare/ Medi-Cal Hospital Stay Certification agent, and Credit Manager at a small hospital for 3 years in the late 70’s and 80’s. I had worked as a lay person working in hospital settings since Stanford, now UCSF, off and on since 1964. I was keenly aware of CDC regulations as they revised over the years in and out of my hospital work. I knew I did not get the cdiff before 2013. I had never had a diarrhea diagnosed problem prior to that hospitalization in 2013.
I attempted to inquire to 15 attorneys to handle my case to force the investigation of the lack of CDC compliance and my malpractice by the surgeon. All to a fault said I had a case on many levels, but that they didn’t handle that kind of a case. Finally, after continuing to find an attorney, or trying to get CDC to look into this medical center, my 3 years for litigation had expired. So, as sick, isolated as I make myself, and advising other cdiff sufferers to contact the HHS in Washington to alert them to this most serious killer, I find I am helpless to have corrective surgery and removal of my remaining colon to get rid of the cdiff. Further, in investigating FMT, the gastroenterologists in my area that are doing the procedure will not take me as a patient for this life saving procedure unless I pay the entire patient portion prior to treatment and insurance. I have Medicare and a secondary insurance through survivor benefits from my husband’s employer, Prudential insurance as he was an agent then manager for years.
Right now, after just finishing a 5 week taper of Vancomycin, I am symptomatic again. Each time I reoccur with cdiff I am sicker, with each episode and corresponding treatment with Vancomycin. I have lost teeth, have broken other teeth due to the malnutrition of the disease, and constant antibiotic use. I have lost a lot of hair, nail consistency, and live with a foggy memory continuously.
Little side note. Due to strict adherence to CDC regulations, and daily use of ion machine in isolation rooms, the Nursing/ Rehab hospital I was in for 2 months, and my father for 8 years before his death, have a Five Star Rating from the County Health Regulatory Agency as one of the healtiest.