Remembering All C. diff. Survivors With Warm Thoughts and Gratitude In The New Year

2014 is coming to a close and 2015 is just a few hours away.CDIFF2015wordss


As the New Year approaches, our thoughts turn gratefully to those who have helped us in our progress and the progress of our communities.  It is in this spirit we say, simply and sincerely,  thank you.



Thank you for everything big and small you do to help make the C Diff Foundation a better resource in the lives of others, providing support, and for joining us in raising C. diff. awareness to the millions of families, healthcare providers, communities, and friends worldwide.

We are a giving Foundation and a lot of that giving is facilitated through each of you.  Giving makes a difference and there are so many different ways to give.  Whether it is through presentations at a conference,  sharing your journey with others, joining the Foundation’s volunteer program, or donating time in November for the “Raising C Diff Awareness” campaign in communities across the globe the partnered efforts and contributions are greatly appreciated. Through the many facets of giving and charitable support, the Foundation’s mission continues to move forward in educating, and advocating for C. diff. prevention, treatments, and environmental safety worldwide.

From all of us to all of you and your families,  we send our best wishes for a peaceful, happier, healthier, and successful 2015!

Thank you and Happy New Year.

C. difficile Infection; CDI is More than a Hospital Related Cost

In 2008 I was diagnosed with a C. difficile infection,also known as C. diff
(Clostridium difficile).  First course of treatment was  metronidazole
and continued on that path of the toss between metronidazole and Vanco for almost a year.
The PCP referred my care over to a local GI group consisting of fourteen Physicians.
During the course of eight months, I had been hospitalized numerous times, had two endoscopies and colonoscopies, weekly visits to the ED where I was treated for severe abdominal pain and dehydration. During the course of eight months, I was assessed by each of the 14 GI physicians, prescribed different medications to treat the ongoing recurrent (nine) CDI’s and excruciating symptoms associated with it. By November, 2008 I had been turnover and referred to Hospice. I had received  last rites by our Parish Priest, however; through the determination of family members the requests for a second opinion referral was made to the hospital, and the  insurance granted the referral moving me away from the immediate area of care.After a wait of four months — the referral moved the care over to a major university medical center,300 miles east of my primary residency. One GI physician assessed the physical symptoms,
conducted a third endoscopy and colonoscopy and proceeded to treat the CDI with
yet another Antibiotic for 10 days. Two weeks after the completion of the antibiotic, another
stool sample was tested for C. difficile toxins A and B, with negative results.
There were noted decreased G.I.symptoms and a recovery was in sight-  finally.
In 2009, November, nineteen  months after being diagnosed
with the first CDI, solid foods were then  being slowly reintroduced as a
clear liquid diet had been prescribed and the only diet tolerated over 18 months.
During that time during poor nutrition and hydration additional diagnosis of malnutrition,
alopecia, muscle atrophy related to wasting, low hemoglobin, low hematocrit,
vitamin D  deficiency developed while a daily caloric intake of less than 300 calories continued.
After two years of working with four Registered Dietitians at the medical center daily caloric intake
has increased with recovery of most of the new diagnosis which developed during the CDI.
During the active phase of the CDI and post CDI, the G.I. symptoms continued; CDI colitis resulted with
an overall weakened physical state.  In 2009, physical therapy was implemented
by the PCP for endurance and strengthening which continued three times a week for
four months. This intervention also delivered co-pays causing additional patient expenses.
From the first diagnosis in April of 2008, the financial burdens were well underway. The inability
to work during the active phase of CDI, PTO time as sick time, FMLA was
implemented, which is unpaid time off. And then the leave time expired but the
symptoms of the CDI continued. I was left with no other choice than to resign
from my five year permanent employment on the TCU unit at the acute care facility,
an organization I truly enjoyed working with. In late 2009, my husband and I
relocated and expected nursing positions where the G.I.  physician treated
and cured the first CDI. We began orientation process, yet shortly after I began, I
was unable to maintain the pace as the daily G.I. symptoms continued resulting in
yet another resignation and major disappointment.
Co-pays needed to be met for continued treatment. Physicians and pharmaceutical
diagnostics, emergency room visits, so between 2008 and 2010, it resulted in utilizing savings, retirement funds,
investment funds, IRAs, and everything that we had saved to carry on and cover the
salary lost due to this  infection  a  CDI. the bills did not stop but my
ability to work did. The CDI resulted to more than a physical impairment
In 2011, back to  working world.
It took two years to recover from the 2008 diagnosis of a C. difficile infection.  Now I was feeling stronger, I thought no problem, I can do this even living with the CDI colitis,  which only occurs after eating or drinking.  Employment was well underway with working 12 hour shifts as long as I remained NPO.  After three months time of employment, the G.I. symptoms began changing and symptoms were increasing. There was an increase in abdominal pain, diarrhea, regardless of PO intake or not. There was  malaise, fatigue, severe back pain, and the new PCP, assessed, with knowledge of the history
immediately ordered a stool specimen (PCR) for C. diff.
October 2011, PCR results, positive. Positive again for CDI. This was a bad joke!   Pharmaceutical
treatment, Vanco capsules 250 milligrams , with alterations in dosages and duration during
this antibiotic treatment. The course of treatment continued after each recurrence,
which was nine times – until a negative stool test was received a year later in October 2012 , then
followed up with a Movi-prep ,which is an ordered prep before colonoscopies.

The second CDI resulted with another resignation of employment.

The pharmaceutical co-pays were greater than or equal to $1000 each prescription.
There were co-pays for diagnostics, emergency room visits,  PCP’s and specialists.
Between 2011 October and November 20 12, out of pocket healthcare expenses were greater than $15,000.   There went the savings account once again.
Patients without pharmaceutical benefits pay the cash price this came of course from the local pharmacy of   $2704.99 for the Vancomycin capsule  250 milligrams three times daily for 14 days or  Fidaxomicin 200 milligrams twice daily  for 10 days with an out of pocket cash expense of $3370.49
The non-financial losses such as psycho-social changes known to be created from this
infection, as any long term illness and diagnosis, it  is the lack of productivity, not lack
of creativity, it is the inability to attend family functions, unable to participate in social
events, the role reversal from being a very independent individual, to becoming
totally dependent on others for housekeeping chores, all the way to financial assistance.  It’s the unexpected losses, the unplanned catastrophic events that devastate patients and families alike.  No one asks for an infection that doesn’t go away!  No one plans on loosing in life from an infection that can not remain  resolved by medication.
The phenomenal feelings of frustration and disappointments lead to the determination
to make lemonade out of lemons.
Here it is 2014 and the post-CDI colitis remains on a daily basis.
Life is forever changed for thousands of patients being treated for a CDI.
A C. difficile infection is more than just an infection.  It has a greater impact than just
the hospital related costs associated with it – lives are forever changed.
C diff. survivor


A loss and a journey through C. difficile infections

My mom was admitted to the hospital with dehydration and diarrhea in the beginning of December 2012..  She was quite weak and could not walk.  She was pumped up with fluids, but seemed to be getting worse and worse.  The hospital released her to a “rehabilitation facility” which was really a nursing home, to gain the strength in her legs.  She progressively got worse and was now vomiting.  She was sent back to the hospital and they did all kinds of tests, but found nothing.  Again they pumped her up with IV fluids and sent her back to the nursing home.  She was too sick to rehab and just liyed there for a week.  We had her sent back to the hospital.  Now they did an endoscopy and other tests.  We were told she had C diff.

I had never heard of C diff and no one explained to us all the precautions we all would have to take.

My mom was not isolated at first and we didn’t know any better.  She was sent, yet again, to the nursing home less than 24 hours after beginning Flagyl.  The nursing home did not put in place any precautionary measures for her having C diff. My mom got deathly sick and a terrible allergic reaction from the Flagyl, so the nursing home doctor stopped it.  We asked for the Vancomycin which the doctor refused to administer.  He wanted a “wait and see” approach.  She laid there for a few days and got sicker and sicker.  When I visited her the next day (Christmas Eve) she was not making sense,  and didn’t recognize me.  I called an ambulance,  and she was admitted one last time.  The doctors began the Vancomycin,  but it was too late.  She died a few days later.  She was transferred into ICU, and at 4 am I received a phone call from the hospital that she died….”her heart stopped”, they said.  She suffered terribly.

Throughout this whole ordeal, I had begun to have diarrhea too.  When I told my sister, she told me that it was my IBS acting up from my nerves, which made sense at the time.  I was diagnosed with  IBS at 19 years old.  On and off I (since my mother’s death) have been suffering with diarrhea and stomach issues.  I went to the doctors several times and had a sonogran, cat scan, and numerous blood tests done.  All tests came back fine.  My diarrhea at this point (March 2014) was pretty bad.  Then in July, my doctor sent me to an allergist, and the allergist told me to have a stool sample and test for parasites and food poisoning. I explained to him how my mom died and that we should test for c diff too.  Needless to say,  my test came back positive for C diff!

My mom had died a year and 7 months deforestation! I know I contracted the C diff from her! I was prescribed Flagyl.  I began to have strange symptoms about 6 days into it.  I had gotten a sore throat, and my right arm began to swell and turn a purple shade and felt hot and tingly, and I had the same hot and tingly feeling in my throat, mouth and tongue.  My tongue turned gray/black with a thick white coating and swelled.  After 12 days on the Flagyl, I stopped taking it.  At this point, I could not get applesauce down my throat, and felt extremely nauseous and too weak to walk.  So now it’s close to a month since treating the c diff, and I still have the “toxic” symptoms that I thought were caused by the Flagyl.

The symptoms are not as severe, but are still there.  I no longer have diarrhea,  but I still have gastro issues and have been at the doctor’s every week.  More blood and urine tests, and even a tongue scrapping to see if any fungus or bacteria.  I feel weak, shakey and foggy headed at times…mostly in the mornings.  My blood levels are all normal.  The nutritionist has me on Floristor probiotic and a low FODMAP diet.  This is not only frustrating, but very emotional,  as it brought back to me all what my mother endured before she died.  I’m still looking for answers as to why I feel the way I do, and the doctors have no answers as of yet.

Annie A

9 September 2014

C. diff. Survivors Alliance Network Officially Launched



The C. diff. Survivors Alliance Network, an affiliate of the C Diff Foundation,  is dedicated for providing healing support for individuals coping with both physical and mental pain, the complex treatments, psychosocial losses and alterations, and the excruciating grief with complex emotions that accompany the loss of a loved one.
We hope that you will find resources here to help you cope with, and eventually heal from, what may well be the worst pain experienced from an infection.