A C. diff. Survivor’s Journey Shared with the C. diff. Survivors Alliance Network

CdiffSurcicorsLOGO2015A C. diff. Survivor’s story…………

 

My story goes back to 2012-2013, where I was battling chronic urinary tract infections, the reason is still unknown. In late 2013 I had at least one every month, and every infection I had, antibiotics were prescribed. In November/December of 2013, I just felt on the verge of being sick quite often. I never knew what it was. In late December I consulted with a urologist for the first time. She suspected that the lining of my bladder never had a real chance to heal, thus causing recurrent infections. She prescribed a broad-spectrum antibiotic, and she wanted me to take it daily for three months to give my bladder a chance to heal. I had been on it for about a week when I started to feel like I was getting the flu. I kept feeling worse and worse, but I thought that the best remedy for “the flu” was rest and time. I was having a lot of diarrhea and nausea. The nausea was the worst part of it. After almost four days of this, I called my doctor and his nurse assessed me for dehydration. I hadn’t urinated in about 15 hours but all the while I’m having horrible diarrhea and I wasn’t drinking anything because I was too nauseous. She told me to go to the ER immediately and if I couldn’t get a ride, call 911. I was also getting kind of delirious and confused at this point, presumably from severe dehydration. I get to the ER, after about 12 hours of seeing how IV rehydration was going to go, they decided to admit me. I was in renal failure, but I didn’t know that until I was discharged. They suspected C.Diff, but weren’t sure yet. I had never even heard of it. I still wish I never had occasion to hear about it. They took stool samples and sure enough, I tested positive. They started me on a course of Flagyl. I was released five days later. But since I didn’t have a steady course of Zofran flowing through my veins at home, the nausea became unbearable. I probably would have killed myself if I would have had the energy. I didn’t eat for eight days and lost 30 pounds in fifteen days. I have never been that sick in my life. The Flagyl seemed to have cleared the infection, but I still felt like crap for a month.

Two months later, I begin to feel horribly sick again, and I knew I had it again. The telltale diarrhea and nausea was back. Sure enough, I tested positive again. I was started on an even more aggressive course of Flagyl. During these months, giving stool samples and talking about my bodily functions to just about anyone who would listen became the norm. I lost all my dignity for sure. I then started to lose a lot of hair. My doctor said that can happen when the immune system is under an enormous amount of stress. It was five months before I felt normal again. All of this really hurt my mental health as well. I actually have PTSD from these two experiences. I have panic attacks when I need to go on antibiotics for any reason. I take a probiotic daily. I also question doctors everytime antibiotics are suggested. I truly believe they are overprescribed in our society. I still can’t wear the clothes I wore when I was sick.

This illness, if you’ve never had it…think of the worst diarrhea you’ve ever had, and there is still no comparison. You might as well just stay on the toilet holding a trash can. But the weird thing is is that the nausea was the most distressing part of it. I feel anxious right now just talking about this experience.

 

Mary M.

C diff Survivor Sharon Shares Her Journey With Fellow Survivors

CdiffSurcicorsLOGO2015My story all started with an emergency room visit for a blockage in my common bile duct in October 2014. Things catapulted into a nightmare that is still continuing today. I had an ERCP to place a stent into my bile duct at Stanford. I developed Sepsis, Pancreatitus and I went into full organ failure as a result. I was in ICU for 48 hours.

A week later I had my gallbladder removed with a full surgical cut. I then developed pneumonia. My hospital stay was almost 2 weeks. I went home completely unconditioned and very weak. I spent the next two months healing. In mid December I had my incision burst open from an abdominal wall abscess. I had to have the incision opened up all the way to  the abdominal wall and it had to heal all over again. For all these ailments I was treated with a slew of antibiotics via IV and tablets. I did not know I was being dosed into hell.  Near the end of December I went back to Stanford for them to remove my  stent via an ERCP procedure. This makes me so angry and upset when I think about it. About 8 days later I started having stomach pain and unstoppable diarrhea.

My GI Doc did a stool sample and blood work and gave me the diagnosis that I had contracted C.diff. I did not realize just how serious this can be. He prescribed Flagyl and I took it religiously and followed all doctor’s orders on taking the exact probiotic etc. I finished the Flagyl and four days later the diarrhea started all over again. I was going 20 times a day. I called him right away and he put me on Flagyl again. This time for a longer period. I finished that course and again I was clear for about 5 days when the severe diarrhea took hold. I was again going about 25 times in a day. I lost 7 pounds in 3 days. I got hold of him and he wanted me to do a Sigmoidoscopy. He prescribed Vancomycin and 2 doses took away the harsh symptoms. By the time I did the Sigmoidoscopy there was not a trace of C.diff. or any kind of colitis. So I diligently finished the vancomycin after 21 days. I was free for exactly 4 days when I started having gas and nausea. By the third day I was again in the bathroom 20 plus times but this time I was in excruciating pain.

He scheduled a colonoscopy but when he saw that my WBC were over 16 000 and my stool sample came back positive he cancelled it. I was in so much pain I actually took Norcor and I was ready to ask my hubby to take me to the hospital. Again with the diarrhea and the colonoscopy prep I lost 3 pounds in a day. He consulted with an infectious disease specialist and he has me on a long course of Vancomycin and it is stepping down the dosage every week until the end of April.

I then have to take another medicine that binds bile salts for a month. This has truly been a nightmare. It rules my life. I have good days and then I have bad days. I am struggling with nutrition because I still have an incision that is not fully healed 5 months after surgery.

I am supposed to be mindful of getting enough protein but the C.diffl takes away my appetite. I get very angry that this has happened because someone did not do their job properly and I was exposed to dirty endoscopic equipment. This has caused me so much misery and pain. I have missed so many things at my son’s school. I have to sometimes ask my hubby to rearrange everything at work so that he can go and pick up the kiddo. It ruins plans for outings and dinner dates as I never know if I will feel strong enough to go out.

This should never happen to anyone. The best was my GI doc canceling the colonoscopy and telling me I am highly contagious and it would be better to not expose anyone having a procedure after me. If only I had been given the same consideration. I am at such a low ebb with this struggle. I am already panicking about it coming back after I am done with this round of Vancomycin.

We will be leaving on a family trip two weeks after I finish this round of medication and I am scared it will come back while I am away from home. I have been having severe panic attacks and I cannot stop worrying about it. I am thankful that I found the C Diff Foundation  on Facebook and webpage.  It has been so helpful.

I have told my GI that next time I am ready to try the fecal transplant option. I just want this to be done. Five months of hell and 3 relapses  and I have lost 30 lb….the only good thing.

C diff Survivor Roy P. Shares His Journey With Fellow Survivors

CdiffSurcicorsLOGO2015

In January, the prostate biopsy required both Levaquin and Gentamycin.  One month later, a five-hour oral surgery required ten days of Clindamycin.  Four days after completing the Clindamycin, the C diff symptoms started.

Saw my PCP who prescribed Clarithromycin.  Within three days the diarrhea was worse.  Returned to the PCP, who said I should get to the ER and have lab tests and a CT scan.
One hour after my arrival in ER, I was admitted for C. diff.  I was severely dehydrated. Along with I-V fluids, I got an I-V of Flagyl.  For the next two days, I was connected to the I-V for fluids, but began to eat again, and be able to take the Flagyl in pill form (not an easy thing to do!)
Prior to this event, I had never been admitted to a hospital in my 63 years.  I did not know what C. diff was, nor had I ever heard of it.

On the fourth day, I was released from the hospital and understood I was still infectious.  I continued 12 more days of Flagyl.  Three and a half weeks after the symptoms began, I provided a sample to my PCP who had it tested and the results indicated C. diff toxins were negative.
Since then, I’ve learned more about C. diff and the support available.

I’ve been taking daily probiotics with 10 strains; eating mild foods to allow my colon to recover from the injuries; trying to stick to gluten-free to minimize the challenges to the colon while it heals; and taking inulin fiber to encourage microbe growth.

I sleep well at night, deal with “issues” for an hour or so in the morning, and live a pretty much normal life. I lost a lot of weight during the infection, and I’m swimming and water-walking in the fitness center pool to rebuild those skinny legs. A lot of friends have asked me what happened, and I tell them of the effects of antibiotics, especially when there are multiple applications.  Since most of them are in my same age group, I encourage them to be careful with antibiotics, and to look after their colon and the microbes through probiotics.

My journey’s not over, but I feel I received great medical care at the hospital, have incredible loving support from my wife, and know that there are many people who are there for me.

C. diff. Survivor; Kristin Evans

Kristin’s C. diff. Survivor Story:
I contracted c.diff. when I had my gallbladder taken out in July of 2012. I was experiencing a lot of abdominal pain and diarrhea but attributed it to my body adjusting without the organ I went to the ER around 21 times over a year and a half before I was finally diagnosed with C.diff.
After that began the real journey, after loosing over 100 pounds in a year which took me from a size 10 to a size double 0 my doctor decided the repeated rounds of Vancomycin were not fighting the infection he suggested a fecal transplant. I was very confident in this procedure as I had only heard amazing and positive things about it.
I had the transplant done and waited a month to be checked again as I was told to by my doctor. I went in and of course the transplant failed. I was then put on more vanco and told to stay on it for another month then they would check me again.
Another 2 weeks went by and I was emergency admitted to the local hospital because my body had begun to shut down and my organs were beginning to fail. I was on full isolation for 2 weeks until the declared me c.diff. free. I was told sent home with a new problem caused by the c.diff. though.
I now had enlarged lymph nodes and they would not go down so I had an oncologist look at them and told me I had a possibility of Hodgkins Lymphoma and was scheduled for a lymphectomy a month later. After surgery I was cleared from cancer but I had contracted c.diff. back because of the surgery.
I was then diagnosed with chronic c.diff. and told we would try another transplant to try and kill the infection that was slowly killing me again.
The second *fecal transplant was again a failure and I was put on vanco for another year before I told my doctor I was going to die if he didn’t help me.
I had survived almost 3 years fighting this battle and my body was physically and mentally drained. I was tired of fighting, so he made the decision to hospitalize me again to try and cure this once and for all. I was in for almost a week before I was declared once again C.diff. free.
It has now been less than a month since my release and I am learning to deal with my new medical problems caused by c.diff. including gastroenteritis, ulcerative colitis, severe chronic IBS and permanent bowel damage.
I have been to the ER a total of 46 times throughout my journey with c.diff. and am still continuing to get my body back to way it needs to be with my weight and my eating which has become difficult due to the bowel damage.
But i will not give up and i will survive and fight this if it ever returns i will not let c.diff. take my life. Thanks for reading my story guys.

C. difficile Survivor and Breast Cancer Survivor Journey

CDiffBreastCancer

Life is truly unpredictable! No one could have known and I certainly had no clue that this chapter in my life’s story would include you (C. diff).   As I celebrate six years of a miraculous healing of Stage III breast cancer, I also remember when.  I remember when, after my second round of chemo, my immune system was compromised and, within hours, crashed.  I remember being diagnosed with a life-threatening infection called C. diff. 

I remember being quarantined for almost 20 days and taking an arsenal of antibiotics, but to no avail.  I remember when hope was fading and an angel appeared at 2:30 a.m. in the doorway of my hospital room with a life-saving antidote.

I’ll call him Dr. M.  Within hours of drinking his miracle cocktail, my condition began to improve and soon thereafter, I was released to go home.  This experience was nothing short of a miracle!

 

I share more of my amazing journey in my new book, My Glorious Opposite: The Other Side of Breast Cancer @ http://www.gloriousopposite.com.

Celebrate Life!
Veronica Edmond

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

cdifffinancialburden
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