Clostridium difficile (C. diff.) Infection; A Patient’s Spouse Perspective Living Through a “C. Difficult” Nightmare

HandsTouchingSun“Through better or worse, richer or poorer, through sickness and health — we survived not one but two separate C. diff. infections”  stated Angelo Ortiz, a C. diff. Survivor.

*the patient’s name has been purposely omitted for privacy.

C. difficult is an excellent term used to partially describe
the experience living through a Clostridium difficile infection with a partner,
a soul-mate, or a significant other.

A way of regarding this situation objectively ; a point of view shared with fellow C. diff. survivors also walking this path with their loved ones.

Interviewer:  Angelo, did you know what a Clostridium difficile infection was, also known as C. diff. ?

Angelo:  Yes, being in Nursing I have cared for patients diagnosed with C. diff. infections.  However; I did not surmise that my wife was suffering from this infection.  Usually patient’s bowel movements will have a significant obnoxious odor that can alert healthcare providers to surmise a C. diff. infection.  This is not always the case anymore.  Over the past decade healthcare professionals have noticed changes in symptoms, treatments, and the overall microbiology aspects of this infection.  The lack of odor in patients diagnosed with a C. diff. infection is one of them.

Interviewer  Had your wife been on Antibiotics or in a hospital being treated for an infection prior to being diagnosed?

Angelo:  No, she was not ill, had not been on antibiotics and not been a patient in a hospital.  Nevertheless; working in a hospital and being in close proximity with patients being treated for this infection may have played a big role in her acquiring it.

Interviewer:  Did the healthcare environmental operations utilize a EPA Registered product with a
C. diff. kill claim?

Angelo:  In 2009 Clorox Commercial Solutions Ultra Clorox Germicidal Bleach ® was named the first and only product to obtain Federal EPA registration for killing C. diff. spores on hard, non porous surfaces when used as directed.  Before then there weren’t any products available addressing
C. difficile spores and C. diff. spore elimination through disinfecting.  Since that time, we have come a long way and the available products EPA Registered addressing C. diff. and also UV Disinfecting systems available to healthcare facilities fighting major healthcare-associated infections.

Interviewer:  What were the symptoms your spouse was experiencing on a daily basis?

Angelo:   Where do I begin?  There was pain, so much pain that it made my heart break.  I cried when she cried and screamed.  Talk about feeling helpless.  Watching my beautiful wife lay curled up in a fetal position in a hospital bed that we had to rent and place in the living room because she was too weak to climb the stairs in our townhouse.  It wasn’t pain she would tell me, it was her intestines twisting and turning and we could hear the whooshing and active bowel sounds.  They were so loud and audible we didn’t need our stethoscopes to access them.  If a half of a sandwich was ingested, it was eliminated within 45 minutes.  Maintaining hydration was a challenge every single day.  The docs had my wife following a clear liquid diet and with each office visit she would tell each doctor assessing her, “I can’t eat, everything I eat just runs right through me.”  They would tell her to not worry about it, stay on the liquids, eat what you can.  There wasn’t a lot of nausea or vomiting, no fever, but there were times where she would shiver and complain of feeling cold.  Falling into malnutrition and also mal-absorbtion also  caused G.I. system complications later on, too.

Interviewer:   What healthcare providers were visited and rendered care?

Angelo:   It took six months of weekly visits complaining of the G.I. symptoms and pain, to receive a concrete diagnosis by the Primary Care Physician.   After three months, after being diagnosed with a CDI and after the algorithm of treatments were not making a difference, the referral to be assessed by a Gastroenterologist came about.   During the next six months my wife was seen by all fourteen Gastroenterologist’s in the one practice without any significant improvements noted under their care.  After the six month of weekly visits and continued changes in medications, the physicians recommended a referral to Hospice.

Interviewer:   Where did the next level of care take you?

Angelo:   A Physician studying Clostridium difficile, suggested getting a second opinion by a Gastroenterologist at Duke University Hospital in N.C..   I met with the benefits coordinator at work who assisted in the process to obtain the approval for the second opinion.   Just to let everyone know, always call the customer service phone number on the back of the ID card and speak to the Case Manager working on the care in progress to learn of “how to” obtain a second opinion or visit the benefits coordinator at work to learn more about this option.  It is good information to know and if it weren’t for the one Physician suggesting this option to us I wouldn’t have a wife to talk about today.

Interviewer:   What was done differently at the new Physician’s office at Duke?

Angelo:   This visit bought my wife her fourth Colonoscopy and Endoscopy, however; we didn’t fight it.  If it was going to help the physician diagnose and treat this infection, we’re all in.   The results were on the positive side, no noted new changes or new diagnosis and another negative Celiac/biopsy was done via: endoscopy.  The Physician made a decision to utilize a medication being clinical studied for C. difficile that was already FDA approved for a different gastrointestinal diagnosis.  The cost of the medication was, as they would show on a menu, $$$$$.  We were extremely happy that this physician had the medication samples available.   Ten days of taking the medication prescribed there were noticeable changes taking place.  There was less bloating, less cramping, a lot less pain, the explosive – watery stools that were >15 x’s in a day were decreasing.  We had not witnessed any positive changes in almost a year.
This was a down right miracle in our book.

Interviewer:   You mentioned the medication expense.  Did you encounter other financial expenses during this infection?

Angelo:   Financial Expenses?   We drained our savings first after my wife was forced to resign from her job.  You can’t work in Nursing when you are tied to the bathroom, they don’t go together really in any job.  You just can’t work and shouldn’t work if you are being treated for an active CDI because it is a contagious infection.  That is why in the hospitals and healthcare facilities isolation precautions are implemented to help stop the spread of the infection.  So we go from being a two income family to a one income family over night.  Is anyone really prepared for that kind of a financial change over night?  The 401K was utilized to cover healthcare costs, prescriptions, co-pays, emergency room fees, specialists, travel, outpatient diagnostics, and the monthly hospital bed rental.  The mortgage was based on our income — joint, the vehicles were purchased separately, there weren’t many monthly recurring bills — it was all of the new bills being created by this illness.   Now we’re faced with the medical bills, and how do we pay for the living expenses all on one salary coming in?  You do what you have to do, we drained all of the retirement funds and the golden nest egg was scrambled.

Interviewer:   How long did it take your wife to get back on her feet and back to work?

Angelo:   It took her almost two years to feel strong enough to re-enter the work force.  From being ill so long and bed ridden from exhaustion, there was physical therapy, there was working with two Registered Dietitians from the hospital to retrain the gut after being on a clear liquid diet for over a year.  There were weekly visits to specialists who were monitor all the systems that were affected by the negative impact of this infection.  Hematologist, Gastroenterologist, Cardiologist, Endocrinologist, and P.T., and so much more.

Interviewer:   Do you have any message that you would like to share with others who are the  spouse/partner/significant other with another diagnosed with a C. diff. Infection?

Angelo:   Sure.   Don’t give up!  There were so many days that were darker than nights and we didn’t think there would ever be a light at the end of the tunnel.  It’s through our faith, our hope, and support of friends who weren’t afraid to visit us, along with reaching out to dedicated professionals and the Foundation’s that work with these professionals that care and know how to maneuver through the thorn bushes that brought us forward and through this nightmare.  We’ll always be dedicated and supportive to the C. diff. community and the C Diff Foundation and their members for their continued help.

 

We thank Angelo for his time and for sharing this journey through a C. diff. infection with a spouse, partner, soul-mate, or significant other.

 

To hear more about C. difficile infection prevention, treatments, clinical studies, environmental safety products and home care —  access  the C. diff. Spores and More Global Broadcasting Network Podcast library and listen to topic experts share educational information focused around C. diff. and other healthcare-associated infections.
please  click on the logo below *

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4-11-16 C Diff Foundation

C. difficile Infection (CDI) It’s One Day, One Hour, And One Step At A Time

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Health, defined by the condition of being sound in body, mind, or spirit; especially :  freedom from physical disease or pain.

It can’t be bought, is usually taken for granted, and not easily restored.

 

Being diagnosed with a Clostridium difficile infection (CDI) or better known as C. diff., wasn’t too terrible.  The directions were received from the doctor, medication was ordered and picked up at the pharmacy and recovery was right around the corner.   So we thought.

It’s not an infection  I want to talk about at the bowling alley with my friends, the family doesn’t understand it, not too sure the doc fully understood the road I was about to travel either.

The countless hours began sitting behind the computer searching, reading, freaking out at the copious amounts of negative words describing this bug.

So now I have a pile of information, a sick – sick stomach, bottles of meds, a few bills attached, the jumbo pack of T.P., and an on-line order of products that kill the spores that live in the fecal matter that cause the nightmare.

How in the world did I get this?  Antibiotics?  Out in the community?  While visiting a friend in the healthcare building?  Maybe at the local gym?  Off a contaminated surface somewhere?

The possibilities are many.

It took over three months and three different meds to break the cycle.

Not what they call infected anymore but you tell my G.I. system that.  Still living with the now and then symptoms and upsets.  Never sure when the 100 yard dash is going to take place and always careful about eating out at social functions.  Only four weeks post-C. diff. but I wanted to share a few words with everyone going through this.

Don’t give up and speak up because as the old saying goes the squeaky wheel gets the oil.  Thanks to the C diff Foundation for the information and support.  They understood the pain and suffering when others shunned me and walked away.

Steve C.,   Survivor

 

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 Roy P. Shares His Journey With Fellow Survivors

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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. Survivors Possess the Warmth and Light For Others

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Winter is in full force now, the colder, shorter days of January remind us of the warmth and light that so many individuals yearn for, but sadly cannot find.

Do you know of someone in need?  A spouse, child, parent, neighbor, or co-worker, who may be struggling right now with loneliness, doubt, fear, or fighting a C. diff. infection? Maybe they have lost their job, their home, their health, their family, a loved one………….

As a C. diff. survivor you possess the warmth and light that another so desperately needs.  You can turn winter’s drab branches into the bright blooms of spring.  How?

You can share your story and suggestions with them!  You can bring them light far brighter than any they can imagine – you are the light of hope for others.

By your participation in the C. diff. Survivors Alliance Network – you are a survivor’s light.  It is a gift that is given and received each and every day here at the C. diff. Survivors Alliance Network and C Diff Foundation.  It is countless inquiries, emails, phone calls, personal correspondence, visits from a CDF Volunteer and the support you share through your stories that give others the hope they so desperately need.

Here is an emotional note received from a fellow C. diff. Survivor:

Dear C Diff Foundation, Your letter and information you shared has re-ignited the sparks of hope within me which had long been dormant and cold, overwhelmed by grief, trauma, and losses. Too much sickness, too little happiness.  I had to take a deep breath to hold back the tears upon receiving the support you have all given me.  It was more than I had hoped for.

This is the kind of life saving impact that you have here at the C. diff. Survivors Alliance Network.

Please continue your participation on our site this year as a guiding light for others to see. We invite you to send your stories, suggestions, and healing words ………  a glimmer of light and hope from and for a fellow C. diff. survivor.

www.cdiffsurvivors.org

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.