Outstanding Article — Georgia Writer’s Battle With Deadly Superbug — Clostridium difficile

http://specials.myajc.com/fixing-to-die/

We do not usually share articles written focused on C. diffiicle infections, however; this piece is outstanding.

It tells a story of a man – acquiring C. difficile – a fight for his life.

How many of you can relate to this scenario?

YES — we know YOU CAN!

There will be parts of this article that will pull at your own heart strings, your memories will swing back through the closed door of this painful time in your life, and this man on the mend will one day stand shoulder to shoulder with the many of us — a C. diff. Survivor.

We send out our sincere get-well wishes to this patient recovering from all he has endured (C. difficile, Sepsis + more) and let us all keep him and all of us in our thoughts with good wishes and support.

 

C diff Survivors Alliance Network

 

C diff Infection; I Don’t Want To Feel This Way Anymore

No one understands the pain, the symptoms related to a C.difficile infection (CDI). The symptoms that cause isolation — either because others are afraid to visit or because you’re tied to the restroom or because the body is exhausted from depletion and the constant fluid shift. No, not many truly understand the pain that a body endures during the treatment for a C difficile infection and the healing process —- YOU are not alone and we do understand. For C.difficile infection information and support call the C Diff Foundation’s hot-line and speak with a information specialist today
1-844-FOR-CDIF (1-844-367-2343)

CdiffDontwantto

Warm Holiday Greetings From the C diff Survivors Alliance Network

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The holiday season is upon us; A time to share warm holiday greetings while reflecting upon the many individuals combating a C. difficile infection.

We especially call to mind those who have passed away from a Clostridium difficile infection and/or
C. difficile involvement while fighting other diagnoses simultaneously.

 

 

The all-encompassing nature of chronic illness and its disruption of life and plans can elicit a wide range of emotions. These responses include: stress, grief, anger,fear,depression, and anxiety.  Be kind to yourself.  Take time for you during the holiday season.

Try experimenting with different ways of managing stress and painful emotions. When you find a technique that works, try to incorporate it into your daily or weekly routine. Some ideas include exercising, walking, yoga, listening to music, deep breathing exercise, meditation, cooking, reading, writing in a journal, and spending quality time with family and friends.

We would like to take this opportunity to say that during the year it has been truly appreciated to stand along-side the many patient focused and educational organizations, healthcare professionals, and scientists researching and developing new preventative measures, and treatments to combat C. diff. infections along with the long list of  “superbugs.”

Through continued education and advocating for C. diff. infections and Healthcare-Associated Infections (HAI’s) positive effects are taking place in raising awareness  in prevention, treatments, and environmental safety worldwide.

In 2016 we look forward to releasing newly developed tools for patients, “C. diff. Survivors,” families, healthcare professionals. and residents in every community while  working toward a shared goal in witnessing a reduction of newly diagnosed  C. diff. and Healthcare-Associated Infection (HAI’s) infections.

None of us can do this alone…..all of us can do this together.

Thank you for your continued support and from all of us at the C Diff Foundation, and we wish you and your family warm holiday greetings.

C Diff Foundation Opens a New Avenue – C. diff. Nationwide Community Support Program

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The C Diff Foundation introduces the                                                                 C. diff. Nationwide Community Support (CDNCS) program beginning in November for patients, families, survivors and for anyone seeking information and support.

C. difficile (C. diff.) infections caused almost half a million infections among patients in the United States in a single year, according to a 2015 study by the Centers for Disease Control and Prevention (CDC).

In addition, an estimated 15,000 deaths are directly attributable to C. difficile infections, making them a substantial cause of infectious disease death in the United States. (See note below [i].)

As of 2015, there is an absence of professional C. diff. (CDI) support groups in America. The                         C Diff Foundation has pioneered a collaborative plan and developed support groups in a variety of availability and locations to meet the needs of individuals seeking C. diff. information and support.

“We found it to be of the utmost importance to implement this new pathway for support and healing after speaking with numerous patients, family members, and fellow-C. diff. survivors,”

The C Diff Foundation now speak for the thousands of patients within the United States who, each year, are diagnosed with a C. diff. infection. This growth, in part, reflects the value C. diff. support groups will provide, not only to patients, their spouses, and families who are living with and recovering from a C. diff. infection, but also to the countless number of individuals who will become more aware of a C. diff. infection, the importance of early detection, appropriate treatments, and environmental safety protocols. There will also be Bereavement support group sessions for  C. diff. survivors mourning the loss of loved ones following their death from C. diff. infection involvement.

Beginning November 2015 the CDNCS groups will be available to all individuals via: Teleconferencing with some groups advancing and adding computer application programs in 2016. CDNCS groups will provide support and information  to 15 participants in each session.

The CDNCS program sessions will be hosted via: Teleconferencing with leaders and fellow C. diff. survivors  from Maryland, Florida, Missouri, Colorado, Ohio, and Oregon.

The Colorado CDNCS group is offered at a public venue and will be hosted in Arvada, Colo. every third Thursday of each month, beginning November 19th. The Meeting will start at 5:30 p.m. and end at 7 p.m lead by a C Diff Foundation Volunteer Advocate and C. diff. survivor  Mr. Roy Poole.

To participate in any CDNCS group being offered during each month, all interested participants will be asked to register through the Nationwide Hot-Line (1-844-FOR-CDIF) or through the  website http://cdifffoundation.org/ where registered individuals will receive a reply e-mail containing support group access information.

  • The Support Registration Page  will be available on November 1st.

The C. diff. Nationwide Community Support group leaders will provide a menu of topics being shared each month on the C Diff Foundation’s website ranging from Financial Crisis Relief, Bereavement, Nutrition, Mental Health, to C. diff. infection updates and everyday life during and after being treated for a prolonged illness. Both Community based sessions and Teleconference sessions will host healthcare profession topic experts

There is evidence that people who attend support group meetings have a better understanding of the illness and their treatment choices. They also tend to experience less anxiety, develop a more positive outlook, and a better ability to cope and adapt to life during and after the treatment for C. diff.

There is a Purpose:

A diagnosis of a C. diff. infection is unexpected and almost always traumatic. As a result, it is not uncommon for newly diagnosed patients to experience a wide range of emotions including, confusion, bewilderment, anger, fear, panic, and denial. Many people find that just having an opportunity to talk with another person, who has experienced the same situation, to help alleviate some of the anxiety and distress they commonly experience.

Individuals also find that they benefit not only from the support they receive, but also from the sense of well-being they gain from helping others. It has been said “support is not something you do for others but rather something you do with others.”

“None of us can do this alone – all of us can do this together.”

Follow the C Diff Foundation on Twitter @cdiffFoundation #cdiff2015 and                                        Facebook https://www.facebook.com/CdiffFoundationRadio.

Note/citation: [i] http://www.cdc.gov/drugresistance/biggest_threats.html

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.

Surviving C. diff. Infections (CDI) – Knocked Down But Not Out

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A C. diff. Infection may have knocked us down – but not out; Left us crying but still breathing, Broken us but made us braver than before.

We’re still strong enough to survive this and we will!