Site History and Information

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Bobbie
Administrator
Posts: 12521
Joined: Sat Aug 06, 2005 8:00 pm

Site History and Information

Postby Bobbie » Sun Aug 06, 2006 11:28 pm

This information will help you navigate the site & find answers to your questions.

Welcome to the site!

SITE HISTORY

When his wife, Lori, developed C. difficle in l998, Sam Porter founded the C. diff. Support Site. He sold the rights to the site several years later. The current site owner's goal is to advance the diagnosis and treatment of C. difficiiile. Thanks to him, we have a professional webmaster and an updated web site. Membership is free. This is a support - not a medical - site. We can't give medical advice (please don't ask us to do so) but can tell you what worked for us.

Volunteers (non-medical) staff the site. We all had/have C. difficle and/or a family member with it. I (Bobbie) was the first moderator followed by Lauren and Allison. Lauren and Allison were with the site for years but left and are missed for their many contributions, especially Allison's sense of humor and an ability to explain "medicalese" and Lauren's dedication and hard work. Nancy was our fourth moderator and has done a great job for years. We've other gret moderators; some have left because of personal problems. Many of us will always remember CindyM. She was a frequent poster for years and helped many. She died of cancer of the esophagus last year - no relationship to C. diff.

Ours current moderators are (listed by seniority): Bobbie, Nancy, Roy, Beth (Liz), Pat (Fire), Carol, and, seekingcure, saraht, Jessica (code3rn), and pinkangel (Michelle).Because each moderator works only the hours she/he wants to work, many of us travel, have our own health issues and/or elderly parents with problems we can always use help. Researchgrandma and amyc are frequent posters.

AllisS is now our Chief Media Reporter and lists new publications regarding C. diff.

Currently, the site has 5063 users. (This number reflects those who posted within the last year.) On Tuesday, May 7, 2013, we had a record of 540 posters online. Many “guests” read the information but don’t join (the number is at the bottom of the screen - sometimes there are numerous guests. Other members stop posting and are no longer counted.

The site was updated with a new format in September 2011 and again in May 2014. Our web address is now http://www.cdiffdiscuss.org. We average 3 to 4 new posters per day (more in the winter months when there are frequent respiratory infections). Some have a long history of C. diff.

FORUMS: A GUIDE TO THE SITE

We use forums to categorize subjects. The first concerns posting on the site. The second is Dr. Tom Borody's articles on Clostridium Difficile Colitis (Dr. Borody is a prominent international C. diff. authority.)

The other forums have explanations as they are listed. The last forum is for moderators only so we can have "mini" meetings.

OTHER INFORMATION

Registering
To help track cases of C. diff., list your state or country (if other than the US) & your city if you wish. Do not list a web site to advertise a business; if you do so, it will be removed & your membership denied. If you have a problem registering, contact our web master at administrator@cdiffdiscuss.org.

Many people list an E-maiI address when they register. (It is visible only on the site to other members.) You can Email (or private message - PM) each other if you wish. Do not list personal information such as phone numbers and addresses on the site.

Posting
Read Rules of Posting. Most important, after your first two weeks as a poster, please limit your posts regarding personal problems/symptoms to one post a day. The post can contain multiple questions. You can post to support others as many times as you want.

Only moderators can post in CDI.

We are not medically qualified to do medical research for you and do not have the time to do so. For medical questions contact your doctor, your pharmacist, or research the topic on one of the medical sites (or other qualified sites) listed in this subtopic under MISCELLANEOUS INFORMATION or do a "Google search" on the subject you are researching.

We are trying to keep the site professional as doctors and researchers are viewing it. PLEASE confine intimate bathroom details to TMI. Yes, diarrhea is part of C. diff., but posts such as "Update: I had ....BM's today & they were yellow, green. ....." are unnecessarily graphic. For those of you who enjoy these intimate details, PM or Email each other or post them in TMI.

C. DIFFICLE OVERVIEW

The "difficle" in C. difficle means difficult in Latin -- so named because it is difficult to culture.

If medication is necessary, most (70%) of C. diff. sufferers recover with one to two rounds of Flagyl or Vancocin. There are many false negatives in C. diff. testing. The disease can reoccur or relapse. If you feel you still have C. diff., call your doctor. For the most accurate test results, you should be off Flagyl or Vancocin for 10 to 14 days (if possible). The PCR is a newer test with a 92-94% accuracy. If you have recurrent C. diff., consult a GI (gastroenterologist) or ID (infectious disease doctor). You have the right to choose (or change) doctors and to obtain copies of your medical records, including all tests.

Dr. Clifford MacDonald was the CDC epidemiologist in charge of tracking C. diff. and is still involved. To see articles he wrote about C. diff., contact the CDC at http://www.cdc.gov/hai/ and type his name in the search box.

Stress & C. difficle
Any chronic disease, including C. diff., causes anxiety and depression. We call it WWW: Watch, Wait, & Worry.

Diet
Diet is individual; consult your doctor. Many people can't tolerate dairy products (yogurt is an exception) because C. diff. (as well as other GI infections) can affect the ability to digest lactose. Avoid excess sugar. Some can’t tolerate fatty or spicy foods. Stay hydrated. Drink water, Gatorade, or Pedilyte. Avoid "sports" drinks that contain a lot of sugar. Mix Gatorade with water to reduce sugar, particularly if you have high blood pressure or diabetes. Try the supplemental drinks like Boast or Ensure to build strength and gain weight. They have many varieties now.

Exercise
It won't cure C. diff. but it is helpful physically and emotionally. Do what you can - even a walk around your apartment/house will help build your strength. Start small and work up - baby steps. It will also give you something to do besides worry.

Probiotics & Cholestyramine
Space probiotics as far apart from the Vancocin or Flagyl as possible. If you take Cholestyramine (Questran), space it as far from Vancocin or Flagyl (and probiotics) as possible because it will bind other medications.

Hygiene Tips
Wash your hands often and thoroughly. Washing with soap and water is the most effective preventative. Alcohol wipes and gels are effective against viruses but can remove some bacteria if you rub your hands briskly. Insist your health care providers wash their hands. Disinfect surfaces (especially in bathrooms) with a bleach/water mixture (l part bleach to 9 parts water). Don’t forget door knobs!

Antibiotics
Try to avoid antibiotics if possible. Having C. diff. once can increase your chances of having it again. Broad spectrum antibiotics are usually the worst offenders. Antibiotics have saved many lives but do not “cure” viruses. Many physicians are now restricting their use because overuse has caused bacterial resistance. If you take an antibiotic, be sure it is necessary. Cultures can diagnose strep throat, urinary tract infections, and some other infections.

Other Risk Factors
Although antibiotics are involved in many cases, people can also acquire it in places where they are in close proximity such as hospitals, nursing homes, and day care centers. Sometimes there is no known cause. Very young and ill, elderly people are the most susceptible, but there has been a recent increase in “atypical” cases involving young, otherwise healthy people. Several studies indicate a possible link with acid-reducing medications.

MISCELLANEOUS INFORMATION

Check medications and their interactions with your pharmacist. (All medications have side effects.) Some good medical sites are http://www.webmed.com, http://www.mayoclinic.com and http://www.medscape.com. Wikipedia (free online encyclopedia) has easy-to-understand information on medical terms, medications, and treatments http://www.wikipedia.org. (It is not always accurate but a good place to begin.) You can “Google” any topic. Don’t diagnose yourself on the Internet; use it as an informational tool.

You'll receive the best medical treatment if you are prepared, professional, pleasant, and persistent. You are your own and/or your family member’s best advocate. Be pro-active. Report your C. diff. to the CDC at http://www.cdc.gov/hai/ and educate others. After years of anonymity, C. diff. is gaining recognition although many have still not heard of it, and some in the medical community continue to downplay it. We can change this!

C. diff. is finally geting some attention due to the increasing number of cases. A promising new medication (Dificid) is now available, there are alternative methods of treatments (including FMT's which have a high cure rate of 92 to 94%), and several other treatments (including a vaccine) are in “the pipeline.”

As much as we would like to help those in financial need (we all know how expensive the meds. & hospitalizations are) we can't use the site to raise funds for members. We don't have the proper authorization and could get the site closed down. There are C. diff. support sites that will aid you in obtaining a FMT. See The Fecal Transplant Foundation in Links at the top of the home page or google for email address.

There is information on financial assistance for C. diff. medications in CDI and also on less expensive vancomycin on the home page of the site and in CDI.

We appreciate the "thanks" we receive. After you recover, please continue to post to let us how you are doing and to support others.

Thank you for your participation.

The C. Difficile Support Group/Foundation (edited 02-10-15)
Last edited by Bobbie on Fri Mar 20, 2015 1:19 am, edited 74 times in total.
Reason: Update

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