At the click of a mouse, patients with colon and rectal disease can find answers to questions and sources of support. In addition to information on the ASCRS website, ASCRS recommends these links for further information about colon and rectal disease. Some are very well known and hardly need an introduction.
Patients Dealing with an Ostomy
Patients dealing with an ostomy will find information provided at the American College of Surgeons’ site, Ostomy Home Skills Program for Patients, very useful. ASCRS leaders contributed to development of this information. The United Ostomy Associations of America, Inc. site is also recommended.
Patient Advocacy and Support
Several of these links connect with organizations known for patient advocacy and support, including the American Cancer Society, Crohn’s and Colitis Foundation, Colon Cancer Alliance, Fight Colorectal Cancer, Prevent Cancer Foundation, and Susan Cohan Colon Cancer Foundation.
Additional information is available through the two links connected to federal government agencies — National Cancer Institute and National Institutes of Health. This message from the ASCRS Public Relations Committee provides patients with details related to how a colon and rectal surgeon can provide expert diagnosis and treatment care.
The American Cancer Society (ACS), founded in 1913, is a nationwide, community-based voluntary health organization dedicated to eliminating cancer as a major health problem. Together with our millions of supporters, the American Cancer Society (ACS) saves lives by helping people stay well and get well, by finding cures, and by fighting back. Headquartered in Atlanta, Georgia, the ACS has regional and local offices throughout the country that support 11 geographical Divisions and ensure we have a presence in every community.
American College of Surgeons: Ostomy Home Skills Program for Patients
The ACS Ostomy Home Skills Kit supports patients with educational and simulation materials to learn and practice the skills needed for optimal postoperative recovery. The kit supports the entire surgical team with quality, comprehensive education. It was developed by the ACS in collaboration with ASCRS, American Urological Association (AUA), Certified Enterostomal Nurses (CETN) and the United Ostomy Associations of America (UOAA).
The skills kit contains:
- A booklet with information on the operation, home skills such as emptying and changing a pouch, problem solving, and home management.
- A DVD with demonstration of each skill
- Stoma Practice Model
- Stoma supplies (measurement guide, marking pen, scissors, sample pouch)
- Ostomy self-care checklist
The Crohn’s and Colitis Foundation of America, founded in 1967 and based in New York City, is a non-profit, volunteer-driven organization dedicated to finding the cures for Crohn’s disease and ulcerative colitis, and improving the quality of life of children and adults affected by these diseases. Crohn's and Colitis funds research, sponsors educational workshops, and publishes a scientific journal, Inflammatory Bowel Diseases.
One of the best ways to help manage your Crohn’s disease is to learn more about it. The fact is, Crohn’s is an inflammatory bowel disease (IBD) that is associated with inflammation of the lining of your digestive tract, which can lead to flare-ups.
For more than half a million American men and women who have been diagnosed with Crohn’s, inflammation is at the root of their Crohn's disease symptoms. While the exact cause of Crohn’s remains unknown, researchers now believe that a combination of genetics, environmental factors, and an abnormal immune response may result in damaging inflammation of the digestive tract.
The mission of the Colon Cancer Alliance (CCA), based in Washington, DC, is to knock colon cancer out of the top three cancer killers by championing prevention, funding cutting-edge research, and providing the highest quality patient support services. ASCRS partners with CCA in sponsoring UNDY Run/Walk events in communities across the U.S.
Their signature Get Your Rear in Gear® races put us in the unique position of being able to fund this goal at the community level and invest in programs that will drive home the importance of screening. The survival rate for colon cancer is 90% when it is caught in the early localized stages. Unfortunately only 40% of cases are being diagnosed in this window.
Most importantly, GET EDUCATED and GET SCREENED.
Fight Colorectal Cancer was founded in 2005 and is based in Alexandria, VA. It envisions victory over colorectal cancer; demands a cure for colon and rectal cancer; educates and supports patients; and pushes for changes in policy that will increase and improve research and empower survivors and those touched by colorectal cancer.
Today, Fight Colorectal Cancer is the leading patient advocacy group in colorectal cancer and an active participant in cancer research and advocacy on the Hill. It has grown to become an organization known for colorectal cancer awareness, advocacy, patient education and research programs.
Since 2005, they have trained and equipped hundreds of grassroots advocates to understand the disease and get involved in politics and research to make patients' lives better.
If you’ve been touched by colorectal cancer, they invite you to join the fight and become an advocate today.
Friends of Ostomates Worldwide-USA
The mission of Friends of Ostomates Worldwide-USA (FOW-USA), a volunteer-run, non-profit organization, is to provide ostomy supplies and educational resources at no cost to ostomates in need around the world.
The International Ostomy Association (IOA), an association of Regional Ostomy Associations, is committed to the improvement of the quality of life of Ostomates and those with related surgeries, worldwide. It provides to its member associations, information and management guidelines, helps to form new to my associations, and advocates on all related matters and policies.
The work of the Association, managed by ostomates, will be organized by a Coordination Committee, consisting of representatives of each of its affiliated Regions. According to the Charter of Ostomates' Rights, the Association encourages the highest possible standards of surgery, medical attention and patient after-care for ostomates, and, the use by medical professionals of trained ostomate volunteers as a member of the multi-disciplinary team organized to help rehabilitate ostomates. It motivates ostomates around the world to be engaged in forming and running Ostomy Associations.
Jay Monahan Center for Gastrointestinal Health
A clinical center of the NewYork-Presbyterian Hospital and the Weill Medical College of Cornell University, the Jay Monahan Center for Gastrointestinal Health focuses on prevention, screening, treatment, support, research, and education for individuals who have or are at risk for developing gastrointestinal cancers. The Center is named in honor of Jay Monahan – the late husband of Katie Couric.
The National Cancer Institute (NCI), established under the National Cancer Institute Act of 1937, is the federal government’s principal agency for cancer research and training. The National Cancer Act of 1971 broadened the scope and responsibilities of the NCI and created the National Cancer Program.
The National Cancer Institute coordinates the National Cancer Program, which conducts and supports research, training, health information dissemination, and other programs with respect to the cause, diagnosis, prevention, and treatment of cancer, rehabilitation from cancer, and the continuing care of cancer patients and the families of cancer patients.
The National Institutes of Health is the medical research agency of the United States and a part of the U.S. Department of Health and Human Services. It is the nation’s medical research agency — making important discoveries that improve health and save lives.
Thanks in large part to NIH-funded medical research, Americans today are living longer and healthier. Life expectancy in the United States has jumped from 47 years in 1900 to 78 years as reported in 2009, and disability in people over age 65 has dropped dramatically in the past 3 decades. In recent years, nationwide rates of new diagnoses and deaths from all cancers combined have fallen significantly.
The Prevent Cancer Foundation, founded in 1985, is the only U.S. non-profit organization solely devoted to cancer prevention and early detection. Based in Alexandria, VA, it supports the prevention and early detection of cancer through research, education, advocacy and community outreach.
Since 1985, the Prevent Cancer Foundation, a 501(c)3 nonprofit, has invested $138 million in support of cancer prevention research, education, advocacy and outreach programs nationwide and has played a pivotal role in developing a body of knowledge that is the basis for important prevention and early detection strategies.
The Foundation is the only U.S. nonprofit organization solely devoted to cancer prevention and early detection. They have funded nearly 450 scientists at over 150 leading medical institutions across the country. The Foundation's public education programs have applied this scientific knowledge to inform the public about ways they can reduce their cancer risks.
Susan Cohan Colon Cancer Foundation, founded in 2004 in Baltimore, MD, is an international leader in colon cancer prevention, support, and treatment. Its programs include research for a vaccine to treat colorectal cancer and an Interactive Resource Center featuring a comprehensive database relating to every aspect of colorectal cancer.
The Colon Cancer Foundation (Susie’s Cause) began with one woman’s extraordinary fight against colon cancer, and in less than a decade has established itself as the national voice of colon cancer.
Susan found it unacceptable that an estimated 150,000 people are diagnosed with colon cancer and almost 50,000 men and women die from the disease each year. For cancers affecting both men and women, colon cancer is the second leading cause of cancer-related death. Tragically, 50% of cases could be prevented by simple lifestyle changes and 95% of cases cured if detected early. Susan knew she had to do something. Together with her father, David Rodman Cohan, she founded the Colon Cancer Foundation.
United Ostomy Associations of America, Inc. (UOAA) is a national nonprofit that promotes quality of life for people with ostomies and continent diversions through information, support, advocacy and collaboration. UOAA has 280+ Affiliated Support Groups in the United States which are organized for the benefit of people who have or will have intestinal or urinary diversions, and their caregivers. UOAA's website provides a wealth of information for patients including medically reviewed ileostomy, colostomy and IPAA patient guides and a trusted nutrition guide and emergency blockage card. You'll also find resources in Spanish, inspiring patient stories, peer support resources, info on short bowel syndrome, and pages on life with an ostomy and IBD. Medical professionals may also benefit from UOAA's Nurses/Home Health Resources Page, and a Sexuality Guide to help you address the topic with patients, emotional health resources, and unique medical illustrations and info on pregnancy with an ostomy/J-Pouch. Please see the Ostomy and Continent Diversion Patient Bill of Rights endorsed by ASCRS and review the validated standards of care that should be utilized for all patients. Download an educational UOAA trifold here.
The WCET® Mission is to lead the global advancement of specialised professional nursing care for people with ostomy, wound or continence needs. Stoma, wound and continence care practices are constantly evolving. Hence the WCET® strives to provide the very latest information to its members.The World Council of Enterostomal Therapists® (WCET®) was inaugurated three decades ago in response to advances in nursing, medicine and surgery. This ultimately led to the creation of a new nursing specialty called Enterostomal Therapy Nursing (ETN). This specialty has evolved over the past 30 years to become a major component in the management of ostomy, wound and continence care.
As Enterostomal Therapy nurses, we look after people with ostomy, wound or continence needs, regardless of their age. Since illness is no respecter of persons, our patients come from all walks of life.
Thanks to the care and professional advice of Enterostomal Therapy Nurses, and modern pouching systems, an ostomy should not prohibit a person to survive illness and go on to lead a full and normal life.
The Wound, Ostomy, and Continence Nurses Society™ (WOCN®) is a professional community dedicated to advancing the practice and delivery of expert healthcare to individuals with wound, ostomy, and continence care needs.
We support our members’ practice through advocacy, education, and research.
Founded in 1968, the Wound, Ostomy, and Continence Nurses Society™ (WOCN®) is the largest and most recognized professional nursing community dedicated to advancing the practice and delivery of expert healthcare to individuals with wound, ostomy, and continence care needs. Through relevant education, effective advocacy, cutting-edge science, a supportive network, and a patient-centric approach, WOCN is dedicated to enabling professional growth for 5,000+ members and improving patient outcomes.