One of the questions we hear most often in the ostomy community is, “Where can I go to find information that I can trust to help me with ostomy care?” There are excellent resources available both online and in-person to help ostomates and caregivers with everything from how to change your appliance, to fitting and supply questions, to lifestyle and more. We’ve spent some time talking with ostomates, including Dawnette Meredith, an active ostomate advocate, author of Awesome Ostomy and creator of the Awesome Ollie, the Teddy Bear with an Ostomy, to develop a list of the best resources we’ve found to get helpful advice, products and services for living life with an ostomy.
ASSOCIATIONS & COMMUNITIES
AMERICAN CANCER SOCIETY (cancer.org) – Provides a 24/7/365 hotline for cancer patients and online ostomy guides with information on ostomy types, pouching systems and care.
CROHN'S & COLITIS FOUNDATION OF AMERICAN (crohnscolitisfoundation.org) – Find everything you need to know about Crohn’s and Colitis on this website, including, how to manage life with an IBD, resources, research, books, local chapters and support groups, videos and more.
FRIENDS OF OSTOMATES WORLDWIDE (fowausa.org) – Volunteer, non-profit organization that provides supplies and educational materials to ostomates in need around the world.
INSPIRE (inspire.com/groups/ostomy) – Online support community for ostomates that offers forums for discussing life experiences and asking questions of fellow ostomates.
OSTOMY CANADA (ostomycanada.ca) – An Ontario-based organization that provides guides, support groups, clinics, “Ask an Expert”, lifestyle information, events, magazines, newsletters and more for ostomates living in Canada.
OSTO GROUP (ostogroup.org) – A not-for-profit organization that receives unused products and supplies and makes them available to those in need for free. Customers only need to pay a nominal shipping fee.
OSTOMY INTERNATIONAL (ostomyinternational.com) – Coordinators of World Ostomy Day, their mission is the advancement of surgical research, training and advocacy for ostomy patients.
PULL-THRU NETWORK (pullthrunetwork.org) – Dedicated to providing information, education and advocacy for families with children born with an anorectal malformation or colon disease and any of the associated diagnoses. They offer forums, educational resources, seminars and events.
UNITED OSTOMY ASSOCIATIONS OF AMERICA (ostomy.org) - A national network founded in 2005 to promote quality of life and advocacy for people living with ostomies and continent diversions through support groups, educational resources and guides, discussion boards, conferences and events, and the Phoenix Magazine. This organization also offers donated supplies for under insured ostomates.
WOUND OSTOMY CONTINENCE SOCIETY (wocn.org/page/Nurse_Referral) – A professional, international nursing society of more than 5,000 health care professionals who are experts in the care of patients with wound, ostomy and incontinence. The Society’s website offers the ability to search for local WOCN nurses.
BLOGS & MAGAZINES
AWESOME OSTOMY (awesomeostomy.com) – Created by Dawnette Meredith out of a desire to help fellow ostomates, she shares practical lifestyle strategies for living with an ostomy through her informative video blog.
OSTOMY OUTDOORS (ostomyoudoors.com) – Find inspiration for getting back to nature by following Heidi Skiba, an active 45-year-old who chronicles her return to the world of outdoor adventures with a permanent ileostomy.
THE PHOENIX (phoenixuoaa.org) - The UOAA's official magazine for ostomates, including anyone living with a colostomy, ileostomy, urostomy and continent diversion. Issues are delivered quarterly and cover a range of important topics that address the needs and concerns of both new and experienced ostomates.
STOLEN COLON (www.stolencolon.com) – Motivating blogger and mother of two, Stephanie Hughes, shares her experiences living with a permanent ostomy since 2012. Get insights into pregnancy with an ostomy, frequently asked questions, and helpful stories from fellow ostomates.
UNCOVER OSTOMY (uncoverostomy.org) – Founded by Jessica Grossman, Uncover Ostomy is an online awareness campaign centered around developing conversations, social sharing, and community, to change the way the world views the ostomy.
VEGANOSTOMY (veganostomy.ca) – Prolific blogger, Eric Polsinelli has been living with a permanent ileostomy since 2013. His site is filled with countless tips, tutorials, videos, inspiring stories and reviews on care, supplies, products, IBD, diet and more. He offers a newsletter as well to get his helpful insights delivered right to your inbox.
OSTOMY CONNECTION (ostomyconnection.com) – This online magazine is a hub for ostomy information and was started by ostomate, Christine Kim, to ensure a place for ostomates to find inspiration, news and culture, lifestyle and social awareness all in one place.
UOAA NATIONAL AND REGIONAL CONFERENCES (ostomy.org/Conferences_and_Events.html) – The UOAA offers national and regional events throughout the year to engage with fellow ostomates.
YOUTH RALLY (youthrally.org) – For more than 30 years, this summer camp has hosted children for five days of fun and education bringing together kids and teens (1-17) living with conditions of the bowel and bladder. This year’s annual event is July 16-21, 2018 in Boulder, CO.
OSTOMY CANADA YOUTH CAMP (ostomycanada.ca/ostomy-youth-camp) – Taking place at Camp Horizon in Bragg Creek Alberta, this six-day camp offers children ages 9 to 18 with ostomies or other special related needs the opportunity to participate in fun and educational camp activities. The event takes place July 8 – July 13, 2018. Register by June 30, 2018.
PRODUCTS & SUPPLIERS
AWESTOMY (awestomy.com) – Shop for undergarments designed for women with ostomies and wraps for both men and women that provide added protection and support for working out, swimming and intimacy.
COLOPLAST (coloplast.com) – A global organization that develops products and services for ostomy care, and publishes the Ostomy Life Study review, a recurring publication that shares insights on how the body profile of an ostomate and the shape of the peristomal area affect quality of life. Samples can be ordered on individual product pages.
CONVATEC (convatec.com) – This global medical products and technologies company focuses on therapies for the management of chronic conditions, including ostomy care. They also offer educational material, online communities, and an easy way to request free samples.
CYMED (cymed.us) – Creators of the MicroSkin® Ostomy Pouching Systems for all types of ostomies. Microskin is a transparent, hypoallergenic polyurethane film designed to improve comfort and durability along with being breathable and transparent for better skin health and monitoring. They offer free samples for patients and nurses.
GENAIREX- SECURI-T USA (securitusa.com) – The fourth largest manufacturer of appliances and accessories in the USA, Securi-T offers one-piece and two-piece ostomy pouching systems as well as a variety of accessories for skin care, leak prevention and odor protection. They also offer a link to order samples.
HOLLISTER (Hollister.com) – An independent, employee-owned company, Hollister develops, manufactures, and markets healthcare products and services worldwide, including Hollister and Dansac Ostomy care products. Sample orders can be placed here.
MARLEN (marlenmfg.com) – The oldest and original ostomy care manufacturer in the USA, Marlen offers an extensive variety of care products, including one-piece and two-piece systems for ileostomies, colostomies and urostomies. The company also sells products in Canada, UK, Europe and Japan. Patients and nurses can request free samples.
MEDICAL MONKS (medicalmonks.com/ostomy) – This online hub provides a simple way to research and find ostomy care supplies, products and helpful information all in place. They also offer pricing discounts for members and can assist in billing Medicare or insurance companies.
NU-HOPE LABORATORIES (nu-hope.com) – Founded in 1959 by ostomate, Edmund Galindo, to offer better ostomy care solutions, Nu-Hope manufactures and sells a wide range of products, including belts, pouching systems, adhesives, skin care and barriers as well as accessories. They offer free samples with free shipping in the US and Canada, for all other countries a shipping fee will be charged.
OSTOMY SECRETS (ostomysecrets.com) – Owned by ConvaTec, Ostomy Secrets offers undergarments for men and women, and wraps for men, women and children for added pouch support. Skin care products are also available.
STEALTH BELT (www.stealthbelt.com) – Designed to help reduce leaks and help support an active lifestyle on land and in the water, Stealth Belt is a custom ostomy support belt with a zippered pouch that allows for easy access to empty an appliance without the removal of the belt.
STOMA WORKS (stomaworks.co.uk) – A UK-based company that provides custom ileostomy and colostomy accessories as well as its newest product, the Riksack, which is a secure emptying and changing system for all ostomy types. Additional fees apply for shipping outside of the UK.
STOMADOME (stomadome.com) – Helping to protect against daily impact from exercise and other activities, the StomaDome is an inexpensive, and easy to use stoma guard.
CORSTRATA (Corstrata.com) – Founded by experienced ostomy and wound care healthcare professionals, Katherine Piette and Joseph Ebberwein, Corstrata provides live consultations with certified ostomy nurses in the privacy of your home for non-emergent ostomy issues.
While this is not an exhaustive list of every resource, service, product or blog available to ostomates, it should help anyone beginning their journey, or even those with several years under their belt, start to find the answers and the support they need. As a trusted service provider for the ostomy community, one of our goals is to help connect you with the growing network of ostomy resources, support groups and services that will best help you live life better with an ostomy. Contact us today to learn more about Corstrata.