How to Get Online Ostomy Support During COVID-19

With social distancing measures still being enforced, it's natural to be concerned about finding the physical and mental support you need. We understand how stressful this can be.

The good news is there's no need to feel that you're on your own. There are online communities where you can connect with people who understand what it's like to live with a stoma. In each of the groups featured here, you can share tips, experiences, talk things over, and maybe let off a little steam.

Some of the groups featured here have thousands of members, others are much smaller, so it's worth exploring them and choosing those that meet your needs. One thing's for sure, you're about to meet many helpful people who are happy to listen.

Below we've listed some US ostomy organizations and discussion forums you may find useful.

Support Organizations

Bladder Cancer Advocacy Network (BCAN)
BCAN was founded in 2005 and is the only national advocacy organization devoted to advancing bladder cancer research and supporting those impacted by the disease. On their website, they provide toolkits and resources, which include ‘bladder cancer 101’ guides for people who are newly diagnosed, an FAQ page for bladder cancer patients on COVID-19, and a video series with bladder cancer experts.

Colon Cancer Coalition (CCC)
CCC works with local communities to promote prevention and early detection of colon cancer, and to provide support to those affected. What started as one woman’s vision has since grown into a national coalition of people determined to end colorectal cancer deaths by increasing screening and educating others about the signs and symptoms.

Crohn’s and Colitis Foundation
The mission of the Crohn’s and Colitis Foundation is to cure and prevent Crohn’s disease and ulcerative colitis through research and to improve the quality of life of children and adults affected by these digestive diseases through education, support, and advocacy.

Girls With Guts
The mission of Girls With Guts is to support and empower women with inflammatory bowel disease (Crohn’s disease & ulcerative colitis) and/or ostomies through the building of sisterhood and self-esteem. Their website and live events help strengthen the network to bring patients, doctors, and thought leaders together to advocate for IBD issues.

The Shadow Buddies Foundation™
Since 1995, the Shadow Buddies Foundation has been bringing smiles, hope and companionship to medically challenged children across the country and around the world. Cuddly, plush Buddies tell children that they are never alone, whatever their illness, and can proudly proclaim they have a friend “just like me.” The Ostomy Buddy, featuring a stoma with a detachable pouching system, is available exclusively from Hollister Incorporated.

Wound, Ostomy and Continence Nurses Society™ (WOCN©)
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. The Peristomal Skin Assessment Guide for Consumers was created in collaboration with WOCN and designed to help identify common skin problems, provide next steps for care or management and appropriately prompt individuals to seek care or support from a WOC nurse, NSWOC, or healthcare provider.

Online Support Groups

United Ostomy Associations of America
UOAA is a non-profit organization dedicated to providing education, information, support and advocacy for people who have or will have ostomy or continent diversion surgery. It is open to patients, caregivers, family, friends and medical professionals. All are invited to join for lifelong learning and emotional support. As well as having an educational website, online discussion board and Facebook page, UOAA has more than 300 Affiliated Support Groups in the United States. To find a local group near you, simply enter your zip code or city and state into the UOAA Support Group Finder.

Ostomy Forums

• UOAA Discussion Board
• United Ostomy Associations of America, Inc. has created a discussion board that allows members to share experiences with other people living with a stoma. Conversations span a range of topics, from wellbeing to product support.
• Crohn's & Colitis Foundation Community Forum
• Get the support you need in managing your Crohn's disease or ulcerative colitis by joining this community forum. Participate in discussion boards, hear personal stories, and ask questions to a panel of experts.

Social Media

Amber Wallace The Ostomy Diaries
Amber began suffering from inflammatory bowel disease when she was nine. She was then diagnosed with Crohn's Disease in 2008, and had a complete colectomy in 2016 after many hospitalizations. She started the Ostomy Diaries to educate, encourage and inspire others with IBD and ostomies. On the Ostomy Diaries YouTube channel, her videos are colorful, laidback, and playful. You’ll find lots of ‘5 tips for’ videos that are the culmination of her own experiences, along with one of her most popular videos on the topic of sleeping with an ostomy bag. You can also follow her on Instagram and Facebook.

Tina Aswani Omprakash Own Your Crohn's
Tina Aswani Omprakash is a Crohn’s patient and award-winning patient expert and health advocate based out of New York City. She has had Crohn’s for 14 years and has had numerous surgeries. Tina maintains a blog and advocacy platform called Own Your Crohn’s. She has done a lot of work with doctors, hospitals, the American Gastroenterological Association, and Crohn’s & Colitis Foundation to provide helpful information on COVID-19, IBD and ostomies. Her overarching aim is to normalize the rhetoric around chronic illnesses and disabilities in order to help patients own their ailments to live fuller, happier lives. In addition to her blog, Tina can be found on Instagram, Facebook, and Twitter.

Krista Deveau
Krista Deveau is a kindergarten teacher from Calgary, Alberta, Canada, who has been fighting Crohn’s disease since being diagnosed at the age of 9. On her Instagram @my.gut.instinct, she brings a fresh perspective and a positive attitude to living with an autoimmune disease and ostomy.

Joe Teeters and Danielle Gulden Double Baggin’ It
Danielle Gulden and Joe Teeters are best friends who met in an ostomy support group in Columbus, Ohio. Together, they are the dynamic duo @doublebagginit, sharing their humor and personal experiences on social media since 2015. They have also led several advocacy initiatives on behalf of the Crohn’s and Colitis Foundation. The Double Baggin’ It Facebook page and Instagram page are where they spread awareness and advocate for people living with inflammatory bowel disease and ostomies.

Further Support

If you're looking for more guidance on stoma care, you can find lots of useful information in our Ostomy Learning Center.

Whether you're a product user, a caregiver, or a healthcare professional, if you have any questions about Hollister products or services, we can help. Contact Us.