How to Get Online Ostomy Support During COVID-19

As social distancing measures continue, you may require access to physical and mental wellness support. If you are looking for some local support or resource, your stoma nurse is likely to know of options available within the area you live.

Online communities offer a chance to connect with people who understand what it is like to live with a stoma. Many people find it useful to connect with people sharing tips and drawing on their own experiences.

Stoma support groups, patient associations and forums are often useful ways of accessing peer support.

Charities and associations

Many charities and trusts offer stoma support. Here are a handful:

Purple Wings Charity
Purple Wings is a tailor-made service offering grants to help those living with a stoma to regain confidence.

Crohn's & Colitis UK
This charity offers confidential support and advice to those affected by Crohn's Disease or Ulcerative Colitis. It is the largest of its kind in the UK, offering information for all, including friends, family, medical professionals and employers.

Other associations:

• Stoma Wise
• Colostomy UK
• Ileostomy and Internal Pouch Association
• Urostomy Association
• Mind.org
• Cicra
• Kingston Trust
• Breakaway Foundation
• Inside Out Stoma Support Group
• Bladder and Bowel Community
• Action Bladder Cancer UK

You may access NHS portal to find support groups in your local area.

Facebook groups

Colostomy UK Support
Colostomy UK’s Facebook support group has been running since 2012. Offering guidance to ostomates, their families, friends and carers. This is a private group (roughly 8,500 members), initial access requires approval. Once approved you can share your thoughts and read about other people’s stoma experiences. 24-hour stoma helpline available Click here to learn more

Colostomy and Stoma Support
This supportive group share experiences of living with colostomy, ileostomy and urostomy. New members are encouraged to participate in discussion after initial approval.

The Real Ostomy Support Group
ROSG is a place for all things to do with stomas. Members are free to ask for advice, if group admins can’t help, they’ll connect you with someone who can. The group description proudly details, “we are here for you to chat to, to make friends, to help, to offer support and just let you rant and rave whenever you feel like it.” It’s worth reading through the group rules before posting; for instance, graphic photos are only allowed in the comments.

Stoma and Ostomy Support Group
Almost 8,000 members providing help, advice, and moral support for people living with a stoma and stoma-related issues. Topics cover ileostomy, urostomy, colostomy, J-pouch, jejunostomy, nephrostomy, hernia, fistulas and reversals. Like many groups, this one is also private – your join request will be approved upon answering some simple questions.

Other Facebook groups:

• Ostomy Buddies
• Ostomy Fashion
• Stomawise Ostomy Support (SOS)
• Life with an Ostomy
• Reversals – Ileostomy and Colostomy Reversal Support
• Ileostomy and Stoma Support Group UK
• Living with a Colostomy
• Ostomy Lifestyle Athletes
• Ladies Ileostomy group

Forums

If you don’t use social media, or you prefer to join an online stoma community away from your profile, forums are a great alternative.

This is a list of some of the most active forums/threads:

• https://www.inspire.com/groups/ostomy
• http://forum.iasupport.org/
• https://community.macmillan.org.uk/cancer_experiences/ileostomy_and_colostomy_discussions/discussions
• https://www.reddit.com/r/ostomy/
• https://www.cancerresearchuk.org/about-cancer/cancer-chat/
• https://patient.info/forums/categories/gut-bowel-and-stomach-16
• https://healthunlocked.com/colostomy-care/posts

Further information

There is valuable guidance and information on stoma care in the Hollister Ostomy Learning Centre.