How To Create An Ostomy Support Network Online & Offline

One of the most important things that you can do for yourself is to try and get a community of people that are like you and going through the same thing. Many people can say “I know what you are going through”, but few REALLY understand what you are going through. Here are some links to help you connect, commiserate, and bookmark. We’re just one stoma hug away. 🙂

This is NOT a comprehensive list. If there are sites that are not on here, we’d love for you to comment. We’re always on the lookout for more quality content!

Offline Support – Person to Person

UOAA Affiliated Support Groups

The United Ostomy Associations of America does a nice job of showing a comprehensive list of in person ostomy support groups.

 

CCFA Chapters

The Crohn’s & Colitis Foundation of America is another way for you to get in touch with other Crohn-ies. This is a link of CCFS chapters for you to connect to.

Online Support Communities

C3Life Ostomy Community

C3Life provides community with discussion and lifestyle topics, and They also provide education on ostomy & product basics. Give them a try.

Intense Intestines FoundationIntense Intestines Foundation

I’m really enjoying what the folks at Intense Intestines are doing. First off, they are a non-profit organization, but they have a unique approach to their content. They are basically a social network for nothing but Crohn’s, Colitis & beyond. Now when I say social network imagine it being Facebook just for those maladies. They count on their members to keep their content fresh. Connect with others, post status updates, create your own blog, post photos, videos, events, and more. Bravo!

ostomylandOstomyLand

OstomyLand looks to be pretty comprehensive. Forums, Blogs, and Chat are all part of the site. They also have a “Lifestyle Guide” that may help answer a lot of questions for ostomates struggling with life changes with their ostomy.

Facebook Ostomy Support Groups

Colostomy Association – Very active group on Facebook, over 500 members

Coming Out of the Bathroom – Group not afraid of showing their ostomies.

Loud & Proud With An Ostomy – Community providing positive awareness of ostomies. Commited to providing up to date information of all kinds of topics and a great place to post pictures of your life with an ostomy.

My Doctor Knows Me Best From Behind – Another community to connect and post. Here we see a lot of anonymous questions posted by users to get support and answers that may otherwise go unanswered.

Young & Single With An Ostomy – A unique approach to a support group, they focus on the younger generation of ostomates looking for either dating advice or connecting with other single ostomates.

Ostomy Related Websites & Blogs

Blood, Poop and TearsBlood Poop & Tears

Want some comic relief about your digestive issues (if you don’t have one, saddle up). Jackie is rockin’ it at Blood, Poop, & Tears. The name alone makes me snicker. Jackie isn’t afraid to let it all hang out (excuse the pun) in her award winning blog. Want advocacy? As she states, she eats, breathes, and poops it.

Full Frontal Ostomy

Charis is a very active advocate in life, on her website, and through social media. She’s a permanant ostomate with a passion for the history of these diseases as well as personal training with an ostomy. No topic is taboo. Go check out her site!

Girls With GutsGirls With Guts

Girls with Guts is a website founded by 5 very strong individuals with digestive issues teaching women and girls that you can cope with IBD and more. They do outreach and encourage users to submit their own stories.

Inflamed & UntamedInflamed & Untamed

Sara runs this Tumblr blog all about support and awareness for both Crohn’s and Ulcerative Colitis. She also has many videos chronicling her life and offers up support bands on her site.

Ostomy Outdoors

Heidi Skiba is dedicated to chronicling her return to the world through outdoor adventures with a permanent ileostomy.

uncover ostomy Uncover Ostomy

Uncover Ostomy aims to create a more positive conversation about ostomies. The lovely Jessica Grossman is easily making ostomies look sexy. She runs most of the posts on the blog and the non-profit group IDEAS are behind the movement. It’s easy to see why they have a big following on Facebook.

Ostomy Related Non-Profit Groups

The Bad Tummy Foundation – This non-profit advocates for Crohn’s & Colitis as well as offer a children’s program called Bad Tummy Kids.

CCFA – The aforementioned Crohn’s & Colitis Foundation of America

Get Your Guts In Gear – Get Your Guts In Gear raises awareness for many digestive diseases through multi-day cycle events that benefit advocacy groups.

The Great Bowel Movement – Love the name & this group. They are a grassroots movement standing up for the entire IBD community. They have a great number of products, but their “Ask Me” shirts are awesome. You never know who may be walking down the street dealing with the same thing as you.

The Gutsy Generation – This non-profit aims at the younger generation of IBD patients (14 – 24 year olds). The group is sponsored by the CCFC (Croh’s & Colitis Foundation of Canada). Their main goal is to provide education/resources and help to connect with others.

IBD & Ostomy Awareness Ribbon – This group provides ribbons for a charitable donation that goes to Get Your Guts in gear. A regular black ribbon for those with IBD and a red jewel for those with an awestomy. Wear it with pride!

IDEAS  – Intestinal Disease Education & Awareness provides a multitude of topics and education for all things digestive related.

Ostomy Lifestyle – Ostomy Lifestyle is a UK charity that was established in 2007. They provide support, advice and information to anyone affected by stoma surgery on their bowel or bladder.

UOAA – United Ostomy Assocations of America, provides support, advocacy, and affiliated support meeting groups.

I hope this list gets you going to connect to other groups. Remember the more people like you that you can connect with the more comfortable you’ll feel with your body changes and help for those low or desperate moments. Ostomates, we love ya!

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About Jason

Computer nerd, lover of all random humor. Colostomy surgery in March of 2012. Exuding swagger and spreading awestomy awareness. King of ostomy underwear with pockets and ostomy wraps with pockets.

3 Responses to “How To Create An Ostomy Support Network Online & Offline”

  1. CJ Patterson August 23, 2012 at 1:51 pm #

    This ostomy support group is awesome. It is part of the Living Well Community – Chronic Illness Community, Support, and Resources

    http://www.healingwell.com/community/default.aspx?f=33

  2. jrmcintosh August 24, 2012 at 12:16 am #

    Thanks for letting us know CJ!

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  1. The Awestomy! Grand Opening & Some Thank You’s | Awestomy! - September 5, 2012

    […] and our group of WOCN nurses (Keri, Heddy, and Jana). We’d like to thank the many ostomy online support groups who helped get our name out there (you know who you are). We’d like to thank Bagnoche Sports […]

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