The ostomy community has come a long way since the Internet arrived. In the past, individuals did have books or group meetings, or when necessary, they could make an appointment with their WOCNs (wound, ostomy, continence nurses), but going through all that to talk about some minor skin issue was often more hassle than it was worth.
Now there are many sites where those with ostomies or those faced with the prospect of having one can learn, discuss and share. Take a look at the sites below, and comment if you have any you’d like us to add!
United Ostomy Association of America
The UOAA has a wealth of information, and there are smaller chapters all over the US. You can find online support as well as in-person!
Crohn’s and Colitis Foundation of America
The CCFA supports those with these two different diseases during all stages, including when an individual has an ostomy. The CCFA supports the Take Steps fundraising challenge which everyone, including family and friends, can get involved in.
Wound Ostomy Continence Nurse Society
If you don’t have a regular WOCN you see, or you’ve moved, this site can help you find one in your area. There is also an entire section on patient information.
Youth Rally is a great camp program that is for kids and teens with all types of bowel and bladder conditions.
Awestomy is a site that sells undergarments for those with an ostomy. There’s also a blog, which hasn’t been updated recently, but contains great, fun information for those with an ostomy.
Inflamed and Untamed
Sara Ringer has moved past her ostomy to a j-pouch, but has chronicled her entire experience with IBD on her blog, and continues to be a supportive member of the ostomy community.
Dan Sharp is Sara Ringer’s boyfriend, and faces IBD himself. He is also very involved in the IBD community and is good for a laugh.