Tag Archives: Crohn’s disease

Links for the Ostomy Community

Posted by on November 19, 2015 under Ostomy Care | Be the First to Comment

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
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
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.

What Is An Ostomy?

Posted by on July 30, 2014 under Ostomy Care | Be the First to Comment

Ostomy pouch.

On June 21st, 2014 the charity organization Crohn’s and Colitis UK posted a picture of one Bethany Townsend. As of this writing, the post has received nearly 250,000 likes, easily catapulting it to the status of viral. What was Townsend wearing in this popular photo? A bikini, an ostomy bag and a stoma cap.

Other sites, including Huffington Post picked up on the photo and the short article about Townsend, but failed to go into an explanation of what these items she’s wearing are and what they’re for. This led to a huge uptick in searches online for the word “ostomy” as people strove to understand why it was that Townsend needed bags to survive.

So here’s the short and sweet explanation: Ostomy bags are the term for any bag placed over a surgical opening on a body, generally in the abdomen region (you can see some examples of new bags here). The uses for these bags are to help with the work of organs that aren’t functioning properly or have been removed, such as all or part of the large intestine or the bladder. In cases such as Crohn’s disease, colitis, cancer or other issues, a surgeon will create a direct connection from the working parts to the outside of the body – creating a stoma (aka opening). Waste from the small intestine (or part of the large intestine or bladder) is dispelled through that opening, generally into a bag.

Ms. Townsend appears to be wearing an ostomy bag, and a stoma cap. The ostomy bag is there to capture the contents being emptied from her small intestine. The stoma cap, the smaller of the two items, is likely there to capture any small output from that particular stoma. As that stoma likely doesn’t produce waste on a consistent basis, it doesn’t need a full-sized bag. This is an assumption, of course, and everyone’s experience with stomas differs, but that’s a basic explanation of bags and caps.

It’s great to see such a positive response to Townsend’s photo, and to see so many people reply with proud pictures of themselves sporting ostomy bags.