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IBD Can Be a Puzzle. An Ostomy Can Be That Missing Piece.

Ostomy Awareness Day is a special day in our community. It’s a day where ostomates and people in the greater inflammatory bowel disease (IBD) community can raise awareness and reduce stigma. It’s a day where we can educate others and spark meaningful conversations around what it means to have an ostomy.

Ostomies are life-changing and provide people living with Crohn’s disease or ulcerative colitis a new lease on life.

This year, on Saturday, October 1, Crohn’s and Colitis Canada will share a very special sneak peek at what we have planned ahead in the month of October when it comes to focusing on ostomies—you won’t want to miss it!  It is important for us at Crohn’s and Colitis Canada that on Ostomy Awareness Day and beyond be full of education, insight, and awareness about what living with an ostomy is truly like.

What is an ostomy?

Despite advancements in therapies for IBD, approximately 80% of people with Crohn’s and 20% of those with colitis will require surgery at some point in their lives¹. Surgery often includes the creation of either a temporary or a permanent stoma, also known as an ostomy. A stoma is an opening from the end of your intestine inside your body to the outside surface of your abdomen. An external bag is then attached to the stoma to collect waste^2,3.  About 10% of people with Crohn’s disease, and up to 50% of people with ulcerative colitis, will need a permanent ostomy at a certain stage of their disease course¹.

People with IBD often express that the potential need for an ostomy is among their top concerns when it comes to the treatment of their IBD⁴. But based on your personal healthcare needs, ostomies can be made permanent or temporary. J-pouch surgeries are done to avoid needing a permanent stoma in the abdomen to pass stool through. In J-pouch surgeries, a pouch shaped like the letter J from the end of the small intestine is created and attached to the rectum ^2,3.

How does Crohn’s and Colitis Canada support those living with ostomies?

Crohn’s and Colitis Canada has a variety of ways that our ostomate community can connect with one another. Keep on reading to see how you or someone you know can get involved or simply learn more about ostomies.
 

Peer Support Groups

Crohn’s and Colitis Canada is proud to offer both individual peer-to-peer and group support sessions.
Our online peer-to-peer program, Gutsy Peer Support, provides mentoring and support to people living with IBD. Participants of the program, including those living with an ostomy or considering surgery, will have the opportunity to be mentored, ask questions, and obtain support from trained volunteers that have gone through similar experiences. Participants can be provided long or short-term support, free of charge, and without pressure and no commitment.

People affected by IBD, and their caregivers, can easily connect with others over email, online chat, video and/or audio calls, using our secure and confidential online platform. Individuals can also drop-in during our virtual, bi-weekly group peer support sessions for live support and discussion with others living with Crohn’s or colitis.

Join us on Zoom on October 18^th from 7:30 to 9:00pm ET to take part in a discussion around ostomies and pelvic pouches.

Learn more and register for our Gutsy Peer Support program.
 

CampGot2Go

Meet other kids with ostomies and forge lifelong friendships. Every year, Crohn’s and Colitis Canada hosts a series of youth camps for kids aged 9-17. See what CampGot2Go is all about.
 

Education Events

Learn more about ostomies and how they can help with the management of Crohn’s or colitis.
Sign up for our special Gusty Learning Series, “Surgery and Ostomies 101” taking place virtually on November 8 from 7:00 to 8:30 pm ET, to hear an expert medical perspective on these treatment options, including types of surgery for Crohn’s or colitis, types of ostomies (permanent vs. temporary), and the benefits and risks of surgery.

Register today and ask your questions for the expert ahead of time. Can’t join us live? Register for the event and we will send you a link to the recording. This event will be offered in English, with live simultaneous French interpretation.
 

Hear from Ostomates Firsthand

On October 21, join us via Instagram Live to hear from some special members in our community as they walk us through their day-to-days, their diagnosis, and how having an ostomy has changed their lives for the better.
 

If you feel like getting involved and joining in on raising awareness and celebrating our community of “ostomates,” share your stories with us on social media @getgutsycanada.

Have questions you want to ask Brad and Renee ahead of time? Send us a DM @getgutsycanada!

 

IBD can be a puzzle. An ostomy can be that missing piece.

 
Sources:

1. Cosnes, J., Gower–Rousseau, C., Seksik, P., & Cortot, A. (2011). Epidemiology and natural history of inflammatory bowel diseases. Gastroenterology, 140(6), 1785-1794.
2. Crohn’s and Colitis Canada. Treatment and Medication – Surgery. (https://crohnsandcolitis.ca/About-Crohn-s-Colitis/IBD-Journey/Treatment-and-Medications/Surgery#caring-for-an-ostomy-). Accessed on 08/31/2022.
3. Crohn’s and Colitis Canada. (2018). Impact of Inflammatory Bowel Disease is Canada Report. (https://crohnsandcolitis.ca/About-Us/Resources-Publications/Impact-of-IBD-Report).
4. Drossman, D. A., Leserman, J. A. N. E., Li, Z. M., Mitchell, C. M., Zagami, E. A., & Patrick, D. L. (1991). The rating form of IBD patient concerns: a new measure of health status. Psychosomatic medicine, 53(6), 701-712.
5. Crohn’s and Colitis Canada. Support for You – Gutsy Support. (http://www.crohnsandcolitis.ca/gutsysupport). Accessed on 08/31/2022.