What to Expect at an Ostomy Support Group

When I walked into my first ostomy support group, I didn’t know what to expect. It was two weeks before I was scheduled to get my ostomy surgery and I wanted to know what my life would be like after my colectomy. I found the information I was looking for there, but I also found something I didn’t expect to find – comfort.

Since then, I have attended and spoken at dozens of ostomy support groups around the country. Each group is unique, but there are a few things you can expect no matter which group you go to.

1. Acceptance- I have always been so impressed with how open and accepting all the support groups I’ve been to have been. You may see people there who are in a different phase of life than you. I always like to point out that we all have something in common that is bigger and more important than our differing ages, cultures, life experiences, etc., and that’s that we’re all just trying to live the best life possible with our stomas.
2. Education- Most support groups have different speakers come to educate the members on relevant topics. I’ve seen WOC (Wound, Ostomy, Continence) Nurses, colorectal surgeons, manufacturer representatives (like Hollister or Coloplast reps), dietitians and many other people come to speak. In addition to learning from the speakers, there is much to be learned from the members as well. Some members may have had their ostomies for more than twenty years. Some may have tried different products and found different solutions for common issues. Use your fellow members as a resource!
3. Friendship- You may notice when you first attend a support group that everyone seems to know about each others lives, jobs, and kids. Since many people attend these meetings for years, there are many friendships formed in this safe environment. Don’t be intimidated: every support group I’ve ever been to is extremely welcoming.
4. Support- This one is a given! Support groups are very good at cheering on people who need it! Make sure you ask your questions and talk about how you’re feeling. You  have a room full of people who care and want to listen!

Where can I find a support group?

You can find a United Ostomy Association of America (UOAA) affiliated support group here by typing in your zip code.

You may also ask your local WOCN or ostomy clinic about any clinic run support groups.

For more information, see related ostomy support articles and ostomy resources here:

• UOAA Ostomy Support Groups
• Coping After Ostomy Surgery
• Ostomy Misconceptions | New Ostomates
• Telling Someone You Have an Ostomy
• Video: Body Image With an Ostomy
  

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