Re-adjusting to life following ostomy surgery can take time and some effort on your part. The changes can be challenging and overwhelming, from learning the right ostomy products to getting comfortable with pouches. But you don’t have to do it alone! If you or someone you know has recently undergone colostomy, ileostomy, or urostomy surgery, attending an ostomy support group could be very beneficial.
What is an ostomy support group?
These groups are safe places that promote quality of life of people with a stoma through education and fellowship. The meetings are often informal, round-table discussions on topics of interest, new product demonstrations, and more. Depending on the support group, families and caregivers can also attend.
5 benefits of attending an ostomy support group
1) It can provide a sense of acceptance about living with an ostomy
Regardless of the type of ostomy you have, know that there is a seat waiting for you at a support group. Joining such a welcoming community can help you realize that you’re not alone.
As you come in for the first meeting, you may immediately feel a sense of belongingness as each member has something in common with one another. You may form strong bonds and relationships with fellow members that make you feel supported during this challenging transition time.
2) You can find answers to your questions and increase your knowledge about stoma care, new products, and more
If you’re a new ostomate, you probably have lots of questions, such as:
- How often should I change my ostomy bag?
- How do I keep my peristomal skin clean and healthy?
- Will travel be difficult for me?
- What are the infections I should be aware of?
- Where do I find the best products that are right for me?
- What activities can I do with an ostomy?
- Will my diet have to change with an ostomy?
- Does my insurance cover the cost of supplies?
Whether you’re looking for an answer to one of these questions or you need some practical tips, support groups can help you increase your stoma care knowledge. In addition to regular meetings, some groups may have subject matter expert speakers provide educational sessions. These speakers might consist of certified ostomy nurses, surgeons, dieticians, ostomy supplies manufacturers, and other healthcare professionals specializing in ostomy care.
In addition, nothing can be more helpful than learning about fellow members’ experiences, favorite products, and lifestyle tips. Some members may have had their ostomies for several years and have developed solutions for issues you’re currently facing. Don’t hesitate to talk to them for additional support, guidance, and resources.
3) It allows you to share your feelings with peers and loved ones
While some patients consider ostomies a positive, life-saving operation, other patients may have a much more difficult experience. They may be facing several challenges that adversely affect their mental and emotional wellbeing such as:
- Lowered self-esteem
- Reduced participation in social activities
- Sexual dysfunction
- Decreased working activities
If you’re experiencing these negative impacts, the right peer support can help you address your feelings in a healthy manner. You can openly talk about what you’re struggling with and not feel embarrassed or afraid that people will not understand.
Bringing your loved ones is especially helpful when you do not feel comfortable expressing your emotions at home or want them to better understand what you are going through.
4) It offers you the ability to help other ostomy patients
As you start to thrive in life by making your group meetings a part of your routine, you may also begin to inspire and support your peers and their families. Sharing your successes could be encouraging to new members who have recently undergone ostomy surgery. Offering other members personal tips can be a great source of comfort and help.
5) It inspires you to move toward improving your quality of life
It’s completely understandable to be afraid. After all, you’ve just gone through a surgical procedure that may involve many changes in your life.
There are ostomates from around the world sharing messages of hope you can get inspiration from. Seeing how your fellow support group members slowly overcome their mental, physical, and emotional challenges firsthand is a great step toward regaining your strength and confidence. As time goes on, you might even find yourself changing your pouch quickly and going back to your regular activities, including sports and recreation.
Where to find an ostomy support group in your area
Local chapters of the United Ostomy Associations of America, Inc. (UOAA) sponsors many ostomy support groups and programs. This national 501(c)(3) nonprofit organization supports, empowers, and advocates for people living with an ostomy. To find out the nearest location where you can join, visit https://www.ostomy.org/ for more details. Due to coronavirus disease (COVID-19), face-to-face group discussions in some areas are currently not available. Some groups may have temporarily moved to an online format.
Other healthcare organizations with ostomy support groups and programs
- Cancer centers
Some cancer centers have support programs for all types of ostomies, whether or not they are due to cancer. Services that may be available include ostomy care and cancer care educational information. There are also ostomy and oncology social workers that can give you other resources.
- Wound, Ostomy, and Continence Nurses Society (WOCN)
WOC nurse volunteers in healthcare settings, like hospitals and outpatient clinics, provide support and primary care for ostomy patients. To find a WOC nurse in your area, visit https://www.wocn.org/learning-center/patient-resources/. You may need to present medical records or answer a few questions so your assigned nurse can better assist you.
Join a trusted peer coaching program
The earlier you surround yourself with people living with the same circumstances, struggles, and uncertainties as you, the sooner you can start to manage your own challenges more effectively. There are various groups you can approach if you want to connect with fellow ostomates. One such community is Better Health, which provides a personalized peer coaching program, proven to help ostomates improve their mental and physical health. For more information, please visit https://joinbetter.com/ or contact 415-475-8444.