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Ostomy Support Groups: A Complete Overview [2022]

Ostomy Support Groups: A Complete Overview [2022]

You have been talking with family, with friends, with doctors about your ostomy – everybody shows empathy, yet you don’t really feel understood?

This is natural. They haven’t experienced what you have, they haven’t felt what you have been feeling, and last but not least, they just don’t have a stoma.

There’s no better way to ease yourself than having someone who has gone or is going through similar things to speak and share stories and challenges with.

And what you probably didn’t know: It is easier than you might think to find somebody that gives you actual and real support and help! 

In this article, we will exactly tell you how. We will give you the answer to finding the right ostomy support right here:

Stoma support groups and stoma forums are great ways to connect with people that have or had gone through similar circumstances. You can find online support on  websites, facebook groups, instagram or TikTok pages, or through awareness communities. 

However, not every resource might resonate with you so we came up with the following list to find you the perfect ostomy support.

Online moral support, ostomates

Ostomy Support Group Near You

As an ostomy patient, you might feel alone and we know how important it is to have someone to share your experience, worries, and emotions and ask for some advice with someone who has been through what you are having. Even if you have a very supportive family and circle of friends, talking to somebody who knows exactly what you are feeling is totally different.

Use the search function on the following website to find the nearest ostomy support group and association in your country:

ostomyeurope.org 

Stoma Forum & Stoma Support Groups Online

In case you can’t find an ostomy support group or association near your location or you are looking for a greater variety of information, you can check for available communities and forums online.

Online groups are also a great solution to connect with other ostomates because you can meet someone who has the same type of ostomy as you. Therefore, you can share more specific information with each other, know what worked for them that could work for you too, and so much more.

Joining ostomy online groups and stoma forums will also allow you to experience the feeling of being part of a big family.

Search for online support groups for ostomates

Facebook Support Groups for Ostomates

On Facebook, there are so many groups that provide help, advice, and moral support for people living with an ostomy. Some groups that are pretty big and others are more contained but you have the freedom to choose the one that suits you and your needs better.

search engine within the Facebook groupQuick tip:  Once you have joined the FB Group, use the search tool to look for what you need to know regarding your concerns and we can guarantee that you’ll find the answer. Include relevant keywords such as “reversal”, “ileostomy”, or “women” in your search term to get an even specific list of results.

 

Facebook

 

Here are the three best groups we’ve seen so far which you absolutely must be a part of:

1. The Real Ostomy Support Group

Size 15k+ Members
Created 2016
Activity Around 70 posts per day

1700+ per month

This group covers all the topics around the stoma. It is the place where you can freely ask your questions about stoma. Members are encouraged to ask for any advice that could help them to feel better. It’s a big family where you can make friends, extend help, and get support. As most groups, this one is also private and in order to join, you have to answer some questions.

2. Ileostomy,colostomy, stoma and bowel support

Size 6k+ Members
Created 2018
Activity Around 30 posts per day

1000 per month

This community covers information all around Colostomy, Ileostomy and Urostomy (Stoma care, pancaking, leakage, exercising, diet, travel tips etc.). It is also a private group and it’s very easy to join since there are no questions asked to qualify.

3. Ostomy Buddies

Size 5k+ Members
Created 2016
Activity Around 13 posts per day

350 per month

Obviously, it’s quieter than the first two groups but still serves the same purpose. It offers support to people living with an ostomy and their family, friends, and caregivers. This group also invites people that had or are going to have an ostomy surgery to share their experiences, questions, and other concerns. It is a private group and requires you to answer a few questions to join.

Stoma Forum and Support Communities

Forums are another great tool for sharing your thoughts and concerns with other ostomates and also learn how others deal with daily challenges 

1. Reddit – Ostomy

Size 4.3k+ Members
Created 2012


This community covers information all around Colostomy, Ileostomy and Urostomy (Stoma care, pancaking, leakage, exercising, diet, travel tips etc.). It is also a private group and it’s very easy to join since there are no questions asked to qualify.

 

2. Meet An OstoMate

Size 23.2k+ Members
Created 2006

This is a community where you can find a wide range of topics to read and share your stories or questions so you can laugh out your issues and feel that you’re not alone in your journey. You can also use the platform to search for members by location, gender, age, interests, and other criteria. Another feature that this platform boasts is your ability to send and exchange private chats with a member.

 

3. Ileostomy, colostomy and stoma support

This is an online forum inside Macmillan Cancer Support website where you can meet stoma patients who are also undergoing chemo, struggling with cramping, diet, and other issues, family members who are having troubles with their patients, and soon to be ostomates. You will surely get the support that you need from active members willing to respond to you if they could relate to your story.

Ostomy Support on Instagram

Instagram is another happy place to hang out if you want to check out what other people are sharing about their daily lifestyle with their ostomy bag. 

These are some accounts you might want to check and connect with:

1. BagLadyMama

Size 11.5k Followers
Posts 1,097 Posts
Website/Blog www.bagladymama.net

Screenshot of the profile of an Instagram influencer

Krystal was diagnosed with Crohn’s Disease even before she turned 15. Today, she decides to share her ostomy side of life to inspire, empower, and support fellow ostomates. She is a mother of 3 and loves sharing tips and information on how to still live a comfortable and happy life even with an ostomy bag.

2. OstomyInspo

Size 5.9k Followers
Posts 1,495 Posts

Screenshot of the profile of an Instagram influencer

The page shares stories and inspiration from ostomates who are living with an ostomy bag but still enjoying an active and healthy lifestyle. If you want to get ideas and feel inspired, go ahead and scan their posts because there are a lot of different stories you could relate to.

3. MyIleostomy

Size 1.2k Followers
Posts 175 Posts

Screenshot of the profile of an Instagram influencer

Danielle had her Loop Ileostomy in September 2016 but prior to that she was diagnosed with Crohns when she was 8 years old. In her Instagram posts, she shared her journey from getting the surgery to healing. Check out her posts to at least lift up your spirit if you are feeling that you can’t get through your own journey.

4. OstomyDiaries

Size 5.2k Followers
Posts 626 Posts
YouTube Channel Ostomy Diaries

Screenshot of the profile of an Instagram influencer

Amber is amazing in sharing positive energy inside her page and YouTube Channel. She encourages fellow ostomates to love their bag as they love themselves. She also generously shares helpful tips and information about how to remedy your ostomy challenges.

Ostomy Support on TikTok

To also see videos of powerful women and men with a stoma really is encouraging. We found some channels for you to check out, but don’t miss to browse a bit yourself. I promise, you will find so many lovely people going through a similar experience as you!

1. AbigalGingerale

Size 17.7k Followers
About Ostomy Educator/Ostomate, Photographer, Artist, & Colon Cancer Survivor

Screenshot of the profile of an Tiktokinfluencer

Abigail got her inspiration from other video creators online sharing their story about ostomy. She saw and experienced how important it is to have colostomy support groups online and now she actively shares her own journey in her TikTok channel.

2. CharlotteTwinley

Size 18.2k Followers
About Breaking stigma of stoma bags

Screenshot of the profile of an Tiktokinfluencer

Charlotte shares information about stoma in her channel not only to encourage ostomates to live life freely but also to let other people become aware about the do’s and don’ts when dealing with stoma patients. She also shares step-by-step procedures and tips with regards to caring for yourself and cleaning your stoma bag.

3. RaeOstomy

Size 52.4k Followers
About Crohn’s Ileostomate

Screenshot of the profile of an Tiktokinfluencer Rae’s ostomy support channel on TikTok receives donations which go to medical supplies. She actively shares helpful information to break common myths about ostomy patients. Most of her videos are educational but she also shares about her personal life to make her channel more relatable to those who have similar interests and stories with hers.

4. ChronicallyFit

Size 5.8k Followers
About Crohns warrior spreading awareness

Screenshot of the profile of an Tiktokinfluencer Joel is a proud ostomy patient who is also a health and fitness enthusiast. He films himself practicing his exercise routine while showing how possible it is even with an ostomy bag. He wants to spread awareness about ostomy as well as encourage fellow ostomates to keep chasing their dreams and grow in their career no matter what.

How To Find A Stoma Nurse Near You

If you want to find an ostomy nurse that embraces your situation and gives you helpful advice, then we suggest you to get in touch with the nearest ostomy association in your area. They will help you to reach out and find nurses who know how to take care of you and your stoma. 

However, if you are not lucky and you are unable to find any nurse that specializes in stoma care, consider the recommendations below so you can reach out to a regular nurse and share this information if they could do it specially for you.

ostomaterapist nurse

Roles of a Stoma Nurse

Usually, you will be referred to a stoma nurse in your local hospital to do the following:

  • Patient support before, during, and after the surgery
  • Coordinating your treatment with the surgical team
  • Key person to contact throughout your ostomy procedure
  • Shares practical advice on how to manage your stoma
  • Trains you or helps you in caring for your stoma
  • Emotional support during your healing period

In case you can’t contact your physician directly when issues arise, you can contact your stoma nurse to help you when you are experiencing these:

  • Skin irritation
  • A bulge in the skin around your stoma
  • Recurrent pouching system leaks
  • Excessive stoma bleeding
  • Blood in your stool
  • Blood in your urine
  • Persistent diarrhea
  • Diarrhea with pain or vomiting

By the way, we have interviewed ten Stoma Nurses who shared 10 Easy Steps for the Perfect Peristomal Skin Care Routine in this article. You can also learn about a few tested products recommended by the Sapienza University of Rome which you might need in your own journey, including the Bioderm Stoma Plus, an essential ph self balancing detergent.  

Ostomy Awareness Day

More and more people are being educated about ostomy and its impact on the patients’ lives through online forums, social media pages, and websites like those mentioned above.

However, there are still groups of people who don’t get what ostomy is and its purpose. Worse, the unaware community doesn’t know how to deal with ostomy patients which leads to hurting them instead of helping them get through their journey.

This is why a designated day and event where people could come together to become a louder voice is essential.  

The Ostomy Awareness Day is celebrated the first Saturday in October. You can participate no matter where you are located. Posting an inspiring story about your friend, family, or your own journey on your social media during this day creates a ripple effect in raising ostomy awareness.

Emotional support for ostomates

World Ostomy Day

It started in 1993 through the initiative of Dr. Gerhard Englert when he was President of International Ostomy Association (IOA).

The World Ostomy Day is observed every 3 years on the same day as the ostomy awareness day to raise public awareness of this procedure and improve the quality of life of ostomy patients.  You can participate from wherever you are and help educate more people about your or your family member’s condition.

Check here to find out what you can do!

Final Thought

You and any other ostomates’ stories and experiences are unique in any way. However, we believe that there’s a certain group where you can freely join and blend in so you won’t feel alone in your journey.

Feel free to visit each of the recommended ostomy support groups, forums, and pages above and check which of these will make you feel more comfortable, welcome, and at peace to ask your questions and share your own knowledge.

Remember: if you need someone to talk to, your virtual friends are just a message away!

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