If you feel alone with your ostomy, as if no one around you quite understands, you are far from the only one. An ostomy support group is a room (or a screen) full of people who do understand, and there is likely one you can join. Most first meetings are gentle: you can bring someone and simply listen.
That lonely feeling is common, especially in the first months after surgery. An ostomy sends stool or urine out through a stoma (a small opening on the belly) into a pouch (the bag that collects it), and it rarely comes up over dinner. Even with loving family close by, many people feel no one quite gets it.
This article covers what a first meeting is usually like, how to find a group near you or online, and how to bring the people you love along. Start with the short tool below to see which kind of support fits you right now.
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At a glance
| Who it helps | People living with an ostomy, people preparing for surgery, caregivers and family |
|---|---|
| Where groups meet | Often in hospitals, sometimes the one where you had surgery, and online by video |
| How to find one | The UOAA Support Group Finder at ostomy.org, or ask your hospital ostomy nurse |
| Before you go | Call the contact to confirm the group is meeting, the date, the room and parking |
| At your first meeting | You can simply listen, bring someone, and ask about supplies, food or clothes |
| If none is nearby | Join a virtual group, ask the ostomy nurse, or call the UOAA information line |
Why living with an ostomy can feel so lonely
Friends ask about the surgery and family helps where they can, yet nobody else in the house is living this part of your day. You are learning to empty a pouch, care for the skin under the wafer (the sticky skin barrier that holds the pouch on), and read your output (whatever comes out of the stoma), often while still healing.
Part of the loneliness comes from the subject itself. Having an ostomy is not like having a heart condition. Because it involves the body’s waste, many people feel embarrassed to bring it up, and conversation does not flow easily in general health groups that are not focused on ostomies.
For some, the ostomy arrived without warning, after emergency surgery for what felt like stomach pain or constipation. Others felt relief after years of illness. Neither experience is wrong, and both can leave you wishing you could talk to someone who has been there. If you are in the early weeks, your first 30 days with an ostomy may help.
One man described coming home alone to his apartment after two weeks in the hospital following emergency surgery. The first time he emptied his pouch by himself, he made a mess and ended up in tears, afraid he had lost his attractiveness, his independence and his chance at another relationship. When he shared it online, other ostomates answered with their own messy beginnings. He later came back to thank them, saying their replies had helped him feel less alone.
Feeling this way is part of adapting to life with an ostomy, not a sign you are doing anything wrong. Being met by people who know is exactly what a support group offers in person.
What is an ostomy support group?
An ostomy support group is a regular gathering of people living with a colostomy, ileostomy or urostomy, along with people preparing for surgery, caregivers and family. Members share what has worked for them and ask questions, and many form friendships that last for years.
Groups affiliated with the United Ostomy Associations of America (UOAA) meet in communities across the country, and UOAA lists hundreds of them, in person and virtual, in its Support Group Finder. Many meet in hospitals, sometimes the same hospital where you had your surgery. Many other countries have their own national ostomy associations with local groups too.
Groups ebb and flow, much like the people in them. Some are busy, some have paused for a season, and some are looking for a new leader, so it always pays to call ahead.
From 14 years of conversations with ostomates
In 14 years of conversations with ostomates and their families, one surprise comes up again and again: most people had no idea there were local ostomy support groups at all. Many of those who do go find deep comfort in each other, the kind that is challenging to find anywhere else. If no one has mentioned a group to you yet, there may still be one close by.
How do you find an ostomy support group near you?
Finding a group usually comes down to one search and one phone call.
- Search the UOAA Support Group Finder. Enter your zip code in the UOAA Support Group Finder on ostomy.org to see affiliated groups near you, each with a contact person.
- Call or email the contact. Ask whether the group is meeting right now, the next date, the room and where to park.
- Ask your hospital. The ostomy nurse where you had surgery (often called a WOC nurse, for wound, ostomy and continence) may know which groups are active, and some hospitals host one.
- Reach out to UOAA if you hear nothing back. UOAA suggests calling 1-800-826-0826 or emailing info@ostomy.org if a listed contact does not respond within 48 hours.
Why a quick call before you go matters
A listing can be a step behind real life: a meeting may have moved rooms, changed its schedule or paused. A short call saves you from a locked door and gives you one friendly voice to recognize when you walk in. It is fine to say you are nervous, and to ask whether someone could meet you at the entrance.
What happens at your first ostomy support group meeting?
Every group has its own personality, but first meetings tend to follow a gentle pattern. People arrive and find a seat, and there may be coffee and a few minutes of chatting. The leader usually welcomes everyone and may invite introductions. Your first name is enough.
Then the conversation opens up to the everyday details that rarely come up anywhere else: which pouch stays put, how to handle a leak, what to wear, which foods surprised people. One of the most common things said in these rooms is that people wish someone had told them the first month is not what the rest of life will look like.
What you can do at your first meeting
- Simply listen. Many people spend their first meeting or two just taking it in, and that is a full way to take part.
- Bring someone. A spouse, adult child or friend can sit beside you. Family and caregivers are often welcome.
- Ask practical questions. Supplies, food, clothes, travel and stoma sounds are exactly what these groups are for.
- Step out when you need to. You can leave for the bathroom like anyone else, without explaining.
You may also hear laughter. Some people give their stomas names; others prefer plain language. Some call themselves ostomates (people living with an ostomy), others a person with an ostomy. Whatever words feel right to you belong in the room.
What if walking into a room of strangers makes you nervous?
Feeling a little anxious before your first meeting makes complete sense. A few small steps can make the walk from the car to the door feel lighter.
- Arrive a few minutes early. Meeting people one at a time as they come in is often easier than walking into a full circle.
- Sit near the door so stepping out for the bathroom is simple.
- Empty your pouch before you leave home and pack a small change kit, so you know you are prepared.
- Plan for stoma sounds. Many people find that a hand resting gently over the pouch (without pressing) or an extra layer of fabric softens the sound, and some find a small, regular meal works better than skipping one.
Everyone in that room understands stoma sounds, so a gurgle there is met with a knowing smile. For quieter settings elsewhere, these ideas for ostomy bag noise in meetings can help.
When someone in an online ostomy community shared that they were too anxious to leave home for more than a couple of hours, the replies came from people who had been there. Some suggested starting with a drive around the neighborhood or a coffee at a familiar place. One person wrote that they had spent their own first month scared and crying, and had since become much more comfortable going out.
That is the spirit of a good support group: people a few steps ahead, turning around to wave you forward. You do not have to be fearless to walk in.
Can you join a virtual ostomy support group from home?
Yes. If you cannot travel, are still recovering, live far from a group or simply want to start from your own chair, UOAA lists virtual support groups that meet by video. They include a national group with new speakers and topics at each meeting, and groups for specific communities, such as men living with an ostomy and LGBTQ+ ostomates.
Starting online is a gentle way in when you are nervous. You can listen from your kitchen table, step away whenever you need to, and see faces before you ever share a room. Test the link a day early, and ask the host whether you can keep your camera off at first.
One ostomy advocate described feeling isolated after her surgery and starting an online community so she could connect with other people living with an ostomy. Sharing her experience helped her find those connections and build her confidence.
What if there is no ostomy support group near you?
Sometimes the closest group is a long drive away, or the local one has paused. You still have options.
- Ask the ostomy nurse at your hospital. They may know of a group that is not listed online, or an experienced ostomate who is glad to talk.
- Join a virtual group while you keep an eye out for a local one.
- Check again in a few months. Groups restart and new ones form, often when someone who once felt alone decides to gather others.
If loneliness or anxiety keeps you from daily life even when your pouch is working well, talking with a counselor can help alongside peer support. Life after ostomy surgery covers more of what the months ahead can look like.
Can caregivers come to an ostomy support group?
In most cases, yes. UOAA invites caregivers, family and friends to its affiliated groups, and caregivers often have just as many questions as the person they care for. They are also the people nobody remembers to check on.
One young husband caring for his wife after major medical complications described feeling isolated and exhausted, with few people to lean on, even though his wife could manage some things on her own. His experience shows how lonely caregiving can become, even when the person you love is not fully dependent on you.
Going to the first meeting together, then to a session alone, gives a caregiver room to speak openly. It also gives the people you love something concrete to do: drive you, sit beside you, or ask afterward what you learned.
Feel surrounded, not alone
My Ostomy Blueprint includes a Support Circle section that lists the support groups nearest your city and shows how to bring the people you love into your plan. It is written from your own story, so your next step feels clear.
Start My BlueprintThe people who help others later
Many of the people offering advice in ostomy support groups once stood in their own bathrooms feeling scared and overwhelmed, wondering how they would ever manage. Now they are helping someone else through it. Today you may be the one who listens. A year from now, you may be the one saving a seat for a nervous newcomer.
The Stoma Stifler began in exactly this spirit. An engineer made a quiet guard for his mother, who had an ostomy and noticed it made noises. Others in her support group shared the same concern, and she enjoyed giving one to each person in her group who needed it. If stoma sounds make a quiet meeting room feel daunting, it is a firm, quiet guard sized to your pouch that softens those sounds and protects the stoma from bumps, seat belts and hugs, worn under an elasticized undergarment or attached to your own undergarments, ostomy belt or hernia belt with the optional kit pieces. For the trip, the Lyhaxon hanging toiletry bag hangs on any hook with dry and wet pockets, so a full change kit is at hand in any bathroom.
Stoma Stifler
See the Stoma StiflerA firm, quiet stoma guard that fits all one-piece and two-piece pouch systems, so there is nothing to measure. Protects the stoma from bumps, seat belts and hugs, and softens stoma sounds. Wear it under an elasticized undergarment, or attach it to your own undergarments, ostomy belt or hernia belt with the optional kit pieces.
Lyhaxon Hanging Toiletry Bag
View on AmazonHangs on any hook, with separate dry and wet pockets, so a full change kit is at hand in any bathroom.
As an Amazon Associate, Stoma Stifler earns from qualifying purchases. Disclosure
Support in these rooms flows both ways. The people in your group will remember the day you first walked in, and someday you will remember theirs.
Your story could help the next person walk in
If you have been to an ostomy support group, or you are thinking about going, your experience matters. What helped you walk through the door? What do you wish someone had told you first? Email info@stomastifler.com. With your permission, your words may be shared without your name to help the next person who feels alone.
Research that backs up this guidance
Research on ostomy support groups is still growing, but it points in a hopeful direction. People attending groups describe hope, belonging and the relief of not being alone, and one study found better adaptation and quality of life when people joined a support group alongside routine care.
Feeling supported matters more broadly too. More family support has been linked with better quality of life in people with a colostomy, peer-support programs show promising but mixed results, and in one video-based program, people who attended more sessions saw more benefit. Support from staff with ostomy expertise also stands out.
| What the research found | Source |
|---|---|
| Adults attending ostomy support groups described the group as giving them hope, a feeling of belonging and the sense of not being alone, along with more confidence and less shame about rejoining everyday life. | Byfield, J Wound Ostomy Continence Nurs, 2020PubMed ID 32925590 |
| In a non-randomized study, people with an intestinal ostomy who attended a support group in addition to routine care had better adaptation and quality of life scores than people who received routine care alone. | Sayar and Vural, J Wound Ostomy Continence Nurs, 2025PubMed ID 41235849 |
| A scoping review of 14 publications on peer-support programs for adults with an intestinal ostomy found several reports of improved quality of life and self-management, though programs and study designs varied widely. | Teixeira et al., Nurs Rep, 2026PubMed ID 42784090 |
| In a randomized trial of video-based group sessions led by ostomy nurses and peer ostomates for cancer survivors, there was no clear overall benefit, but people who attended more sessions showed gains in confidence managing their ostomy, some quality of life areas and anxiety. | Krouse et al., Cancer, 2023PubMed ID 37905783 |
| Among people with a colostomy, more social support from family was linked with better health-related quality of life, and the link grew stronger the longer they had lived with their colostomy. | Leyk et al., J Wound Ostomy Continence Nurs, 2014PubMed ID 25377109 |
| In adults with an ostomy in Korea, support from medical staff with ostomy expertise had a stronger influence on psychosocial adjustment than self-efficacy or family support. | Nam et al., Int Wound J, 2019PubMed ID 30793862 |
What this means for you: What this means for you: the research and the stories line up. Showing up, even just to listen, connects you with people who understand. If a room feels like too much today, a virtual group or one conversation with your ostomy nurse is a real first step.
Frequently asked questions
Do you have to talk at an ostomy support group?
No. Many people spend their first meeting or two simply listening, and that is a full way to take part. If there are introductions, your first name is enough, and you can pass on anything you would rather not share. Many people find that hearing others describe the same leaks, sounds and feelings is comforting in itself, and they speak up later, when they feel ready.
Is an ostomy support group only for people with a colostomy?
No. Groups affiliated with the United Ostomy Associations of America welcome people with a colostomy, ileostomy or urostomy, as well as people preparing for surgery, caregivers, family and friends. Some virtual groups focus on specific communities, such as men living with an ostomy or LGBTQ+ ostomates. If you have a less common type of ostomy, ask the group leader when you call, and they can tell you who usually attends.
How soon after surgery can you go to an ostomy support group?
There is no set rule. UOAA invites people who will have surgery as well as those who already have, so some people attend before their operation. After surgery, many wait until they feel well enough to sit through a meeting and travel. Ask your surgical team when it is safe to drive, and consider a virtual group in the meantime, since you can join from home while you heal.
What should you bring to your first ostomy support group meeting?
Bring a small change kit (a spare pouch and wafer, wipes, a disposal bag and spare underwear), a water bottle, and a short list of questions about supplies, food or clothes. Many groups welcome a companion, so bring someone if that helps. Empty your pouch before you leave home, and save the leader’s phone number in case you need directions on the way.
Last updated October 2026. Written from 14 years of conversations with people living with an ostomy and the people who care for them. General education only; it does not replace your surgeon, ostomy nurse or dietitian.