10 Reasons to Join a Crohn’s Support Group Nowby Lara DeSanto Health Writer
Living with Crohn’s disease, a form of inflammatory bowel disease (IBD), can take its toll emotionally as well as physically. And on top of living with a chronic illness, we’re still in the middle of a pandemic—and winter is coming. So if you’re struggling right now, you’re certainly not alone. Joining a support group for people with Crohn’s is one way to get the extra support you need. Keep reading to learn more about Crohn’s support groups and the top reasons why you should join one now.
First: What Is a Support Group?
It's a safe space for people with this condition to come together. Typically, a facilitator may lead introductions, set ground rules, or step in when needed, but the group members themselves really run the group, says Amy Mann, licensed clinical social worker at in the Inflammatory Bowel Disease Program at Cedars Sinai Medical Center in Los Angeles. “It’s an open place where you can bring anything that’s on your mind, body, or soul or exacerbating your IBD—there’s really nothing you can’t bring up in group.” Keep reading to learn how a group could benefit you.
It Could Actually Help Your Symptoms
Navigating Crohn’s can be downright stressful—plus, IBD increases risk of depression and anxiety, according to the Crohn’s and Colitis Foundation. “Emotional support is so key, and there are increasing metrics showing these are major factors that actually impact IBD disease state and activity,” says Christina Ha, M.D., an IBD gastroenterologist at Cedars-Sinai in Los Angeles. That’s it's important to manage your mental health. “Going to support group [is one way to] slow down the body, mind, and gut and can really reduce the symptoms and maybe even the actual inflammation going on,” adds Mann.
You’ll Feel Really Understood
Living with Crohn’s disease can feel isolating, especially if you don’t know anyone else going through the same thing—but you don’t have to go through the journey by yourself. Support groups are a way to connect with others who understand the unique experiences of living with this chronic illness. “IBD can be an embarrassing chronic illness, and being able to sit in a room with other people and share the nitty-gritty of an ostomy exploding, the noises a body makes, or the anatomy changes of having IBD—it’s just invaluable,” says Mann.
It Will Keep You Off ‘Dr. Google’
In addition to connecting with others who just “get it,” support groups also provide the opportunity to hear new perspectives on all things Crohn’s that may help you make decisions for your care. “You get all of these varying ages, people on different medications, or different surgical paths, and so people can share their experiences in wonderful ways,” says Mann. “For example, if you’re on the fence about say a j-pouch surgery, you can come to support group and see what other people are saying about it and hear other people’s experiences, rather than going down a deep Google path.”
You Can Vent Without Judgment
Let’s face it—living with Crohn’s is no picnic. And sometimes, you just need to vent without fear of judgment. “Support group allows us to feel connected with people who are going through the same thing in a very safe and nonjudgmental manner,” says Dr. Ha. Especially during the pandemic, Mann says, people may feel like they can’t vent about their IBD—but group is a safe place to bring these thoughts and feelings, not just about daily struggles of your illness but also about broader social issues and how they are affecting you and your physical and mental health.
You’ll Hear Stories of Hope
Some people hear “support group” and envision a lot of sadness and tears, says Dr. Ha—and while it’s certainly safe and encouraged to bring these emotions to your IBD support group, know that it’s also a place to be uplifted and share positivity. “There’s so much value in hearing about successes. That’s an important message support groups can provide—so many people are doing well, and you have to hear their stories,” says Ha. So don’t be afraid to bring in your victories, big and small. “There’s a lot of laughter and shared resources that go on in group,” adds Mann.
You Won’t Feel Pressure to Share
It’s normal to feel a little nervous about joining a Crohn’s or IBD support group for the first time. “Going in with no expectations is a good idea,” says Mann. “You don’t have to talk or share if you don’t want to—you can sit there and listen.” Just being in the presence of others who are going through similar experiences can be powerful, even if you’re not feeling comfortable sharing your own story just yet, she says. Confidentiality is also a key part of group rules, so know that when you do share, it’s kept private, Dr. Ha says.
You Can Choose From Online vs. In-Person Groups
Whether you’re joining an in-person or online support group—likely the latter in the age of COVID-19—both are effective, says Mann. Some may prefer the intimacy of an in-person setting, while others may find the ability to participate from the comfort of their home to be more convenient, Dr. Ha says. At Cedars-Sinai, for example, Mann says the IBD support groups are seeing more attendees than ever during the pandemic: “Even virtually, everybody’s leaned in, super focused, and there's this sense of camaraderie that is so powerful.”
You Don’t Have to Give Up Your Privacy
When choosing a support group, consider whether it’s important to you to connect with people in your local area. “If you’re looking to hear about experiences with having care in a particular region or location, there are benefits of having the support locally,” says Mann. “But if you have more broad-ranging questions or want a greater sense of privacy, there’s value in [non-local groups].” With most groups migrating online, you have more choices than ever. There are also support groups for caregivers and loved ones of people with IBD that can benefit people in your orbit.
It’s Not Hard to Find a Group for You
Now that you’ve heard about all the benefits of joining an IBD support group, how do you actually find one? The Crohn’s and Colitis Foundation offers support groups across the country for those living with IBD as well as caregivers—and you can access them virtually during the pandemic. Find one in your area here. You can reach out to your IBD healthcare team or providers in your area to be connected to other support group options too, says Dr. Ha. “There are also IBD advocates who are active on social media who can help steer the way too,” she adds.
Bottom Line: The Benefits Are Great
If you’re living with Crohn’s and feeling isolated, support groups can offer you the connection you need to keep moving forward. “Support groups are an underutilized resource,” says Dr. Ha. “If we think about the incidence and prevalence of Crohn’s and colitis increasing across age groups in the U.S., we need to be able to engage our patients to create a better sense of community.” Support groups, along with other supportive resources for people with IBD, are a great way to build that network. “After patients go to group, they realize, ‘That was so wonderful, I needed that,’” says Mann. “It really is a community.”