Supporting Someone with IBD

When someone you love is diagnosed with a life-changing illness, such as inflammatory bowel disease (IBD), which includes Crohn’s disease or ulcerative colitis, there’s a natural instinct to want to help. However, if you’re unfamiliar with IBD, knowing what to do can be difficult.

Fortunately, you can make a big difference in lots of ways. 

“People with IBD have a variety of needs, from help with navigating necessary medical care and day-to-day activities to dealing with mental health challenges and focusing on overall well-being,” said Catherine Soto, associate vice president of patient education and support at the Crohn’s & Colitis Foundation. “When they get support to address those needs, it may lessen their stress, increase their ability to cope with their disease, and potentially lead to better health outcomes.”

So, where do you start? Here are five ways you can support someone with IBD. 

1.  Learn all you can about Crohn’s disease or ulcerative colitis. The more you know about the condition and how it affects people, the better prepared you’ll be to help your family member or friend. 

When you understand the nature of IBD, you might be better equipped to support your loved one’s needs and understand their perspective. They might ask how close they’ll be to a restroom on a planned outing, for example. Or they may need to reschedule plans at the last minute. Your consideration and flexibility can lessen their embarrassment or worries and help them continue doing what they love. 

Knowledge about IBD may also help you recognize signs and symptoms of their condition, such as fatigue. You might offer to go to the grocery store, cook a meal, do yard work, fold laundry, or pick up their kids from school. Little gestures can have a big impact.

2.  See the big picture. It’s common to think of Crohn’s disease and ulcerative colitis as strictly “bathroom diseases.” But IBD can impact other parts of the body. Some patients for instance may experience joint pain, vision problems, skin complications, and anemia. Beyond physical challenges, IBD can also impact one’s mental health and emotional well-being. People can experience anxiety and depression that affect their self-image, social life, and ability to do things they love, such as travel.

3.  Be a good listener. Not everyone is eager to talk about their illness. But it’s often helpful to know they have a place to turn if they want to share their feelings, fears, or frustrations. A simple comment, such as “I’m here for you any time you need to talk,” lets them know you have a friendly ear.

It’s important not to downplay someone’s feelings by saying, ‘Things could be worse.’ Instead, offer a comment such as ‘That must be so frustrating. How can I support you?’

Your loved one with IBD might just want your understanding. Perhaps they are not ready to share their experiences and feelings with you and just want you to provide space without judgment or any directed frustration. Checking in on your loved one shows care, respect, and support. 

4.  Help reduce the stigma and promote a supportive community. Though roughly 1 in 100 Americans live with the disease, IBD can be difficult to talk about. There are many stigmas in our society including discussing bathroom issues. But you can let your loved one know that they can talk with you about their symptoms, experiences, and frustrations.

Caring communities where people understand what living with IBD is like can be valuable for caregivers, too. You can help build a community among other family members and friends by educating them about IBD and the needs of those who have it. Just be sure your loved one is comfortable with others knowing about their situation first.

“The Crohn’s & Colitis Foundation offers support groups and other support resources,” said Soto. “You and your loved one can find a supportive community that best suits your needs.”

5.  Understand their treatment goals in the context of their unique patient journey. Managing IBD involves many factors. Treatment can include dietary changes, medications, surgery, and more. Often, people may be juggling many components of their medical care from doctors’ appointments to insurance denials and seeking support. It can be overwhelming.

To support someone seeking a treatment plan or currently undergoing treatment, you might: 

• Offer to drive them to their doctor’s appointment, particularly if they are struggling with fatigue. 
• Offer to join them at their next doctor’s visit to serve as a second set of ears or a notetaker, if they would like that help.
• Help them create a list of treatment goals or priority questions for their doctor. 
• Research their medications to help them understand how to take them and any potential side effects, which can be especially helpful for loved ones of pediatric patients.

Every patient’s needs are different, but everyone involved in a patient’s journey benefits when people care and offer their support and understanding to people living with IBD.

Learn more about how to help loved ones living with IBD. If you need additional guidance, have questions or need a supportive listener, reach out to the Foundation’s IBD Help Center.

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