Supporting someone with inflammatory bowel disease

If somebody you care about is diagnosed with Crohn’s disease or ulcerative colitis, you might not be sure how to support them. You may be worried about how living with inflammatory bowel disease (IBD) will affect your life and feel unsure about the future.

The support of family and friends is important for someone with inflammatory bowel disease, whether it’s getting practical support or having a listening ear nearby when they are feeling low, worried or unwell.

On this page, you will find useful information, links and resources to help you learn more about inflammatory bowel disease and how you can support your loved one.

I want to be able to support someone in staying well with IBD

Between and during flares, it’s important steps are taken to keep as well as possible. You and your loved one may have questions about managing aspects of everyday life such as working, eating, travelling and intimate relationships. You can find information on these topics and many more in our living well with IBD section.

I want to learn more about treatment options for IBD and who is involved in the IBD care team

Finding the right treatment and getting on the road to recovery is a priority for those with IBD. Read more on finding the right treatment for IBD and about the different healthcare professionals who will form the care team for someone living with IBD

What can I ask my loved one’s doctors?

By educating yourself about your loved one’s condition and learning how to communicate effectively with specialists, you can get the information you need to better understand their IBD and therefore support them better.

If you are unsure what questions to ask here are a few suggestions:

• What impact will my loved one’s condition have on daily activities such as work, exercise, hobbies, and personal hygiene?
• What is considered normal for Crohn’s disease/ulcerative colitis?
• What do we need to know to care for my loved one immediately after they leave the hospital?
• Should my loved one be on a special diet?

If you are attending appointments with your loved one, write down any of your concerns and questions. Consider speaking to other family members, so you know what they're worried about too.

When you feel comfortable and knowledgeable about the condition and its management, it will be easier for you to communicate this information to other family and friends who also want to help.

What else can I do to help?

You play a very important part in the recovery of your loved one and their long-term adaptation to their condition. Your role can be quite varied and depends on the type of relationship you had before diagnosis.

It can help to learn about your loved one’s condition, whether this is Crohn’s disease or ulcerative colitis, their surgery if they have had any, or the new skills needed to help take care of a stoma, should they receive one.

Do not hesitate to speak to the stoma care team to help you get the knowledge and skills you need as a caregiver.

Encourage your loved one to take control of their care. This will help them feel self-confident, which can help them in other areas of their IBD journey – gaining autonomy has been shown to improve patients’ lives.

Your loved one can draw significant strength from your family environment, which can contribute in various ways to their autonomy.

What if I need support?

As a caregiver, you may be experiencing your own physical and emotional struggles. They can range from disbelief and shock to fear and anger. You might want to hide your feelings so as not to further burden your loved one. However, suppressing your emotions can lead you to feel emotionally exhausted.

You may also experience changes to your lifestyle – your daily schedule may now include more tasks as you assume additional responsibilities for your loved one. Caregivers often experience exhaustion, restlessness and sleep disruption.

You can help yourself by:

• Sleeping enough
• Taking breaks for yourself
• Exercising
• Asking for help when you need it
• Being honest about your feelings
• Seeking support from other caregivers and finding comfort in knowing you are not alone

*IBDrelief patient survey data from 167 respondents with IBD in the UK. 54% of respondents were ‘very comfortable’ discussing their condition with close family (scoring 8/10 for comfort) while 27% rated their comfort in discussing their IBD with friends as 8 or more out of 10.¹