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.
This episode of Gutcast focusses on an incredibly important part of living with IBD, which is the support offered by friends and family.
Hear from engaged couple, Rachel and Des, as they share their story of Rachel’s journey with IBD and Des’s incredible support.
The pair discuss challenges they faced and the support that Des was able to offer and offer some advice to other people in a similar situation to them on how they can support a loved one with IBD.
The views expressed in this podcast are those of the individuals involved and do not represent those of Janssen. This podcast is intended to be informative and educational and is not a substitute for professional diagnosis or treatment. This podcast was funded by Janssen Sciences Ireland UC and participants were paid for their time.
CP-364077 June 2023
The time before and just after a diagnosis can be very difficult times for everyone. Your loved one will likely be quite unwell, as well as coming to terms with their poor health and what that will mean for them in the future.
Ulcerative colitis and Crohn's disease are chronic life-long conditions that can affect many aspects of life.
Here you can find useful information on managing and living with your condition, including managing symptoms such as fatigue, mental health and stoma care, finding the right treatment, navigating the NHS and living well.
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.
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
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:
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.
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.
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:
*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