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Talking about your inflammatory bowel disease (IBD)
It can be difficult to talk about your inflammatory bowel disease (IBD), whether it be Crohn’s disease or ulcerative colitis, to other people. This can even include people who you trust, like your partner, family, and friends. You may feel embarrassed about issues you are facing, but talking to someone can be really helpful for getting both emotional and practical support.
Only 54% of people with IBD feel comfortable discussing their condition with their close family1*
– IBDrelief IBD Quality of Life Survey
Communicating challenges you are facing
Coming to terms with your inflammatory bowel disease can take some time, and it is very normal to go through a period of adjustment. You may be worried about how your inflammatory bowel disease will affect your work, school or home life and how to manage your relationships and social situations around your condition.
You might also be facing challenges regarding your body image and be worried about the stigma around your condition.
Ultimately, everybody is different – there is no right or wrong way to feel.
Despite these worries and challenges, people with IBD can have successful careers and lives with some adaptations. However, you might need to plan for tasks that are physically demanding when you are experiencing fatigue or ask for flexibility in the workplace.
Although some people will be more understanding than others, it is very likely that your friends and family will be ready and willing to support you. They will want to help you to enjoy your life. If you are comfortable telling friends, you might explain that you need to plan social activities in advance or know where the toilet is located, for instance.
Answering questions from your friends and family about IBD
You loved ones will have some questions when they learn about your diagnosis. They may look for information online or may ask you directly. We have compiled some responses to some commonly asked questions about IBD below, to support you in answering these questions.
“What is IBD?”2
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“IBD is a long-term condition and the most common types are Crohn’s disease and ulcerative colitis, and these are both chronic (long-term) conditions).
All types of inflammatory bowel disease (IBD) happen because the immune system attacks the body, because of a combination of genes and environmental triggers.”
“How will it affect you?”3
“When my IBD is active, I can have severe gut pain and digestive issues and might have to go to the bathroom a lot and often without much warning. I might lose weight because my gut gets inflamed and damaged and can’t work properly to digest food.
Not everyone has the same types of symptoms and how severe they are varies between people. My symptoms may change over time as well, with periods of remission and ‘flare-ups’.”
“Can it be cured?”3,4
“IBD is a chronic (lifelong) illness, with no cure but it can be treated well with long periods of relief from symptoms.
Treatment varies from person to person, and I might need tablets, injections, nutritional supplements, or surgery at different times.
I will be looked after by a specialist treatment team because it affects many aspects of my health and wellbeing.”
“Will I be able to tell when you are unwell?”3
“IBD can be an invisible illness so sometimes it may be hard to tell I am struggling.
I can sometimes hide that I am in pain, very fatigued or having a very hard time with my IBD and I might not look like I’m unwell, even when I’m having a flare-up. If you want to check-in on how well I am, please just ask me!”
“What can I do to help?”3
“You can offer emotional support just by talking to me and asking how things are going. It can be difficult to come to terms with a chronic condition and can be very worrying.
You could offer practical support by helping with errands if I’m very tired or experiencing a lot of gut symptoms that make it hard to leave my home. You could also accompany me to appointments if I need someone to go with.
This Gutcast episode gives some insight into a partner being diagnosed with IBD and supporting their changing needs which may be helpful to listen to.”
Crohn’s & Colitis UK (CCUK) it takes guts
Because Crohn's disease and ulcerative colitis are often invisible, difficult to talk about, and frequently misunderstood, thousands of people may feel as though they are facing these conditions alone. However, it does not have to be this way.
Crohn’s & Colitis UK have some excellent resources and suggestions for starting difficult conversations, with videos, patient stories, a Talking Toolkit, and what you can do instead if you’re really not ready yet to speak.5
A guide for friends and family: what do they need to know, and how can they support you?3
Crohn's disease and ulcerative colitis don't just affect the person with the condition. They also have a big impact on friends and family. It can feel overwhelming to find out that someone you care about has IBD, and you may be worried about how this affects their life going forward.
However, friends and family play a crucial role in helping people manage their condition and there are a number of valuable things you can do to help.
Crohn’s & Colitis UK are a fantastic source of reputable information for you and for friends, family or employers, supporting you to get on with life after diagnosis.
They provide printable downloads, videos and information aimed at different people in your life, so they can begin to understand some of the challenges you might face and how they can offer practical support.2
Only 27% of people with IBS feel comfortable discussing their condition with their friends1*
– IBDrelief IBD Quality of Life Survey
*IBDrelief patient survey data from 167 respondents with IBD in the UK.1
Abbreviations
IBD = Inflammatory bowel disease.
References
References
- IBDrelief. Impact of IBD on physical and emotional health: Findings from an IBDrelief survey. Available at www.ibdrelief.com/impact-of-ibd-on-physical-and-emotional-health. Accessed October 2023.
- NHS. Conditions. Inflammatory bowel disease. https://www.nhs.uk/conditions/inflammatory-bowel-disease/. Accessed October 2023.
- CCUK. A guide for friends and family. https://crohnsandcolitis.org.uk/info-support/information-about-crohns-and-colitis/all-information-about-crohns-and-colitis/supporting-someone/supporting-someone-with-crohns-or-colitis. Accessed October 2023.
- CCUK. Who is in an IBD team? https://crohnsandcolitis.org.uk/our-work/healthcare-professionals/build-an-ibd-team/who-is-in-an-ibd-team. Accessed October 2023.
- CCUK. It takes guts. www.ittakesguts.org.uk. Accessed October 2023.