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.
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.
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.
All types of inflammatory bowel disease (IBD) happen because the immune system attacks the body, because of a combination of genes and environmental triggers.”
“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’.”
“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.”
“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!”
“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.”
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
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
*IBDrelief patient survey data from 167 respondents with IBD in the UK.1
IBD = Inflammatory bowel disease.