Gut to Know - Conversational Guide for supporting a loved one with IBD

Welcome to Gut to Know A Conversational Guide for IBD Support. Crohn’s and Colitis Ireland have created this resource to help you feel confident, informed, and empathetic when speaking with someone who has Inflammatory Bowel Disease (IBD). Whether you’re a friend, family member, employer, or educator, your words can make a profound difference. 

Understanding IBD 

Inflammatory Bowel Disease generally refers to two main conditions: Crohn’s disease and Ulcerative Colitis. Both involve chronic inflammation of the gastrointestinal tract, leading to symptoms such as abdominal pain, diarrhoea, fatigue, and more.  

In both, the immune system doesn’t work properly. The body starts attacking itself causing ulcers and inflammation. They are lifelong, incurable, debilitating  and widely misunderstood. People often face a lifetime of fluctuating symptoms with periods of remission and flare-ups, meaning regular medication and in some cases surgery. This can affect every aspect of daily life, including relationships, education and work. 

Key Takeaway: IBD is not just about “having a bad stomach.” It’s a complex, often unpredictable medical condition that affects overall well-being, including mental and emotional health. 

Why This Matters 

Reduce Stigma: Despite IBD’s prevalence, many individuals feel misunderstood or judged because their symptoms aren’t always visible. 

Support Matters: A simple check-in or a thoughtful comment can reassure a person that they’re not alone. 

Empower Loved Ones: Helpful communication provides emotional strength, encouragement to seek treatment, and a sense of community. 

By focusing on empathy and respect, you can create a supportive environment that significantly improves a person’s day-to-day experience with IBD. 

General Guidelines for Support 

Listen First 

• Ask open-ended questions: “How are you feeling today?” 
• Offer undivided attention: Let them share without interruption. 

Offer Empathy (Not Pity) 

• Acknowledge their feelings and situation without expressing pity. 
• “I’m here for you” goes further than “I feel so sorry for you.” 

Choose Language Carefully 

• Avoid blame: “You’re stressing too much—that’s why you’re sick.” 
• Avoid trivialising: “It’s not that bad, everyone gets stomach aches.” 
• Use person-first language: Instead of saying “IBD sufferer,” try “a person living with IBD.” 

Respect Boundaries & Privacy 

• Ask permission before asking detailed health questions. 
• Be mindful that some days they may want to talk, other days they may not. 

Validate Their Experience 

• Acknowledge unseen symptoms: Fatigue, joint pain, and mental stress can all be part of IBD. 
• Saying “I believe you” can provide immense relief and show respect. 

Sample Questions & Comments 

Use these examples to guide your conversations. Even small shifts in wording can make someone with IBD feel more supported. 

Supportive Statements 

• “How are you doing today? I’m happy to help in any way I can.” 
• “Feel free to let me know if you need a rest or break.” 
• “Let’s do something low-key if you’re not up for a big event.” 
• “Would a different restaurant or meal plan work better for you?” 

Questions to Encourage Dialogue 

• “Is there anything you’d like me to know about your condition?” 
• “Are there any specific triggers or symptoms I can help you manage?” 
• “Do you prefer talking about it privately, or would you rather focus on other things?” 

Comments to Avoid 

• “You look fine—are you sure you’re that sick?” 
• “It’s just stress or diet. Why don’t you fix that?” 
• “I know someone who tried this miracle cure; you should too!” 
• “If you really wanted to, you’d just push through it.” 

Tips for Specific Audiences 

Friends & Family 

• Stay Connected: Keep inviting them to outings but respect a “no” if they’re unwell. 
• Offer Practical Help: Errands, chores, or rides to appointments. 
• Celebrate Small Wins: Remission periods or manageable days can be uplifting moments. 

Employers 

• Offer Flexibility: Adjust workloads, allow remote work, or provide flexible hours if feasible. 
• Ensure Easy Bathroom Access: A simple accommodation that makes a huge difference. 
• Encourage Open Communication: Let them know it’s safe to discuss their needs without fear of judgment. 

Schools (Teachers, Administrators, Staff) 

• Hall Passes & Bathroom Breaks: Permit students to leave class without drawing attention. 
• Extended Deadlines: Recognise that flare-ups or treatments may cause absences. 
• Collaborate with Counselors: Ensure emotional support is available if needed. 
• Inclusive Field Trips & Activities: Plan for accessibility and comfort. 

Additional Resources 

CCI Website & Helplines: Links to detailed IBD information, stories, and support networks. 

Local & Online Support Groups: Community forums, patient-led meetups, and digital support channels. 

Professional Guidance: Encourage seeking medical, nutritional, and mental health professionals. 

By simply shifting our words and approach, we can foster an environment of empathy and empowerment for anyone living with IBD. We hope Gut to Know: Conversational Guide for IBD Support encourages more open conversations and stronger support networks. 

Ready to Start? 

• Bookmark this Toolkit on the CCI website. 
• Share it with family, friends, and colleagues. 
• Spread Awareness about the importance of considerate communication. 
• Stay Connected with CCI for updates, events, and ongoing support resources. 

Thank you for joining us in creating a more inclusive, understanding world for people living with IBD. Let’s keep the conversation going—together. 

Sample Questions

 General (Family, Friends, Community) 

• “How are you feeling today?” 
• Open-ended and shows genuine interest. 
• “Is there anything I can do to make things easier for you right now?” 
• Emphasises willingness to help without being overbearing. 
• “I’m here to listen if you ever want to talk about what you’re going through.” 
• Offers a safe space without pressuring them to share. 
• “Would you like to stay in or do something low-key if you’re not up for going out?” 
• Acknowledges energy and symptom fluctuations, and respects their comfort. 
• “What kind of foods or restaurants work best for you right now?” 
• Shows consideration for dietary needs and potential trigger foods. 
• “I know it can be tough. Just let me know if you need a break or need to head home early.” 
• Demonstrates flexibility and understanding of potential flare-ups. 

Employers / Workplace 

• “Would a more flexible schedule or remote work option help you manage your symptoms?” 
• Invites a conversation about accommodations without assumptions. 
• “Is there a way we can adjust your responsibilities to make things more manageable?” 
• Opens the door for dialogue about specific work tasks. 
• “Feel free to take breaks as needed—let’s coordinate so your workload remains balanced.” 
• Respects the employee’s needs while addressing practical solutions. 
• “Let’s work together to find a solution that keeps you comfortable and productive.” 
• Emphasizes partnership and support rather than blame. 

Schools (Teachers, Administrators) 

• “If you need to leave class unexpectedly, just go. We’ll catch you up later.” 
• Acknowledges potential urgency for restroom breaks and reduces embarrassment. 
• “Would it help if we provide extra time for assignments when you have flare-ups?” 
• Recognises that health can impact academic deadlines. 
• “How can we make sure you’re comfortable and safe during school events or field trips?” 
• Proactive approach to inclusive planning. 
• “Feel free to let me or the counselor know if you need additional support or a quiet space.” 
• Demonstrates openness and accessibility.