Understanding Your Role

If you are a healthcare professional

If you possess any kind of license, or ​work in the healthcare field, we ask that ​you do not disclose that to your mentee ​or support group members, as that ​opens the door for them to ask medical ​or mental health questions which you ​are NOT permitted to answer

Expectations & Requirements

As an IBD peer supporter, your commitment and availability are essential to the ​success of our programs. Here's what we request of you:

Time Commitment

• We ask for a minimum commitment of 3-5 hours a month. This includes time ​spent in one-on-one mentoring sessions, facilitating support group meetings, ​and any necessary preparation or follow-up.
  

Duration of Commitment

• We ask that supporters commit to at least 18 months of volunteering. This ​helps ensure continuity and allows you to build meaningful relationships with ​your mentees.
  

Scheduling

• Reoccurring support group times and mentorship meetings can be scheduled ​to work with your calendar. We strive to accommodate your availability while ​also meeting the needs of those seeking support.
  

Flexibility and Communication

• We understand that flare-ups, emergencies, and life events can happen ​unexpectedly. If you need to take a step back for any reason, you can do so at ​any time. We simply ask that you give us notice, so we can support you and ​aid in the transition, ensuring that those seeking support continue to receive ​the assistance they need.
  

Supporter Code of Conduct

The purpose of the Code of Conduct is to outline expectations for ​personal conduct of Crohn’s & Colitis Foundation support group ​facilitators. This Code of Conduct sets expectations for how we ​(both volunteers and staff) work together and treat each other. ​Support group facilitators are asked to conduct themselves ​according to these expectations when acting as a Foundation ​volunteer and should adhere to all applicable federal, state, and ​municipal laws.

Support group facilitators and Power of Two mentors should ​refrain from such conduct as listed below

Support Group facilitators and Power of Two mentors should ​refrain from such conduct listed below as it relates to the ​Foundation:

These guidelines are in the app visible to all ​community members

At any time, if you come across someone ​who is not following the community ​guidelines please reach out to the Power of ​Two Admin, Cat.

Appropriate Referrals

Do Not Give Medical Advice, Treatment Information, or Make ​Inappropriate Referrals

• If someone you are supporting asks for medical advice or ​information about treatments, it's important to remember that ​neither you nor the group members are legally or ethically permitted ​to provide such information. Only licensed healthcare professionals ​can offer medical or mental health services.
  

Purpose of Support Spaces

• The support spaces are designed for emotional, social, ​educational, and esteem support related to living with IBD. They ​are not a substitute for professional medical advice, diagnosis, or ​treatment.
  

Referring Members for Appropriate Support

• If a member requires a different kind of support than what is ​provided in the group, such as medical, psychological, or ​specialized advice, it is crucial to refer them to the appropriate ​resources. Encourage members to consult their healthcare team ​for medical concerns or the IBD Help Center for comprehensive ​information and support.
  

Contact Us: In cases where further guidance is needed, refer members ​to the appropriate channels or contact me for additional support and ​direction. Ensuring that members receive accurate and professional ​guidance is essential for their health and well-being.

As a peer mentor, your role is to provide support and guidance based ​on your experiences and knowledge. However, it’s important to ​recognize that you’re not expected to have all the answers. For ​situations where the mentee would benefit from professional expertise ​or specialized support beyond your scope, making timely and ​appropriate referrals is crucial.

The ONLY Appropriate Referrals Are:

IBD Help Center:

For comprehensive information about IBD, treatment options, and ​general support resources. They offer valuable resources and can ​answer a wide range of questions related to IBD.

Support Staff: Elizabeth & Cat:

Please reach out to them with any concerns you may have at any time. ​You can reach them at eyeackle@crohnscolitisfoundation.org and ​powerof2@crohnscolitisfoundation.org.

Their Healthcare Team:

For personalized medical advice, treatment decisions, and detailed ​discussions about symptoms, medications, or surgical options. The ​healthcare team is best equipped to provide tailored advice based on ​the mentee’s medical history and current condition.

Support Groups / Power of Two:

We often refer to one another. If you think someone can benefit from ​either program, encourage them to check it out.

Empathize:

Acknowledge and validate the persons feelings and experiences. Show ​that you understand their concerns and are supportive of their situation.

Share:

Offer a relevant personal experience or insight that relates to their ​concern. This can provide perspective and make the person feel ​understood and less alone.

Refer:

Direct the person to appropriate resources or parties that can offer ​expert guidance or additional support. This ensures they get the ​professional help or information they need to make informed decisions.

Medical Emergencies or

Severe Symptoms

New or Worsening Symptoms

Medication Changes

or Side Effects

Psychosocial Stress or

Mental Health Concerns

**FOR MENTAL HEALTH EMERGENCIES, REFER TO THIS GUIDELINE

Complex Medical Questions

Financial or Social Service Issues

Seeking an IBD Specialist

Role Playing

Mentee:

“My diarrhea and stomach pain have gotten so much worse. I don’t think ​my biologic is working anymore. Should I just come off of it?”

Sample Response:

“I am really sorry to hear that your diarrhea got worse. That sounds ​really tough. When I experienced my last flare up, I found it helpful to ​talk to my doctor about it. They were able to adjust my treatment plan ​and helped me get it under control. Have you considered reaching out to ​your healthcare provider to talk about this?”

Why it is effective:

• Empathy and Validation: It acknowledges the persons distress and ​validates their feelings, which helps build trust and shows ​understanding.
  
• Personal Experience: Sharing a personal anecdote makes the advice ​more relatable and demonstrates that the mentor understands what ​the mentee is going through.
• Encouragement to Consult Professionals: It emphasizes the ​importance of professional medical advice, steering the person away ​from making treatment decisions without expert input.
• Reassurance and Support: By highlighting that treatment ​adjustments are a normal part of managing IBD, it reassures the ​mentee that seeking help is a proactive and appropriate step.
• Actionable Advice: It provides a clear next step for the person—​contacting their healthcare provider—which helps in moving forward ​constructively.
  

Mentee:

“I’ve been feeling so tired this week and I can barely make it through the ​work day. I’ve been running to the bathroom a lot more and there has ​been blood in my stool again. Do you think I should be worried?”

Sample Response:

“I am so sorry you're experiencing these symptoms. Having an increase ​in fatigue and seeing blood can be worrisome and really frustrating to ​deal with. When my IBD gets worse, I try to send my doctor a message. ​So many different things can cause these symptoms and it’s really ​important to get a medical opinion to understand what’s going on and ​what steps to take next”

Why it is effective:

• Empathy and Understanding: It acknowledges the person’s ​discomfort and concerns, showing empathy and validating their ​experience.
  
• Relatable Experience: Sharing a personal experience makes the ​response more relatable and reassures the person that they’re not ​alone in facing such challenges.
  
• Encouragement to Seek Professional Help: It underscores the ​importance of consulting a healthcare provider rather than self-​diagnosing or assuming the worst, ensuring the person receives ​accurate medical advice.
  
• Practical Guidance: It provides actionable advice, such as tracking ​symptoms and contacting a healthcare provider, which helps the ​person take proactive steps toward managing their condition.
  
• Reassurance: By emphasizing that these symptoms can be managed ​with professional help, the response reduces anxiety and encourages ​the mentee to seek the support they need.
  

Mentee:

“I want to start exercising more but I’m still recovering from surgery. Do ​you think running, pilates or swimming is better for people with an ​ostomy?”

Sample Response:

“Exercise is a great way to relieve stress and take control of your health. ​I’ve found that different types of exercise work better at different times ​depending on how i'm feeling. When I was recovering from surgery I ​asked my doctor if they could refer me to a physical therapist to create a ​safe exercise plan that suited my needs. You might want to consider ​checking in with them to make sure you’re being safe.”

Why it is effective:

• Encouraging and Positive: It starts with positive reinforcement ​about the benefits of exercise, which helps motivate the person and ​acknowledges their initiative.
  
• Personal Experience: Sharing a personal experience adds relatability ​and shows the person that others have navigated similar situations ​successfully.
  
• Informative Advice: It explains the potential benefits and drawbacks ​of different types of exercise for someone with an ostomy, providing ​useful information to guide their decision-making.
  
• Professional Guidance: Emphasizing the importance of consulting a ​healthcare provider or physical therapist ensures that the person ​receives expert advice tailored to their specific needs, enhancing ​their safety and effectiveness of the exercise plan.
  
• Safety First: By advising consultation with a professional, it ​underscores the importance of safety and personalized care during ​the recovery phase, which is crucial for avoiding complications.
  

Mentee:

“My doctor suggested that I get surgery for my Crohn’s disease. Things ​have been really bad and I’ve already failed 3 medications. Do you think I ​should go through with it?”

Sample Response:

“Surgery is a really big decision, and it’s normal to feel overwhelmed and ​confused about what to do. I am sure you have a lot of questions, and ​there is always room to talk about it in this space. We also have support ​services such as the Power of Two and specialized support groups ​where you can connect with patients who have been there. If you have ​more questions the IBD Help Center alongside your healthcare team can ​give you the detailed information you need to make an informed choice.”

Why it is effective:

• Empathy and Validation: It acknowledges the difficulty of the ​decision and validates the person’s feelings, showing that their ​concerns are understandable.
  
• Encouragement to Seek Information: It emphasizes the importance ​of gathering detailed information from healthcare professionals and ​support resources, which helps the mentee make a well-informed ​decision.
  
• Support Resources: Mentioning specific support services and groups ​provides actionable options for the person to connect with others ​and gain insights from their experiences, which can be reassuring ​and informative.
  
• Professional Guidance: Recommending consultation with the ​healthcare team and the IBD Help Center ensures that the person ​receives expert advice tailored to their unique situation.
  
• Empowerment: By encouraging the person to explore all available ​resources and seek support, the response empowers them to make a ​decision that feels right for them.
  

Mentee:

“I read about this new diet that is supposed to help IBD. Do you think I ​should try it? Have you been on it?”

Sample Response:

“The food you eat can play a role in managing your IBD but it’s different ​for everyone. My experience with diet has been [insert here].*

Have you seen the Crohn’s & Colitis Foundation’s Gut Friendly Recipe ​Guide? They also have a great website dedicated to nutrition with IBD.”

*you can share what diet you are on, and your trigger foods, but you can ​not prescribe meal plans or give detailed advice

Why it is effective:

• Personal Experience: Sharing your own dietary experience adds a ​personal touch and helps the person understand that others with IBD ​navigate similar choices.
  
• Resource Recommendations: Providing specific resources like the ​Crohn’s & Colitis Foundation’s guides gives the person reliable ​sources for further information and practical support.
  
• Empowerment and Support: By acknowledging that dietary ​responses can vary and encouraging the person to explore options, ​the response empowers them to make informed decisions.
  

Skills & Tools for Effective ​Mentoring

Active Listening Techniques

Key things to remember:

In a support group setting or one-on-one mentoring, asking effective ​questions can facilitate meaningful conversation and understanding. ​There are different types of questions you can use, each serving a ​specific purpose:

Open-Ended Questions

Open-ended questions encourage respondents to elaborate on their ​thoughts, feelings, and experiences. These questions cannot be ​answered with a simple "yes" or "no," allowing for richer dialogue and a ​deeper understanding of the respondent's point of view. Use open-​ended questions to explore topics more fully and gain insight into the ​challenges faced by your mentees.

Examples:

• "Can you tell me more about how you’ve been managing your ​symptoms lately?"
  
• "What have you found to be the most challenging aspect of living ​with IBD?"
  
• "How do you typically cope with flare-ups when they occur?"
  

Probing Questions

Probing questions are used to delve deeper into specific topics or ​issues. They help uncover more details and gain a better understanding ​of a mentee's situation, thoughts, and feelings. Probing questions are ​often follow-ups to open-ended questions and can help clarify or ​expand on responses.

Examples:

• "How has your social life been impacted by IBD?"
  
• "Can you describe a time you felt well-supported by your healthcare ​team?"
  

Closed Questions

Closed questions are useful for gathering specific information or ​confirming details. These questions usually elicit a short, direct answer, ​often "yes" or "no." While they are less exploratory, they are valuable for ​clarifying facts or understanding specific aspects of a mentee's situation.

Examples:

• "Do you feel comfortable discussing your symptoms with your ​healthcare provider?"
  
• "Have you been keeping track of your flare-ups?"
  
• "Did you speak to your doctor about that?"
  

By using a combination of open-ended, probing, and closed questions, ​you can facilitate productive and supportive conversations. This ​approach helps people feel heard and understood while also providing ​the opportunity to explore and address their concerns more ​comprehensively.

Problem-solving skills will come into play when dealing with individual or group problems

Making encouraging versus dismissive statements lets your members ​know they are supported and being understood. Try acknowledging ​members' struggles, being reassuring, and thanking them for sharing ​their issues.

Encouraging vs dismissive statements:

Respect Autonomy:

EVERYONE has the right to make their OWN decisions: Always respect the ​person’s right to choose their own path. Avoid making decisions for them, and ​instead, support them in making informed choices.

Empower Decision Making:

NEVER make a decision on behalf of anyone, allow them to make their OWN ​CHOICE: Empowering mentees involves providing information and guidance ​without taking over their decision-making process. Encourage them to weigh their ​options and decide what is best for them.

Encourage Leaning on Other Supports:

Encourage those you are supporting to reach out to family, friends, doctors, and ​other support systems. It's important for them to have a network of support ​beyond the mentoring relationship.

Build Up Their Esteem:

When they are handling things well without support, let them know and ​encourage them: Positive reinforcement helps people recognize their strengths ​and build confidence.

Set Boundaries:

Do NOT be available all the time, and hold strong boundaries to protect the ​relationship: While being supportive is crucial, it's equally important to maintain ​boundaries. This prevents burnout and ensures the relationship remains healthy ​and sustainable.

Fostering a culturally sensitive and diverse environment is essential in ​any support setting. Here's how you can practice and promote these ​values:

Educate Yourself

• Continual Learning: Stay informed about different cultures, ​backgrounds, and experiences. This ongoing education helps you ​understand and appreciate the diversity within your group and ​enhances your ability to support others effectively.
  

Respect Cultural Differences

• Value Diversity: Recognize and honor the cultural differences that ​members of your group bring. This includes being aware of and ​respectful towards different customs, traditions, communication ​styles, and values.
  

Avoid Making Assumptions

• Do not assume that everyone from a particular cultural background ​shares the same beliefs, values, or experiences. Approach each ​person as an individual and seek to understand their unique ​perspective.
  

Ask Questions Respectfully

• When you're unsure or curious about cultural practices or ​viewpoints, ask questions in a respectful and open-minded manner. ​This shows respect for the other person’s experiences and a ​willingness to learn.
  

Use Inclusive Language

• Ensure that your language is inclusive and free from stereotypes or ​discriminatory undertones. Avoid generalizations and be conscious ​of using terms that are respectful and representative of all ​individuals.
  

Reflect on Your Own Cultural Bias

• Regularly reflect on your own cultural biases and how they may ​impact your interactions. Acknowledging and addressing these ​biases is crucial for fostering a genuinely inclusive environment.
  

Definition:

Microaggressions are subtle, often unintentional verbal or non-verbal ​behaviors that convey hostility, disrespect, or negative assumptions ​toward a person’s identity, background, or marginalized group.

Examples of Microaggressions

Racial or Ethnic: “Where are you really from”

Gender: “You’re too pretty to be good at your job”

Sexual Orientation: “Who’s the man and who’s the woman in the ​relationship?”

Disability: “You don’t look sick”

Age: “You’re pretty good for someone your age”

Religion: “Isn’t that a bit much to follow such strict rules?”

Common IBD Macroaggressions

Unsolicited Medical Advice

“You should just try doing yoga”

Questioning Medication Choices

“Why are you taking a biologic instead of prednisone?”

Implying Emotional Weakness

“Well maybe if you managed your stress better you wouldn’t be in a ​flare up”

Assumptions about Diet

“Well maybe if you tried cutting out gluten your diarrhea would be ​better”

Minimizing of Symptoms

Comments like, "You're lucky it's not worse"

What to Do if a Microaggression Occurs

Stay Calm

• Take a deep breath and maintain your composure. Responding ​calmly helps you manage the situation more effectively and keeps ​the conversation focused.
  

Acknowledge the Impact

• Recognize and address how the microaggression affects you. It’s ​okay to express that the comment or behavior was hurtful or ​inappropriate.
  

Educate

• Provide information to the person who made the microaggression. ​Explain why their comment or behavior is problematic and offer ​guidance on how to be more respectful.

Ask Questions

• Engage in a constructive dialogue by asking questions. For ​example, “What do you mean by that comment?” or “Could you ​clarify your intention behind what you said?”

Move Forward

• After addressing the microaggression, focus on moving forward. ​Reinforce positive interactions and, if necessary, establish ​boundaries to prevent similar issues in the future.

Reminder:

• Addressing microaggressions constructively can lead to greater ​understanding and respect within diverse groups. Your ​experiences and feelings are valid, and advocating for respectful ​interactions benefits everyone involved.
  
• If anything ever gets out of hand and you are unsure of how to ​handle it, please reach out to the foundation support staff.

Definition:

Macroaggressions are overt and explicit forms of discrimination, ​prejudice, or hostility based on race, ethnicity, gender, sexuality, religion, ​or other characteristics. Unlike microaggressions, which are subtle and ​often unintentional, macroaggressions are direct and deliberate acts of ​bias.

What to Do if a Macroaggression Occurs

Hang Up the Call

• If the macroaggression occurs during a virtual or phone interaction, ​end the call immediately. Prioritize your safety and well-being.
  

Alert Support Staff ASAP

• Report the incident to the relevant support staff as soon as possible. ​Provide them with details about the incident so they can take ​appropriate action.
  

Take Care of Yourself

• After the incident, take steps to care for your mental and emotional ​well-being. Seek support from friends, counselors, or and foundation ​support staff.
  

Reminder:

• Macroaggressions are NOT tolerated in support spaces. Your safety ​and respect are top priorities.
  

Living with Inflammatory Bowel Disease (IBD) can be traumatic. It's ​essential to provide trauma-informed support to ensure a safe and ​supportive environment for those affected.

Understanding the Impact of Trauma

• Prevalence of Trauma: Approximately 25% of people with IBD report ​experiencing post-traumatic stress symptoms (Bugwadia et al., ​2024).
  
• Nature of Trauma: Hospitalizations, flare-ups, painful symptoms, and ​major surgeries can all be traumatic. Unlike other forms of trauma, ​medical trauma from IBD cannot be physically distanced from, as the ​source is ongoing.
  

Signs to Look Out For

• Intrusive Memories: Flashbacks or recurring thoughts about ​traumatic medical experiences.
• Avoidance: Avoiding necessary medical follow-ups or discussing the ​condition.
• Difficulty Coping & Increased Anxiety: Struggling with day-to-day ​management and feeling heightened anxiety.

Creating a Safe & Supportive Space

Be AWARE of Your OWN Feelings:

If you live with IBD, be mindful of your emotional responses, especially ​when listening to others share their experiences. Recognizing your ​triggers is crucial for maintaining a supportive environment.

Respect Boundaries:

Do not push anyone to discuss topics they are not ready to address. It’s ​important to respect each individual’s readiness and comfort level.

Use Trigger Warnings:

Encourage the use of trigger warnings before discussing potentially ​distressing topics. Remind members that they can step out or take a ​break if they feel overwhelmed.

Responding to Triggered Individuals

1. Assess the Situation:
   
• Determine if the support group can handle the situation or if the ​person needs further support, possibly outside the group setting.
  
2. Encourage a Pause:
   
• Suggest that the person take a pause and engage in a simple ​breathing exercise to calm down.
  
3. Redirect Back to the Original Speaker:
   
• Once the triggered individual has had a moment to pause, invite ​the original speaker to continue their thoughts.
  
4. Invite Input:
   
• Allow group members to share their thoughts if they feel ​comfortable, but ensure no one feels pressured to speak.
  

Trauma-Informed Language

All self disclosure should be:

+

Self-disclosure can enhance peer support by fostering connection and ​empathy. When sharing personal experiences, it's crucial to ensure that ​your disclosure is supportive and appropriate. Here’s how to navigate ​self-disclosure effectively in the context of IBD:

Key Principles for Self-Disclosure

Non-Scary Disclosure:

• Focus on Facts: Share the factual aspects of your experience rather ​than focusing on fears or distressing details. This helps to maintain a ​constructive and supportive environment.
  
• Highlight Coping Strategies: Emphasize how you managed and ​overcame the challenging aspects of your experience. This can ​provide practical advice and encouragement to your mentee.
  
• Moderate Emotion: Express your emotions in a balanced way that ​doesn’t overwhelm your mentee. Your goal is to be relatable and ​supportive without adding to their stress.
  

Non-Dominating Disclosure:

• Use “I” Statements: Frame your experiences as your own by using ​“I” statements (e.g., “I found it challenging when…”). This clarifies ​that you are sharing your personal perspective and not imposing it ​on others.
  
• Ask for Permission: Before sharing a personal story, ask, “Is it okay if ​I share something that happened to me?” This respects the mentee’s ​boundaries and ensures they are comfortable with the disclosure.
  
• Refocus on the Mentee: After sharing, gently steer the conversation ​back to the mentee. Ask questions or offer support related to their ​situation, ensuring that the focus remains on their needs and ​experiences.
  

Applying Self-Disclosure Effectively

• Consider the Mentee’s Comfort: Be aware of the mentee’s emotional ​state and readiness to hear about your experiences. If they seem ​uncomfortable, it’s okay to withhold disclosure.
  
• Be Concise and Relevant: Share only what is necessary and relevant ​to the conversation. Avoid lengthy or detailed disclosures that might ​overshadow the mentee’s experience.
  
• Maintain Professional Boundaries: Keep the focus on supporting the ​mentee’s journey. Your disclosure should serve their needs and not ​be about seeking validation or sharing for the sake of sharing.
  

By following these guidelines, you can use self-disclosure to strengthen ​your support, offering valuable insights and fostering a deeper ​connection with your mentee.

• Step by step guide ​to navigating when a ​patient is in crisis

• When in doubt, call ​support staff
  

• Mindfulness ​exercises are ​practical tools ​someone can use ​every day

• These exercises are ​great for grounding ​and can be ​incorporated into ​every meeting
  

• Good conversation ​starters to use when you ​don’t know what to say

• Icebreakers catered ​towards different age ​groups, experiences and ​more.
  

Navigating the Foundation’s ​Website

Crohn’s & Colitis Foundation Tools & Resources

The Foundation has many free tools and resources for patients, caregivers, and healthcare providers. The following section will walk you through the website.

www.crohnscolitisfoundation.org

First, let’s take a look at the top bar

About Us

This is where you will find the Foundation’s Mission and Core Values, Strategic Plan, Board Members, and more.

Local Resources

Patients can search for chapters, support groups, and events

Find a Support Group

There are many places on the Foundation website that will take you to the Find a Support Group page

Find A Support Group

This page is in the process of an upgrade. It will slowly begin to look different and become MUCH more user friendly

Find A Support Group

The easiest way to find a group is to search by state, chapter, or category. Since most support groups are virtual, searching by zip code will yield few results.

Search by state

Search by category

Search by chapter

News & Events

Our Impact

Now, the 2nd *******

Patients and Caregivers

This is where you will find resources for you, the group, and its members

In the 1st column, you will find information on Crohn’s disease & ulcerative colitis, the IBD Medication Guide, and Gut Friendly Recipes

Links in the 2nd column will take you to the IBD Help Center, youth & young adult resources, and support services

The 3rd column contains MyIBD Learning, the IBDVisable Blog, and other resources

Research

Learn about the Foundation’s current research initiatives and find out how you can participate

Professionals

Memberships, conferences, education, and resources for Healthcare Professionals

Get Involved

Find local fundraising events, sign up for advocacy efforts, make donations, and see all of the Foundation’s volunteer opportunities

Life with IBD Conversation Starters

Conversation Starters

Coping Strategies

• What are some things you’ve found helpful for coping with the daily ​challenges of IBD?
• What coping skills do you use when you are going through a flare ​up?

Finding Support

• Who do you usually reach out to for support with IBD and what kind ​of support do they offer?
  
• Have you found any support groups or resources that have been ​especially beneficial for you?

How to Ask for Support

• How do you go about letting others know when you need help with ​your IBD?
  
• What makes it easier or harder for you to ask for support from ​friends, family or healthcare providers?
  

Mindfulness Exercises

• Have you tried mindfulness or relaxation exercises to help with IBD? ​How did they work for you?
  

Acceptance & Resilience

• What has been the most challenging aspect of accepting your IBD, ​and how have you worked through it?
  
• In what ways has IBD affected your sense of self or identity?

Managing Flare Ups

• What are some ways you've found effective in providing emotional ​and practical support?
• How do you balance being supportive with encouraging ​independence?

Setting Boundaries

• How do you set boundaries to protect your health while managing ​your IBD?
  
• Have you faced any difficulties' with setting boundaries and how ​have you navigated those situations?
  

Conversation Starters

Disclosure in the Workplace

• What are some of the challenges you’ve faced when deciding ​whether to disclose your condition to your colleagues or employer?
  
• Have you had any experience with disclosing your IBD at work? ​What factors influenced your decision to share or not share?

Managing Symptoms at Work

• How do your IBD symptoms impact the way you show up at work?
• Have you found any strategies to help you manage your symptoms ​during the work day?
  

Accommodations & Workplace Rights

• What accommodations have you requested or received at work to ​help manage your IBD?
  
• Have you needed to make any changes to your accommodations ​over time? If so how did you go about it?

Career Planning & Long Term Goals

• How has IBD influenced your career goals and long term plans?
• What steps are you taking to align your career aspirations with your ​health needs?
  

Balancing Work with Appointments

• How do you manage scheduling and balancing your work ​responsibilities with medical appointments?
  
• Do you feel comfortable speaking to your supervisor about ​switching around your schedule to accommodate appointments?

Navigating Flare-Ups at Work

• What communication strategies have you found effective when you ​need to take time off or adjust your workload due to a flareup?

Conversation Starters

Symptoms during Pregnancy

• How have your IBD symptoms changed since becoming pregnant?
• What symptoms havve been the most difficult to manage during ​your pregnancy, and what strategies ahve you used to cope with ​them?
• Has your healthcare team had to make any adjustments to your ​treatment plan due to pregnancy?

Support Systems

• Who has been most supportive during your pregnancy with IBD, and ​how have they helped you manage your condition?
  
• Who do you expect will be a part of your support system after the ​baby arrives?

Postpartum Considerations

• How are you preparing for the transition to postpartum care for both ​yourself and your baby considering your IBD?
  

Career Planning & Long Term Goals

• How has IBD influenced your career goals and long term plans?
• What steps are you taking to align your career aspirations with your ​health needs?
  

Navigating Medical Appointments

• How are you balancing medical appointments for both your IBD and ​your pregnancy? How is your healthcare team collaborating?

Questions for your OBGYN

• How have you approached discussing IBD with your OBGYN?
• What specific questions or concerns do you have for your OBGYN ​regarding your IBD and pregnancy?
  

Conversation Starters

Communication Strategies

• How do you communicate about your IBD with your partner?
• How do you approach conversations about your IBD when you’re ​feeling overwhelmed or uncertain?
• Are there any specific tools or techniques you’ve used to help your ​loved one understand your needs and challenges related to IBD?

Intimacy & Physical Health

• How has IBD affected your experience of intimacy and have you ​been able to make adjustments?
  
• How do you navigate conversations about intimacy and physical ​health with your partner, considering your IBD?

Planning & Future Considerations

• How do you incorporate your IBD into your long term plans and ​goals?
  
• What considerations have you made in managing your condition in ​future stages of life, such as starting a family, moving to a new place ​or making a career change?

Boundaries and Self Care

• What boundaries have you set to protect your well-being while ​managing IBD?
• How do you prioritize self care and managing your IBD without ​being guilty or worried about how it might affect your relationship?

Educating Partners

• What are the most important things you want your partner to ​understand about living with IBD?
• What challenges have you encountered in getting your partner to ​understand and support your needs, and how have you overcome ​them?
  

Conversation Starters

Disclosure Timing

• When did you decide to disclose your IBD to your partner?
• How do you determine the right time to share information about ​your IBD with someone new?

How to Disclose

• What key points do you include when explaining your IBD to ensure ​that the other person understands your needs and limitations?
  
• How do you handle your emotions depending on how the other ​person reacts?

Navigating Intimacy

• How does having IBD impact your intimate life?
• How do you approach discussions about intimacy with your partner ​when managing your IBD symptoms?

Accessible Date Ideas

• How do you plan dates or activities to ensure that they are both dun ​and accessible given your IBD?
• How do you handle eating out with dietary restrictions and how do ​you advocate for yourself at restraunts?

Communicating IBD Limitations

• How do you communicate your IBD limitations to the person you are ​dating in a way that helps them understand and support you?

Conversation Starters

Managing Symptoms at School

• What strategies have you found helpful for managing your IBD ​symptoms during the school day?
• How do you handle flare-ups or symptoms while you’re in class or ​participating in school activities?
• Are there any specific routines or adjustments that have helped you ​stay on top of your health while attending school?

Academic Accommodations

• Have you explored or requested any academic accommodations to ​help manage your IBD? What accommodations have been most ​useful for you?
• How did you go about requesting academic accommodations, and ​what was the process like?
• If you do not have accommodations, do you think you could benefit ​from them?

Navigating Absences

• How do you handle absences from school due to IBD symptoms or ​medical appointments?
• What strategies have you found effective for catching up on missed ​work or assignments after being absent?
• How do you communicate with your teachers or professors about ​your absences and ensure you’re staying on track with your ​coursework?

Peer Relationships

• How do you explain your IBD to your peers, and what has been their ​reaction?
• What challenges have you faced in maintaining friendships or peer ​relationships while managing your condition?
• How do you navigate social situations with peers when your IBD ​symptoms are acting up?
  

How to Use Campus Resources

• What campus resources have you found helpful in managing your ​IBD while attending school?
• How do you make the most of resources like counseling services, ​health centers, or academic support offices?