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Get the Facts. There’s more to IBD than you know. Join The Unbeatables, the IBD Unmasked team of superheroes in raising awareness of IBD.

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Unmasking
IBD

Learn more about the disease
and its impact.

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Becoming a
Superhero Sidekick

Does someone you know have IBD?

Get tips on how to help your loved one adapt to the challenges of IBD.

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Jumpstart the Conversation

A strong support system can make all the difference in being able to manage life with IBD. From a patient-doctor relationship to reliable, engaged, and trustworthy family or friends, these are the people who can make all the difference in finding a path toward better disease management.

Because of the complex and sometimes sensitive nature of IBD, having open conversations might feel challenging or overwhelming. The information and tips on this page may help support your discussions, leaving you more empowered. The resources can also help anyone who wants to better support a loved one, family member or a friend who lives with IBD.

Living with UC or CD

Good communication between doctors and patients is critical to living well with IBD. Learn more tips and tools to help you get the most out of conversations with your doctor.

1. Open Conversations

Conversations about your ulcerative colitis or Crohn’s disease symptoms and their impact on your health and well-being can be daunting to have with a doctor, regardless of how long you have known them.

It’s perfectly natural to need some time to become comfortable with sharing such personal information, but opening up to a doctor is in your own best interest, because it helps them get a better sense of how you’re feeling – from physical symptoms to other concerns or stresses you’re coping with. This allows you and your doctor to determine the best disease management plan.

Here are some recommendations for people living with IBD who may need a little help getting comfortable and finding the words to talk to a doctor:

  • Keep a journal. Writing down what you experience and when - the good and the bad - will help give a complete picture of how your disease affects all aspects of your life, and may help you remember important details.
  • Practice a conversation with a doctor. Writing down and even speaking aloud your questions or concerns in advance can help you feel more at ease when you meet face-to-face with a doctor.
  • Keep a running list of “conversation starters.” From questions about symptoms, medication, or even medical bills, jotting down questions or concerns ahead of time may help you feel less stressed in the moment.
  • Remember that a doctor should want to fully understand what you are feeling, both emotionally and physically. You can – and should be – completely open and honest about your feelings or concerns, no matter what. Whether you need more information about something, or if you feel you could be doing even better than you currently are – let it be known.
2. Feeling Prepared (for Your Next Appointment)

You may not always have a list of specific questions for your doctor. And that’s perfectly fine! There are still things you can do to help feel ready for appointments and get the most out of your time:

  • Write it down. Sometimes the best thoughts or ideas strike us randomly – and then slip our mind. Have a phone or notebook handy when possible and jot down health-related thoughts or questions.
  • “Conversation cues.” Coming up with a few general cues in advance can help you and your doctor stay on track, and let you know that your doctor understands what you are telling them.
    • At the start of your appointment, find out what your doctor’s intentions are by asking: “Are there any new or specific things we’re going to go over today?”
    • Ask follow-up questions to anything you share about yourself, such as: “What does that sound like to you?” or “What do you think about that?”
    • When the appointment is wrapping up, ask: “It feels like we covered a lot today. Is there anything else I should know before I go or keep in mind for my next visit?”
3. Communicating What You're Feeling

As the person living with ulcerative colitis or Crohn’s disease, you are the priority, and you should feel that way when meeting with a doctor. These tips can help facilitate shared decision-making and allow you to take a more proactive role in managing your disease in the best way for you.

  • Don’t just list your physical symptoms. Explain how you have been feeling and the impact symptoms may or may not have on your life. This will give your doctor a complete picture.
  • Ask for feedback during your appointments to understand your doctor’s thoughts about your progression, and whether there is anything else to consider as part of your treatment plan.
  • Always ask “Why?” From gaining a clearer understanding of why you feel the way you do or learning more about your options, the more you know, the better. It’s a doctor’s job to make appropriate disease management recommendations based on your personal medical history, symptoms, needs, and so on – but you have every right to ask questions until you fully understand your options.
  • Ask how a particular test or procedure will change your management plan. Make sure you know why a test or procedure is being performed, and how the results will affect the next steps in your management.
  • Advocate for YOU. If you feel that a doctor is not listening or does not understand what you are going through, speak up. Ask if there is a better way for you to communicate what you are going through, or if you might be able to find more time to talk during a follow-up appointment. You may want to have a friend or family member accompany you to remind you of any additional issues that you want to raise and help remember the information you are given. It may also be possible to speak to a nurse or nurse practitioner within the clinic about your experiences and management plan.

quoteThe cornerstone of a successful consultation between a patient with IBD and their doctor is an honest and open conversation to ensure that the doctor truly understands how you are feeling – both physically and emotionally,quote says Dr. James Lindsay. quoteThis understanding can help direct the most appropriate disease management plan for your disease. It is also important to remember that there are a range of patient support communities and tools to guide people living with ulcerative colitis or Crohn’s disease along with their family and friends. Alongside the correct care, this support can help you live life to the fullest and overcome any feeling of isolation that you may have.quote

Dr. James Lindsay is a consultant and clinical lead in Inflammatory Bowel Disease at The Royal London Hospital, Barts Health National Health Service Trust. He is an international thought leader in IBD.

Let Your Inner Superhero Be Heard

Brave. Fearless. Determined. Courageous.

No matter your superhero type, these are a few of the many admirable traits people with ulcerative colitis or Crohn’s disease exhibit.

You are unique with an individual personality, set of needs, and symptoms. You should approach your health in a way that makes you feel best – leveraging your own specific strengths to your advantage.

Read on to learn more about making the most of your amazing self and distinctive abilities!

“Electric Extrovert”
You take on every challenge with a smile. You inject energy and enthusiasm into anything you do with friends, family or coworkers. You know laughter is the best medicine, always look on the bright side and you try to lift the spirits of those around you. You thrive when you’re surrounded by your team and are comfortable opening up to any of them. With your talkative and outgoing nature, others feel just as comfortable when they’re around you.

“Mighty Professor”
You’re the master of your domain. You’re a planner. You’re someone who stays calm, cool and collected. You take your time and consider every angle before launching an attack. Your persistency is unwavering. Even if something doesn’t work, you don’t give up without a fight. With your trusty utility belt, you’re ready for anything. You’re dependable and responsible, and thrive on organization and efficiency.

“Captain Compassion”
You’re compassionate and warm, and others admire your straightforward nature. Your kindness is contagious, and people gravitate towards you. Others turn to you for your sympathetic and considerate nature. You’re an asset to any group.

“Optimist Prime”
You are known for your curious, insightful, and original qualities. You like to explore and learn wherever you go. No goal is out of reach. Others admire your intellectual curiosity, and your imagination leads to fantastic ideas. People close to you know that you always find the alternative to any situation. You’re willing to try new things and take on any challenge that comes your way.

Create Your Own Superhero

Family/Friend Guide: Becoming a CD/UC Superhero Sidekick

Whether someone you know has had ulcerative colitis or Crohn’s disease for years, or was recently diagnosed, it can be challenging to find the most effective way to support them through ups and downs. Although there is no perfect approach, there are some general guidelines that might help. Consider the following tips next time you find yourself struggling to find the right words – or actions.

This guide has been developed with insights and feedback from IBD Unmasked contributors Emiliano Bezek, Michael Seres, Seb Tucknott and Chantel Wicks. Read more about them here.

1. Where to Start

If your family member or friend has been diagnosed with ulcerative colitis or Crohn’s disease recently, it’s important to keep in mind that they could be nervous, anxious and afraid about the changes they may have to make in their lives. While this will be a learning process for the both of you, there are ways you can prepare yourself to be the most supportive companion possible in helping them meet the challenges they are facing. To learn more about what the person you are supporting might be going through, Get the Facts.

Ulcerative colitis and Crohn’s disease are often seen as “invisible” illnesses. It is crucial to be aware that even if someone living with IBD looks good on the outside, they may still be feeling unwell. Though the severity of IBD ranges, many people living with ulcerative colitis and Crohn’s disease are able to do the activities they enjoyed prior to diagnosis when inflammation is under control. Remember that many activities can simply be adapted in order to make them friendlier to someone’s ulcerative colitis and Crohn’s disease symptoms. For example, did you, your friends and loved ones enjoy going for walks or runs? If they’re up to it, plan a route together and just make sure that there are plenty of bathrooms included along the way.

You can also find a creative project to conquer – you’ll be working on making something together, while finding a new hobby or activity that you both find enjoyable, substituting it for other favorites that may not be appropriate when symptoms are flaring up. Taking such simple initiatives can help alleviate some of the anxiety that people living with IBD often experience.

Just remember – everyone is different, and there are a variety of ways to support people with ulcerative colitis or Crohn’s disease. The Cheerful Champion, for example, might show up with flowers and balloons when a friend isn’t feeling well, while the Zen Master would likely give his or her friend a call to ask about useful things to bring over. Neither approach is wrong. A variety of different personalities can successfully support their family and friends.

2. Adapting to Changes in Plans

For people with IBD flare-ups and symptoms can be unpredictable. It’s important to remember that symptoms can strike at any time, even if you have made plans to do something you were looking forward to. This means that, regardless of how excited others were to see that movie with you or to try that new restaurant in town, plans may have to change at the last minute.

While you may be left feeling disappointed that your plans were cancelled, know that the decision to cancel was not made lightly. People living with IBD often end up feeling guilty that they are ruining plans or inconveniencing others. When someone experiences a flare-up or symptoms, it can force them to stay in the house, in a great deal of pain and extremely exhausted, for days or even weeks on end. The best support in such situations comes from friends or family members who are flexible and understand that the person who is sick does not want to be, and that the change was not by choice. A simple reminder that it’s not your loved one’s fault goes a long way to show them that you understand.

Rather than getting upset or complaining that your family member or friend is leaving a party or social outing earlier than expected – which will likely make them feel worse – offer some support. That may mean walking them out to their car or even offering to drive them home. As another example, if you’re planning to go to the movies together, but your friend or family member’s symptoms are keeping them confined to their house, offer to pick up all the movie night essentials and enjoy a night in, together, in the comfort of their personal space.

3. Supporting Through the Tough(est) Times

While ulcerative colitis or Crohn’s disease can cause symptoms at any time, there might be times when your friend or family member really needs extra support – no matter how long it’s been since their original diagnosis. From an especially bad disease flare-up that might land a person in the hospital, to treatments not working, living with ulcerative colitis and Crohn’s disease can sometimes be a rollercoaster ride, physically and emotionally.

Whether a situation is embarrassing, exhausting, or just downright painful, having you as a reliable person that your loved ones can depend upon for anything can help ease their stress. This could involve driving them to the doctor’s office or simply being someone to talk to after an especially tough experience.

Showing compassion and understanding are essential when someone living with IBD needs to miss out on important life moments. While they may have been excited to take part in your wedding, flare-ups don’t care. It’s important to remain supportive during times like this.

Be sure to recognize that ulcerative colitis and Crohn’s disease are life-long diseases. Be aware that during the journey some friendships may change. Someone living with IBD may experience the breakdown of some friendships and the strengthening of others, as all people’s level of understanding differs. As a supporter, understand that is normal and neither you nor your friend should feel guilty.

Did you know: stressful situations may make symptoms worse and in some cases even trigger them. It’s important to remain supportive when your friend or family member needs help with something even if it seems unrelated to their disease. It might be an upcoming move, a big exam or even an issue at work, so keep in mind that a stressful situation can have more impactful consequences for people living with ulcerative colitis and Crohn’s disease – and offer your help accordingly!

It is also important to not let those you support feel as if they have done something wrong to cause their illness, like eating “bad” foods or being too stressed out. Supporters should understand that what might cause symptoms varies by individual, and you may not always know what the triggers are. Know that there are techniques that may help individuals living with IBD alleviate some of them.

Sometimes, those you are supporting will want and appreciate your support - such as driving them to appointments or listening when they talk about their experiences. Support may take on many different forms, depending on what an individual needs or prefers; it may include close friends or family, a trusted healthcare professional, or talking with others impacted by IBD. Another way to help you and your friend or family member living with IBD receive support may include finding an in-person or virtual support community to engage with, or contacting a local advocacy organization for more information on resources they offer.

Other times, a great supporter can help by getting their friend’s or family member’s mind off of what they are dealing with, which can feel like it’s taking over their life. Doing something that feels “normal” such as relaxing on the couch or taking a leisurely walk can help someone with IBD feel like they still have a sense of normalcy in their sometimes chaotic life.

4. Offering Your Perspective

While you may struggle to understand the experience of living with IBD when you haven’t been through the disease yourself, there are ways to lend support and understanding without overstepping boundaries. It’s important for people living with ulcerative colitis or Crohn’s disease to take control of how they manage their illness with the help of a doctor, and you’re able to learn along with them and support them through that plan.

Have you ever accompanied a friend or family member to a doctor’s visit? If you do join your friend or family member, it may be helpful to write out a list of the questions you’d like to ask or have them ask, and run that list by them beforehand. While there can be unexpected twists and turns at the doctor, this might help avoid an awkward situation, in which your friend or family member is embarrassed or uncomfortable with the conversation you’re engaging in with their doctor.

Some people living with IBD may prefer to attend doctor’s visits alone. One way to support your friend or family member in this situation may be to help him or her track their symptoms. Keeping a log of when certain situations occurred can be helpful to use during a visit with the doctor in order highlight specific things they’ll want to talk about.

A list of key points might also help you stay focused when sitting down to talk with the person you are supporting. When supporting someone you care about, it’s good to have a plan in place to avoid letting emotions sway the way you share your thoughts.

A supporter who takes the time to learn more about IBD and discover good resources shows someone living with IBD that they are truly committed and supportive. At the end of the day, remember that just being there to actively listen, without judgment, in order to validate feelings also goes a long way.

Embracing the Super Supporter You Truly Are

You have a unique personality, and each type of “superhero sidekick” might have ideal ways to support their loved ones with IBD. It’s important to consider not just what you think will be appreciated the most, but also how you can be your most genuine self.

The care, love and compassion you provide your friends and family members living with IBD does not go overlooked. Read on to learn more about making the most of your super self and distinctive abilities!

Description: A cheerful champion wears a cape of optimism. You consistently provide positivity and continually point out the bright side of tricky situations. People living with IBD gravitate towards your happy nature, and you are their go-to person when they are feeling down.

Sidekick Strength: You are mindful there are set backs, but there are always bigger and brighter things ahead. This keeps those around you in check. Your energy reinvigorates people living with IBD to help them maintain a fresh perspective, and your natural humor lightens those who have been weighed with burden.

Superhero Pro Tip: Be mindful of when a polite dose of reality is more appropriate than your usual ever-positive nature. Sometimes those you are supporting need a little more serious superhero strength. You can find ways to allow your optimism to shine, while still being a pillar of strength when a more upfront approach is needed.

Description: Others depend on you for your composed nature and ability to smooth over even the rockiest of situations. Your loved one with IBD relies on you for sage guidance and Zen-like calm.

Sidekick Strength: You are calm in a storm of symptoms which makes you reliable to those living with IBD. You serve as a resource in teaching those around you that it’s okay to lean on others in times of need. Continue to show your support by stepping up to provide a last minute ride to the hospital or a plan for managing meds.

Superhero Pro Tip: Don’t hold back when you have wisdom to share. Speak up and let your loved one know that you’re there to support them in any way they may need. Remember, someone living with IBD knows their own body best, so it’s important to avoid sharing medical advice. At times someone living with IBD may just need you to step back and follow their lead.

Description: Loyalty always – you stand by those you care about through thick and thin. Your loyalty knows no boundaries when it comes to supporting those that you care about, through both the good and bad times.

Sidekick Strength: Your dependability extends beyond providing comfort and defending your IBD hero. You show your devotion in your efforts to educate yourself on IBD and you let your knowledge empower those around you.

Superhero Pro Tip: Each person living with IBD has a journey of their own, so try and ensure the decisions and experience is about them. While trying to identify and empathize with the person you are supporting is key, try to avoid offering too much self-driven advice like “if I were you…,” and instead offer a simple “Have you checked something like this out?” Listening closely to his or her needs will only aid in furthering both of your strengths.

Description: For some, things are always black and white, but you see shades of gray. Your ability to view situations from multiple perspectives helps people living with IBD explore new options and outcomes.

Sidekick Strength: Your curiosity and ongoing drive to challenge the status quo is your secret weapon. When someone living with IBD is feeling lost, you’re there to break through the emotional walls and remind them that there is still hope.

Superhero Pro Tip: Be mindful when your superhero needs more support versus perspective. Sometimes people need time to absorb information and situations before moving forward. Don’t forget to be a good listener, and provide advice when the situation calls for it.

Create Your Own Superhero

DISCLAIMER

IMPORTANT NOTICE: The content on IBDunmasked.com is not, nor is it intended to be, medical consultations, diagnoses, or treatment recommendations. The content on this site is not intended to replace guidance from your healthcare providers. Always consult your healthcare providers for all medical- and health-related matters.