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Unmasking
IBD

As many as 70,000 new cases of IBD are diagnosed in the United States each year.

Learn more about the disease and its impact.

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.

The Crohn's & Colitis Foundation of America (CCFA) has proudly joined forces with Takeda and Samarium on the mission to unmask IBD.

CCFA is a non-profit, volunteer-driven organization that is dedicated to finding the cures for Crohn’s disease and ulcerative colitis and improving the lives of those with these diseases, and has been doing so for nearly 50 years. CCFA funds cutting-edge studies at major medical institutions, nurtures investigators at the early stages of their careers, and finances underdeveloped areas of IBD research. While CCFA sponsors basic and clinical research of the highest quality, they also offer a wide range of educational programs for patients and health care professionals, while providing supportive services to help people cope with these chronic intestinal diseases. These programs are supported solely through donors, grants, sponsorships, and fundraising efforts.

CCFA, in its partnership with Takeda, hopes to bring IBD further into the forefront of public awareness and to inspire superhuman strength in those that CCFA dedicates their mission towards.

Meet CCFA’s Vice President of Patient and Professional Services:

Laura Wingate

Laura D. Wingate is the CCFA’s Vice President of Patient and Professional Services, overseeing all chapter and national patient education and support programming, as well CCFA’s professional education and advocacy programs. Ms. Wingate also serves as a liaison to the CCFA National Scientific Advisory Committee and the CCFA Board of Directors. Ms. Wingate graduated from the University of Rochester with a degree in health administration, and began her career working in the medical and surgical oncology departments at Memorial Sloan Kettering Cancer Center, followed by spending eight years as the Director of Operations for the Big Apple Circus, providing trained entertainers to help in pediatric hospitals across the U.S. The opportunity to join the Crohn’s & Colitis Foundation has been the perfect intersection of Ms. Wingate’s career aspirations, education and personal desire to make a difference in patient care.

Jumpstart the Conversation

A strong support system can make all the difference. From a patient-doctor relationship to reliable, engaged, and trustworthy close 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 or a friend.

Living with CD or UC

Dr. David Rubin provides tips and tools to help you get the most out of conversations with your doctor.

Dr. David Rubin is the Chief of the Section of Gastroenterology, Hepatology and Nutrition and the Co-Director of the Digestive Diseases Center at the University of Chicago.

1. Open Conversations

Conversations about your Crohn’s disease or ulcerative colitis symptoms and their impact on your health and well-being can be daunting to have with your healthcare provider, regardless of whether you have new ones or long-established relationships with your healthcare team.

It’s perfectly natural to need some time to become comfortable with sharing such personal information, but opening up to your healthcare provider 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 stressors you’re coping with – in order to determine the best treatment plan for you.

Here are some recommendations for patients who may need a little help getting comfortable and finding the words:

  • Keep a journal. Writing down what you experience and when – the good and the bad – will help you remember important details.
  • Practice a dialogue with your doctor. Writing down and even speaking aloud your questions or concerns can help you feel more at ease when you meet face-to-face with your doctor.
  • Keep a running list of “dialogue 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 your physicians should want to hear from you – and want to hear it all. 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 each one:

  • 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 is hearing and understanding you.
    • 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 when we next talk?”
3. Communicating What You're Feeling

As the person living with CD or UC, you are the priority, and you should feel that way when meeting with your 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 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 clear understanding of why you feel the way you do or learning more about your options, the more you know, the better. It’s your 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 will change your management plan. Make sure you know why a test is being performed, and how the results will affect the next steps in your management.
  • Advocate for YOU. If you feel that your doctor is not listening or does not understand what you are going through, don’t hesitate to 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 can also have a nurse or nurse practitioner you trust accompany you during your appointment, or a friend or family member, helping you advocate for your own best health. And remember, if you feel like you could be getting more from your care, don’t hesitate to seek a second opinion even if it seems tough. Whenever possible, please let your doctor know that you would like a second opinion, so that communication can remain open and records can be provided. Your doctor may even have a trusted colleague that s/he prefers for these types of referrals. You might say something like “I trust you, but I’m concerned about my situation, do you think a second opinion would be helpful for me?” Or, if you feel that you are not being heard, you can certainly say “I think my situation may be better handled by someone who focuses only on IBD or patients in my situation. Do you have any recommendations?”

Let Your Inner Superhero Be Heard

Brave. Fearless. Determined. Courageous.

No matter what your superhero type, these are a few of the many admirable traits people with CD or UC exhibit.

Just as each of you is a unique person 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 innate 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 and fortitude are unwavering. Even if something doesn’t work, you don’t give up without a fight. 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 toward you in social settings. 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 mountain is too high to climb. 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.

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

Whether someone you know has had CD or UC for years, or was recently diagnosed, it can be challenging to find an 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 Andrea Meyer, Megan Starshak and Sara Ringer. Read more about them here.

1. Where to Start

If your loved one has been diagnosed with CD or UC recently, it’s important to keep in mind that they could be nervous about the changes they may have to make in their lives. Although you’ll both have a lot to learn, there are ways you can prepare yourself to support them in meeting the challenges they are facing.  To learn more about what your loved one might be going through, Get the Facts.

Though the severity of IBD ranges, many patients with CD and UC are able to do the activities they enjoyed prior to diagnosis. Remember that many activities can simply be adapted in order to make them friendlier to someone’s CD or UC symptoms. For example, did you and 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 Do-It-Yourself project to conquer – you’ll be working on creating 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 patients with IBD often experience.

Just remember – everyone is different, and there are a variety of ways to support people with CD or UC. 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 – even those in remission – disease flare-ups and symptoms can come unexpectedly. Symptoms don’t care about what plans you may have had in place. 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 they likely weren’t cancelled lightly. Patients often end up feeling guilty that they are ruining plans or inconveniencing others. When someone experiences a disease flare-up or symptoms, it can force them to stay in the house, in a great deal of pain, 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 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 CD or UC 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 patient in the hospital, to treatments not working, living with CD or UC 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 a confidante after an especially tough experience.

Did you know: stressful situations may exacerbate symptoms 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 or even an issue at work, so keep in mind that a stressful situation can have more impactful consequences for people living with CD or UC – 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. Caregivers should have a good understanding of what might trigger an individual’s symptoms.

Sometimes, patients will want and appreciate your support – such as driving them to doctor appointments or being willing to listen when they talk about their experiences. But at other times, a great friend can help by getting their mind off of their disease, which can feel like it’s taking over their life. Hanging out on the couch, going for a relaxing walk, or doing something that feels “normal” can help someone with IBD feel like a weight has been lifted and that they still have a sense of normalcy in their life.

CCFA offers online and in-person support programs for patients and caregivers alike; go to the IBD Help Center or call 1-888-694-8872 to find what works best.

4. Offering Your Point of View

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 with CD or UC to take control of their treatment plan with the help of a healthcare provider, 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 the doctor’s office? Have you ever offered? If you do join your friend or family member’s visit, 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 your loved one beforehand. While there can be unexpected twists and turns at the doctor’s office, this might help avoid an awkward situation, in which your loved one is embarrassed or uncomfortable with the conversation you’re engaging in with their healthcare provider. A list of key points might also help you stay focused when sitting down to talk with your loved one. 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 caregiver who takes the time to learn about IBD from good sources shows someone with IBD that they are interested and truly care. At the end of the day, remember that just being there to listen without judgment in order to validate feelings also goes a long way.

Let Your Inner Sidekick Be Heard

Brave. Fearless. Determined. Courageous.

Just as each person has a unique personality, 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.

Read on to learn more about making the most of your super self and innate abilities!

A cheerful champion wears a cape of optimism. Your ability to find the bright or funny side of any situation is magnetic to those around you, and your positive attitude helps patients keep their head up when their symptoms are getting them down.

Sidekick Strength: Let your personality shine through and remind patients that there’s hope – both in the moment, and in the big picture. Let your natural humor lighten situations when appropriate, and energize the fighting side of those around you.

Superhero Pro Tip: Remember to read each situation and evaluate when your loved one needs a little more serious superhero strength. You can find ways to keep your optimistic tone and point of view, but still be a pillar of strength when an ‘all business’ approach is called for.

Your calm demeanor makes you an incredibly reliable friend to your loved one with IBD. Your presence can be a calm in the storm of symptoms, as you are naturally someone that others know they can depend on.

Sidekick Strength: Keep up your loyalty and dependability for the patient in your life. You’re a steady rock that others can lean on for a last minute ride to the doctor’s office.

Superhero Pro Tip: Don’t let your dependability be a background strength. Take time to speak up and let your loved one know that you’re there to support them in any way they may need. Remember that as prepared as you often are, the person who has IBD still knows his or her body and symptoms best, and sometimes you may just need to step back and follow their lead.

Your loyalty in standing by your friend’s side through all the ups and downs knows no bounds. You’re always eager to celebrate the good times, and lend advice through the struggles.

Sidekick Strength: Your proactive energy and loyalty can keep your loved one going when they are feeling like they are losing hope. Your devotion to learning about IBD and exploring research and treatment contagiously empower those around you.

Superhero Pro Tip: Don’t get too caught up in your own journey as an IBD supporter, but remember that it’s the person with IBD’s disease, experience, and ultimately, decisions. Try avoiding phrases starting with “If I were you…” and offer a simple “Have you checked out something like this?” Also, challenge yourself to let your loved one tell you what they are thinking, and let them lead the conversation. Be an engaged listener and allow them to “let it all out” – it will be educational and therapeutic for you both!

Your curious mind and unusual thought process often leads you to see different points of view. Your conversations help patients explore outcomes and view things in a different light.

Sidekick Strength: Your inquisitive disposition is a secret weapon for breaking emotional or mental cycles that leave patients feeling lost. Your insightful outlook reminds patients that there still may be options, and that there’s still hope.

Superhero Pro Tip: Don’t lose yourself in your own web of thoughts and forget to provide simple support to your friend. Practice starting conversations about IBD, being an active listener, and bringing up supportive thoughts when the situation calls for it.

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.