Crohn’s disease is an inflammatory bowel disease that occurs when inflammation in your digestive tract causes stomach pain, diarrhea, fatigue, and weight loss.
Crohn’s symptoms can range from mild to severe, and the condition can flare up unpredictably, making daily life challenging.
Crohn’s disease can disrupt daily activities, work, and social connections. Having strong social support can help reduce stress, which is linked to fewer flare-ups in people with Crohn’s disease.
Support for Crohn’s disease is available in many forms. Here’s a breakdown of the emotional, financial, practical, educational, and demographic-specific resources that can help you on your journey:
Emotional Support
These organizations can help you connect with others who share similar challenges:
- Crohn’s & Colitis Foundation: It offers nationwide support groups for people with Crohn’s disease. These groups provide a safe space to share experiences, ask questions, and connect with others. Specialized groups are available for caregivers, people with an ostomy, women, men, and more. The Power of Two peer-to-peer program connects you with a trained mentor who understands Crohn’s and can offer support through video calls, messages, community posts, and resource sharing.
- Crohn’s and Ulcerative Colitis Companion: This platform helps people with Crohn’s find reliable support networks, including reputable social media communities where you can connect with others managing similar challenges.
- Connecting to Cure Crohn’s and Colitis: This organization offers monthly virtual support groups for people with Crohn’s disease. They host groups for siblings and children of people with IBD. They also facilitate monthly support groups for caregivers and patients.
- Professional mental health support: Professional assistance can help you manage the emotional aspects of Crohn’s disease. Licensed therapists, counselors, and psychologists can provide coping strategies to manage stress and improve your quality of life. Your healthcare provider can refer you to a mental health provider, or you can find a therapist by searching online.
Financial Support
Several organizations offer financial assistance programs to help with the costs of managing Crohn’s disease. These include:
- Crohn’s & Colitis Foundation: The website offers guidance on navigating insurance coverage. It also compiles patient financial assistance programs that can help cover the cost of medications, treatments, and other services. The organization’s scholarships and medication co-pay card programs from drug manufacturers can help reduce out-of-pocket costs. If you qualify, you may receive a set amount of financial assistance for the year.
- Patient Advocate Foundation Co-Pay Relief Program: This program helps people with Crohn’s disease manage medication expenses, office visit payments, and medical insurance premiums. Funding availability varies throughout the year, so check the website regularly for updates.
- Patient Access Network (PAN) Foundation IBD Program: The PAN Foundation IBD Program provides financial assistance to people with Crohn’s disease who need help paying for medications. Its IBD fund opens and closes periodically, so applications aren’t always being accepted. Keep an eye on the website for updates on when applications reopen.
- NeedyMeds: This nonprofit organization connects people with programs that help lower the cost of prescriptions, medical expenses, and healthcare services. Its website has a searchable database of patient assistance programs, discount drug cards, and other cost-saving resources.
- Meals on Wheels: For those experiencing financial hardship or difficulty preparing meals due to Crohn’s symptoms, this program offers nutritious, home-delivered meals if you qualify.
Practical Support
Living with Crohn’s disease often means adapting to unexpected challenges throughout your day. These resources can help you manage these situations with greater confidence and less stress:
- We Can’t Wait App: When you need a restroom fast, this app can help. The free app can quickly locate nearby restrooms, including those in businesses that have pledged to offer access.
- Guides on traveling with IBD: Planning a trip with Crohn’s disease requires extra preparation, and guides are available to make traveling easier. Guides include information on packing medications properly, understanding Transportation Security Administration (TSA) regulations, and finding restrooms on the go. They also provide information on finding healthcare providers at your destination and how to handle flares while away from home.
Educational Support
Learning about Crohn’s disease and your treatment options can help you feel more confident in managing your condition. These organizations offer reliable information and resources to help you, your family, and your caregivers stay informed:
- United Ostomy Associates of America: This organization provides education and lifelong support for people who have or will undergo ostomy surgery. Its educational materials can help people with Crohn’s and their caregivers understand what to expect before and after surgery, with learning opportunities through conferences and support groups.
- American Society of Colon and Rectal Surgeons: This group offers expert-reviewed information on Crohn’s disease, including treatment options and surgical care. Its website is a trusted resource if you need help understanding Crohn’s disease to make informed decisions.
- Centers for Disease Control and Prevention (CDC): You can find evidence-based information about Crohn’s disease on the CDC’s website. Its resources cover topics like risk factors and life with chronic inflammatory conditions.
- National Institute of Diabetes and Digestive and Kidney Diseases: It provides educational materials about the causes, symptoms, diagnosis, and treatment of Crohn’s disease based on the latest scientific research. You can learn more about the science behind IBD and potential new therapies.
Demographic-Specific Support Groups
Finding support from people who share both your medical condition and cultural background or life stage can be valuable. The following organizations address the unique experiences of different communities affected by Crohn’s disease:
- Color of Gastrointestinal Illnesses: This group addresses the specific needs and experiences of people of color living with gastrointestinal conditions like Crohn’s disease.
- South Asian IBD Alliance: Their IBDesis Patient Support Group offers support specifically for people of South Asian descent with IBD.
- Just Like Me: This program connects teens with IBD to peers who understand their challenges.
- Campus Connection: This program helps college students with Crohn’s disease manage the unique challenges of campus life.
Support services for Crohn’s disease exist, but knowing where to look can be tricky. Here’s how to connect with the support you need:
Healthcare Providers and Facilities
Your healthcare team is often the best starting point for finding support services. Try the following:
- Ask your gastroenterologist or other healthcare provider for recommendations of local support groups and services
- Request a referral to a social worker or patient navigator who can connect you with financial aid programs and other services
- Check with hospital patient resource centers for information on local programs
- Contact your health insurance company about covered support services, case management, and other resources
Internet Searches
When searching online for support, start with terms like “Crohn’s disease support group” plus your city name. You can also try “IBD financial assistance” plus your state. Many resources have location-based search features showing you nearby options based on your ZIP code.
Social media platforms can also lead you to helpful programs. Search for Crohn’s-related groups or hashtags on Facebook, Instagram, TikTok, or X (formerly Twitter). While these communities offer support and tips, information from social media should not replace professional medical advice from your healthcare team.
If you don’t have internet access, public libraries usually offer free internet services where you can search for support resources.
Affordable Support
Many support services for Crohn’s disease are available at no cost, and those that charge may offer sliding scale fees based on income. Here are some ways to find affordable support:
- Ask about financial assistance programs when contacting support services
- Check if your insurance covers mental health support or nutritional counseling
- Look into community health centers, which often provide services at reduced costs
- Contact your local health department for information on low-cost resources
- Ask about telehealth options, which can have a lower cost than in-person services
When you live with Crohn’s disease, the physical challenges are only part of it. The condition can also affect your mental and emotional well-being.
About a third of people with Crohn’s disease experience depression and anxiety, which are more common during flare-ups or after difficult hospital stays. Some people develop post-traumatic stress disorder (PTSD). The unpredictable nature of the disease can lead to social isolation and concerns about the future.
Managing Crohn’s disease can also bring significant financial stress. People with IBD have healthcare costs that are more than three times higher than those without the condition. Out-of-pocket costs like co-pays, medications, and treatments can add up quickly.
Having a good support system and people to lean on can improve your quality of life and help you thrive.
Providing support to someone with Crohn’s disease can help them better manage this challenging condition. Each person’s experience with the condition is unique, and their needs will likely vary. Below are some ways to offer helpful support:
- Learn about the condition: Understanding Crohn’s disease can help you provide more informed support.
- Be flexible with plans: Be patient and accept that last-minute cancellations may happen due to unpredictable flare-ups.
- Support their dietary choices: Certain foods can trigger symptoms. Be mindful of this when eating together.
- Locate bathrooms: When out together, help identify nearby restroom locations to reduce anxiety.
- Offer practical help: During flares, offer to help with errands, meal preparation, or transportation to appointments.
- Listen without judgment: Sometimes, just being there with a listening ear and acknowledging their struggles can mean a lot.
- Respect their privacy: Let them decide how much to share about their condition with others.
- Advocate when needed: Whether it’s at school, work, or social settings, standing up for their needs can make life easier.
- Celebrate good days: Acknowledge and enjoy periods of remission together.
Support groups, financial programs, and resources like bathroom-finding apps and travel guides can make daily life with Crohn’s more manageable.
Your healthcare team can point you to local resources. Friends and family can support someone with Crohn’s disease by listening, being flexible with plans, and providing help during flare-ups.
