The Crohn’s Disease Support Center

Crohn’s disease is an inflammatory bowel disease, the general name for diseases that cause swelling in the intestines. Because the symptoms of Crohn’s disease are similar to other intestinal disorders, such as irritable bowel syndrome and ulcerative colitis, it can be difficult to diagnose. TSC has scoured the Internet and assembled links to the very best resources about Crohn’s disease: articles, blogs, forums and tools that can help you make better decisions and take action to overcome the range of physical, emotional and other challenges that you face. As you’ll see, we always welcome your ideas and suggestions to make this Crohn’s Disease Guide even more helpful to survivors like you.

JUST FOUND OUT

Survivors Say: Best Resources for Crohn’s disease

WebMD: Crohn's Disease Health Center An extensive backgrounder on Crohn's disease, from symptoms to support organizations.

Mayo Clinic: Crohn's Disease The website also gives detailed information, including lifestyle and home remedies, and alternative therapies.

The Crohn's and Colitis Foundation of America A nonprofit, volunteer-driven organization dedicated to finding the cure for Chron's disease.

The Big Picture

Crohn's disease is a type of inflammatory bowel disease (IBD), which is a condition that leads to inflammation of the digestive tract, causing severe diarrhea and abdominal pain, that can often spread deep into the layers of affected tissue. It affects men and women equally and seems to run in some families; about 20 percent of those affected have a blood relative with some form of IBD, typically a parent, sibling or child. Crohn’s disease can occur in all age groups but it is more often diagnosed in people between the ages of 20 and 30. People of Jewish heritage have an increased risk of developing Crohn’s disease, as do smokers.

National Digestive Diseases Information Clearinghouse: Crohn's Disease

Your Crohn’s disease

The more you know about how Crohn's disease affects you, the more you can do to manage the symptoms. Start a diary to track your symptoms over several weeks, looking for patterns in your diet and lifestyle that may be aggravating them, then discuss the results with your doctor.

Living with Crohn's Disease: Daily Crohn's Disease Diary

Because Crohn's disease is similar to other digestive diseases, it is important to understand the symptoms so that you know when to seek medical advice.

• Mayo Clinic: Crohn's Disease - When to Seek Medical Advice
• WebMD: When to Call a Doctor

Your World

Being diagnosed with Crohn's disease can affect you emotionally as well as physically. If you're feeling embarrassed, anxious and depressed about having Crohn's, talking with a support group or mental-health professional who understands the symptoms can be beneficial.

• Mayo Clinic: Crohn's Disease - Coping and Support
• CCFA.org: Living with IBD - Depression

Talking with friends and family about your situation is a good idea so you can make them understand what you're dealing with, and get their support.

Living with Crohn's Disease: Talking About Crohn's Disease

If your child has been diagnosed with Crohn's disease, it can be overwhelming as a parent to manage their health and coping abilities. With patience and good planning, you can help your little ones keep the symptoms at bay.

CCFA.org: Info for Kids and Teens

Crohn’s Disease Myths

Eating certain foods can cause Crohn's disease

Stress causes Crohn's disease

Crohn's disease is contagious

Crohn's Online: Test Your Knowledge

Information and Recommended Links for Survivors:

• eMedicineHealth.com: Crohn's Disease
  
• About.com: Crohn's Disease
• Medline Plus: Crohn's Disease
  

Types of Treatment

Anti-inflammatory drugs are often the first line of defense against Crohn’s disease. Immunosupressants and antibiotics may also be recommended as possible treatment. If drugs are unsuccessful, your doctor may recommend surgery to remove the damaged portion of your digestive tract or take out scar tissue.

WebMD: Crohn's Disease - Treatment Overview

Possible Treatment Side Effects

While treating your Crohn’s disease is important, there are side effects you should consider before opting to undergo a specific treatment. Discuss the benefits versus risks with your doctor before you move forward.

Mayo Clinic: Chron's Disease - Treament and Drugs

New Therapies

Research is constantly being conducted to better treat and cure Crohn's disease, and there are currently around 80 new therapies for IBD in the pipeline.

CCFA.org: Key Research Outcomes

Alternative Treatments

More than half of people with Crohn's disease use some form of alternative therapy, including nutritional supplements, probiotics and fish oil. The majority of these therapies aren't regulated by the Food and Drug Administration, so it's important to discuss alternative treatments with your doctor beforehand. 

Mayo Clinic - Crohns Disease - Alternative Medicine

Home Therapies

Dietary and lifestyle changes are very useful in preventing flare-ups.

• Mayo Clinic: Crohn's Disease: Lifestyle and Home Remedies
• WebMD: Creating a Crohn's Disease Diet Plan
  

Creating a Support Circle

• Set up your TSC Survivor Profile
• Join support groups of other survivors or set up your own
• Interact and provide updates on your profile or our forums

Insurance & Work Matters

Insurance Matters

If Crohn's disease becomes too big a problem

CCFA.org: Social Security - Applying for Benefits

Work Matters

Learn about what you can expect in terms of your employment rights as a Crohn’s disease survivor.

About.com: Know Your Rights - The Job Interview

Healthcare Providers Who Can Help

Gastroentologists are the most experienced professionals for diagnosis and treatment of Crohn’s disease.

CCFA.org: Finding a Specialist or Treatment Center

Communicating with Your Healthcare Providers

• Write down any questions you may have ahead of time. Write down the answers to those questions as your healthcare provider walks you through them. Don't be afraid to ask for clarification on anything.
  
• Bring a friend or family member with you to your appointments, not only to provide support but to lend an extra ear to understand everything your healthcare provider has to say and to think up any more questions you may have not realized or forgotten to ask.
  
• Don't be afraid to ask any question, even if you may be scared of the answer. Ignorance won't help you fight this disease.
  

The Emotional Roller Coaster

To avoid experiencing stress and anxiety over having Crohn’s disease, it's important to continue living your life normally, participating in the same daily activities you've always done, while accommodating your special needs. Support groups are also important for maintaining a healthy emotional state; other people dealing with Crohn’s disease in their past can empathize with you and help you to better cope. By telling your story, you can not only put your journey into perspective your thoughts and feelings, you can provide hope to others who are going through a similar journey themselves.

CCFA.org - Crohn's & Colitis Community

Books Survivors Recommend

• 100 Questions & Answers About Crohn's Disease and Ulcerative Colitis: A Lahey Clinic Guideby Andrew Warner and Amy Barto
• The First Year: Crohn's Disease and Ulcerative Colitis: An Essential Guide for the Newly Diagnosed by Jill Sklar and Manuel Sklar
• The New Eating Right for a Bad Gut : The Complete Nutritional Guide to Ileitis, Colitis, Crohn's Disease, and Inflammatory Bowel Diseaseby James Scala

What Survivors Wish They’d Known

Dealing with Crohn’s disease: Information for Co-Survivors:

How you can help

• Assist your friend or family member with their day-to-day duties or chores, but be sure to find a good balance so as not to throw off his pattern of living. That could increase his stress because he could feel like he's becoming a burden.
• Preserve your friend or family member's daily activities. It's normal to feel protective but excluding her from activities or decisions you don't see eras fit enough to do or make contributes to her feelings of helplessness
• Involve your friend or family member with others. Don't focus exclusively on his disease and treatment plan when interacting with him. Talk to him about own life or make plans to visit friends and loved ones.

What to say

• "There are a number of good treatment options to consider."
• "I want to help any way I can."
• "If you want to talk, I'm here to listen."

What not to say

• "You just have a weak stomach."
  
• "It could be worse."
  
• "You don't look sick."
  

How to Build a Support Network

• Set up your TSC Co-Survivor Profile
  
• Talk to other survivors or form a support group
  
• Share your own story of how you beat this disease
  

Remission / Recovery / Recurrence

Each case of Crohn’s disease is different in that symptoms and treatments can vary. While Crohn's disease may never be cured, survivors can find the right treatment and lifestyle patterns to manage the condition with fewer symptoms.

• CCFA.org - Living with IBD
• WebMD: Crohn's Disease - 54 Tips to Help You Manage
  

If your Crohn’s disease flares up, you'll need to get more information and guidance

CCFA.org - Information Resource Center

A good emotional boost is to read stories about other Crohn's Disease sufferers and how they're making the most of their lives.

CCFA.org - Personal Stories

Give Back

To find better treatments and a cure for Crohn’s disease, consider donating your time and/or money to an organization focused on Crohn's disease research and advocacy.

CCFA.org - How You Can Help

If diet and lifestyle changes, drug therapy or other treatments don't relieve your symptoms, your doctor may recommend surgery to remove a damaged portion of your digestive tract, close fistulas or remove scar tissue. Nearly three-quarters of people with Crohn's disease eventually need some type of surgery. That can provide, at best, years of remission but the benefits are only temporary. While usually not fatal,  Crohn's disease often recurs, frequently near the reconnected tissue or elsewhere in the digestive tract. As many as half of patients will need a second procedure, and some may require a third. The best approach is to follow surgery with medication to minimize the risk of recurrence.