IBD Patient and Family Resources
The Stanford Medicine Children’s Health IBD program offers a self-management handbook for patients and their families called “My IBD Care Book.”
We also encourage patients to sign up for our listserv, which allows you to keep in touch with our community and get the latest news on IBD treatments and therapies. To sign up, please email IBDCeliac@stanfordchildrens.org.
Nuts and Bolts of IBD
About the diagnosis
- Crohn’s & Colitis Foundation: “Facts About IBD”
- Crohn’s & Colitis Foundation: “IBS and IBD: Two Very Different Disorders”
- IBD School with Peter Higgins: “Inheriting IBD”
- NIMBAL: “Professor Nimbal Comic”
About diagnostic tests
- For kids: What to Expect from Endoscopy (video) and Cappy’s Greatest Adventure (video, comic)
- For adults: What to Expect from Colonoscopy and About Colonoscopy
- Lab tests online: Understanding IBD Labs
IBD Treatments
At the Stanford Medicine Children’s Health IBD program, we take an individualized approach for each patient when it comes to therapy. No two individual IBD patients are the same. Based on family- and disease-specific needs, our care team will work with you to find the right balance.
Trouble swallowing pills? Check out Crohn’s & Colitis Foundation’s “I Have to Swallow That? Pill Swallowing Techniques for Kids and Teens” fact sheet.
Need help remembering to take your pills? Here are some tips from Children’s Mercy.
Medications
- Crohn’s & Colitis Foundation: “Aminosalicylates” (5-ASAs)
Sulfasalazine, Asacol®, Pentasa®, Lialda®, Apriso™, Delzicol™
- Crohn’s & Colitis Foundation: “Biologics”
Remicade®, Humira®, Cimzia®, Simponi®, Tysabri®, Entyvio™
- Crohn’s & Colitis Foundation: “Corticosteroids”
Prednisone, Entocort, Uceris®
- Crohn’s & Colitis Foundation: “Immunomodulators”
Azathioprine, Mercaptopurine (6MP), Cyclosporine, Tacrolimus (Prograf), Methotrexate
- Cincinnati Children's: “Medication Decision Cards”
Drug assistance programs
- For Remicade: Janssen Prescription Assistance
- For Humira: Humira Complete
Diets
- GIKids.org, IBD and Nutrition podcast series: Episode 2: “Enteral Nutrition”
- GIKids.org, IBD and Nutrition podcast series: Episode 3: “Specific Carbohydrate Diet”
- NIMBAL: What is SCD and a nutritionally balanced diet?
Complementary and alternative medicine (CAM)
- Crohn’s & Colitis Foundation: CAM fact sheet
- Crohn’s & Colitis Foundation: CAM webcast
Surgery
- Healthwise Decision Aid: “Ulcerative Colitis: Should I Have Surgery?”
Diet/nutrition
- NASPGHAN: “IBD General Nutrition Information”
- GIKids.org, IBD and Nutrition podcast series: Episode 1: “Maintenance of Good Nutrition”
- Crohn’s & Colitis Foundation: “Diet and Nutrition” brochure
- NASPGHAN: “The Specific Carbohydrate Diet”
- NASPGHAN: “Enteral Nutrition Therapy”
Living with IBD
Non-gastrointestinal symptoms
- IBD School with Peter Higgins: “Fatigue”
Immunizations
- NASPGHAN: “Immunizations and Immunosuppression”
Stress and behavioral health
- Stanford Children’s Health: “Stress and IBD”
- Crohn’s & Colitis Foundation: “Emotional Factors”
- Crohn’s & Colitis Foundation: “Depression”
- Crohn’s & Colitis Foundation: “Stress and Anxiety”
Social networking sites and health trackers
- My Crohn’s and Colitis Team
- Crohn’s & Colitis Foundation: Crohn’s and Colitis Forum
- GI Buddy
For younger children
- Crohn’s & Colitis Foundation: IBD & Me Activity Book
- Crohn’s & Colitis Foundation: Pete Learns All About Crohn’s and Colitis
For teens and young adults
- SickKids: “My Health Passport”
- “Just Like Me! Teens With IBD”
- Crohn’s & Colitis Foundation: “Campus Connection”
- Crohn’s & Colitis Foundation: “Teen Guide”
- Crohn’s & Colitis Foundation: “Young Adults and IBD”
Events and camps
- Crohn’s & Colitis Foundation: Northern California Chapter
- Crohn’s & Colitis Foundation: Take Steps for Crohn’s and Colitis
- Crohn’s & Colitis Foundation: Team Challenge
- Crohn’s & Colitis Foundation: Camp Oasis
- Camp Go Beyond
Understanding insurance and IBD
- Kaiser Family Foundation: “Health Insurance Explained”
- Crohn’s & Colitis Foundation: “IBD Insurance Checklist”
