How to find help
If you have ulcerative colitis or Crohn's disease, one of the biggest challenges is to learn how to cope with day-to-day life. What if I can't find a bathroom? What foods should I eat? While your medical team can help you get the right medications and treatments, you may need to turn to others for help with these type of questions, or at least for emotional support.
Check out eight great blogs and websites that offer real-world tips and advice for people with ulcerative colitis and Crohn’s disease.
My Life’s Journal
Cynthia is a mother of two in her 40s who has both Crohn’s (since her early teens) and now colitis. Her frequently updated blog, Living With Chronic Illness: My Life’s Journal, chronicles her first gastrointestinal test, her daily 12-drug regimen, and the faith she relies on when even a dozen drugs can’t control her symptoms.
A Chronic Dose
Although not focusing on colitis specifically, Laurie Edwards’ blog, A Chronic Dose, ruminates on what it’s like to live with multiple chronic illnesses. Edwards, 29, is the author of Life Disrupted: Getting Real About Chronic Illness in Your Twenties and Thirties. You’ll find great posts on ways to survive the holidays, how to be a primary-care patient, and even information on the best books to give as gifts.
Online community Chronic Babe: For Babes Who Just Happen to Have Chronic Illness is a site geared toward young women coping with a variety of chronic health issues.
Founder Jenni Prokopy has been living with fibromyalgia since 1997. Prokopy, a self-described “hottie,” posts information on how chronic illness can be sexy and how to make your own heating pad (it takes a tube sock and six or eight cups of rice).
A Site for Teens
UC and Crohn's: A Site for Teens has personal stories, video contests, and everyday coping tips, from what to do if you can't take notes in class as fast as you used to (request a friend to take notes for you or ask your teacher for his/her preparation materials) to how to prepare for accidents (instead of keeping a change of underwear in your locker from where it can drop out at an inopportune moment, ask the school nurse to keep a change of clothes in his/her office).
To help ease the transition from pediatric care to adult health care, try IBD University: Graduating to Independence, a site specifically for teens with ulcerative colitis or Crohn’s disease. Learn about insurance and living on campus, or download a form to keep track of your own medical history.
Great Comebacks Program
Started in 1984, the Great Comebacks Program raises awareness about ulcerative colitis and other conditions that may require ostomy, a surgery to create a new opening in the body to eliminate waste after removal of your colon, rectum, or bladder. The program gives out awards and scholarships and features motivational stories about sex, food, clothing, and even mountain climbing after surgery.
Partnership to Fight Chronic Disease
The Partnership to Fight Chronic Disease is a coalition of patients, doctors, businesses, and experts working to raise awareness about chronic disease. The site is geared more toward effecting health-care policy changes and includes petitions and fact sheets (did you know that almost half of Americans have at least one chronic disease?).