Ulcerative Colitis | Kim's Story
Living Better With Ulcerative Colitis
Practical adjustments, from eating smaller meals to scoping out bathroom facilities when you're away from home, will help you lead a relatively normal life. Here's advice on how to stay upbeat despite living with colitis symptoms.
By Connie Brichford
Medically Reviewed by Niya Jones, MD, MPH
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A positive attitude is essential to dealing with ulcerative colitis. While you’ll have to make small changes to your lifestyle and daily routine, being diagnosed with ulcerative colitis doesn't have to completely overhaul your life. Start here.
Ulcerative Colitis: Making Small Adjustments
Leigh Stein says although she’s had to make adjustments in her life since her ulcerative colitis diagnosis, the condition hasn’t kept her from fulfilling her dream of becoming a teacher. Diagnosed when she was a graduate student in 1999, Stein now proudly teaches fourth grade in Pittsburgh, Pa.
Stein says it’s essential to keep an upbeat attitude as you adjust to the changes necessary for managing ulcerative colitis. Support from family and friends plus her involvement with the , have helped Stein maintain a positive outlook.
Stein first noticed serious colitis symptoms during her final semester of grad school. For her, calling it poor timing would be an understatement. “I can’t go to the hospital right now," she thought as finals weighed heavily on her mind. And so she delayed seeking medical attention and finished the semester. In retrospect, she says her professors would have probably understood and let her make arrangements to complete her coursework after hospitalization. But, at that point, she was wary of allowing ulcerative colitis to interfere with her life.
Ulcerative Colitis: Practical Considerations
As she learned more about her illness, Stein grew to understand that expecting a chronic condition not to change your life is simply unrealistic. But she also realized that she didn’t have to dramatically change her life plans. Instead, she made smaller changes in her daily life to manage the ulcerative colitis more effectively.
One such change was her eating habits. By paying attention to her body, Stein found that she felt better consuming smaller quantities at each sitting. So instead of “three squares,” she now eats smaller, more frequent meals during the day.
Because each person’s needs are different, keeping a food diary of your own can help you determine which foods upset you — whether it’s something specific, like fiber, or something more general, like eating larger meals — and you’ll know how to be extra careful when you’re out and about.
Many people with ulcerative colitis suffer water loss from excessive diarrhea during attacks. So drinking a lot of water throughout the day is another habit you will need to develop to avoid potential dehydration and weakness.
Another practical consideration for people with ulcerative colitis: mapping out where the bathrooms are when you’re away from home. Planning out your route, even for an afternoon of shopping, can make you feel more secure about leaving the house. Find out where the bathroom is as soon as you get to a restaurant or theater so you won’t lose time should you need to use it in a hurry.
If you’re experiencing a bout of frequent diarrhea attacks and will be out of your house, carry a change of underwear and anything else you think you might need in the event of an accident. This pre-planning can help keep stress to a minimum, even when you don’t have your ulcerative colitis symptoms entirely under control.
Ulcerative Colitis: Organizations Offering Support
Living with a chronic condition can put a great emotional strain on many people, and it’s important to get support for your colitis when you need it. This is especially true if anxiety is keeping you from functioning on a daily basis more than the colitis itself. The Crohn’s and Colitis Foundation of America has chapters nationwide that sponsor support groups. “The CCFA is a great source of strength,” Stein says. The CCFA keeps its members up to date on the latest treatments and works to raise awareness about inflammatory bowel diseases.
In addition to its local chapters, the CCFA hosts online forums including discussion boards where you can read about other people’s experiences with ulcerative colitis, and share and receive feedback on your own concerns. Discussion topics range from tips on daily living and traveling with colitis, to what to expect from treatment, and how to cope with the emotional effects of being diagnosed with a chronic illness like ulcerative colitis.
Perhaps the greatest resource that the CCFA has to offer is its members. Stein notes, “I’ve made friends through CCFA who have colitis or have family members with it. It’s good to have people around you who understand what you’re going through.”
Ulcerative Colitis: Getting Support From Friends and Family
People with ulcerative colitis shouldn't hesitate to lean on family and friends during difficult times. “My mom has been my rock," says Stein. "When I’m in pain, she’s in pain. She’s always there with a positive attitude.” She says her other family members and friends have also been great about supporting her by learning everything they can about the illness.
In a sense, Stein and her family and friends have formed their own small advocacy network. She says, “The more people you tell, the more people know about the condition.” She finds it important to spread awareness about colitis, because it’s still unfamiliar to many people. Knowledge is power when it comes to living well with ulcerative colitis.
Video: A patient's experience with ulcerative colitis.
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