Ulcerative Colitis & Your Family

It is normal to feel alone and frustrated. But remember, despite the private and humbling symptoms, you are not alone. Half a million Americans have this condition. And those closest to you don't want to see you suffer in silence. They can help you cope with ulcerative colitis and improve the time you spend together. But they may not always know how or when to give you support.

So talk to your family members and those who care about you. Explain what you're going through. Together, you can decide how they can help you manage ulcerative colitis. Have them read the following information to help them understand your experiences:

• Work: People with ulcerative colitis are concerned about functioning at work or missing it altogether because of diarrhea, abdominal pain, or reduced energy levels commonly associated with flare-ups. Fatigue and loss of appetite may make it difficult to concentrate and keep spirits up. Talk with your loved one about how he/she feels. Listen to his/her concerns or problems. Your support is very important, and an understanding, non-judgmental ear is often the best support you can offer.
• How It Affects You: Ulcerative colitis affects everyone in different ways. While some people find the condition debilitating and may want to stay home due to fear of flare-ups, others keep a positive attitude and continue to enjoy the little pleasures of life. Encourage your loved one to continue doing the things he/she likes.
• Relationships: People with ulcerative colitis are conscious of their attractiveness and the effect the condition has on relationships with their family and friends. They may feel guilty and embarrassed due to not being able to fully function as spouses, parents, or friends. Know that your loved one is still the same person and be patient. Support him/her and appreciate what you have been able to accomplish together.
• Medication: Work with your loved one to develop a reminder system for their daily ulcerative colitis medication. While it might be tempting for someone with UC to stop taking medication once the flare-up subsides, remission therapy can help reduce the risk of future flare-ups and may help improve your time spent together. It's important your loved one fully complies with the prescribed regimen.
• Future Plans: Your loved one wants the hope that the future will be better than the present. While they may be reluctant to make plans for the future or take risks such as extended vacations, they can still have a fulfilling life in remission. Encourage them to aim for his/her dreams and set goals.
• Doctor's Visits: Accompany your loved one to the next doctor's visit to learn more about ulcerative colitis and the specific ways you can help. This will also give you a chance to meet the health care team, if you haven't already.
• Self-Help Group: Together, join a local self-help group for people with Crohn's disease and ulcerative colitis and their families. Crohn's & Colitis Foundation of America (CCFA) sponsors support group meetings. Go to www.ccfa.org or call CCFA at 1-800-343-3637 for more information.
• Education: Help your loved one find out more about their condition. Become familiar with brochures and books you can obtain from your doctor, local library, CCFA chapter, and Books & Links.

The above information was provided by Lisa Richardson, CCFA, past Chairperson of the Board.