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Crohn's Disease

Managing A Chronic Disease

Living with a chronic disease has often been equated with having a second full-time job. It is a constant management struggle that involves organizing a medication schedule, keeping appointments with health-care providers, and conserving physical and mental energy.

In addition, people with Crohn’s disease must stick to lifestyle regimens that help maintain maximum health. These include:

  • Sticking to a diet that works
  • Getting enough sleep, even if that means saying no to work, community, social, or even family events that require late nights
  • Taking prescribed medication, even when feeling well

Living with a chronically ill family member is stressful for every person in the household. It is important for everyone to understand, however, that the family is the central unit in the support system for any person who suffers from Crohn’s disease.

If a child has Crohn’s disease, the adults’ lives are turned upside down, and siblings may feel that they are being ignored because their parents’ efforts are largely consumed by the needs of the ill child. If a parent has Crohn’s disease, a disproportionate burden of family responsibilities can fall on the healthy partner, turning that person into a de facto single parent. In addition, children may feel uneasy about having a parent who is unable to fully participate in their lives, is frequently in the hospital or at home in bed, and cannot regularly attend school, music, athletic, or other events.

A majority of people with Crohn’s disease will have at least one hospital admission due to the disease during their lifetime, either to treat a flare-up that is not responding on an outpatient basis or to have surgery. But a hospitalization should not be regarded as a victory that the disease has won. Rather, it should be considered a time to regroup, regain strength, and to get back in shape to battle the disease and get back to really living again.

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