Coping with a chronic illness is hard. Many adjustments have to be made in a patient’s life when dealing with, for example, Inflammatory Bowel Disease, and managing a patient’s quality of life with relation to the disease is an important part of overall treatment.
In 2012 Anilga Moradkhani et al., in combination with the California School of Professional Psychology and Mayo Clinic's Division of Gastroenterology and Hepatology, studied the quality of life implications of IBD. The researchers found that in the 134 adults with IBD studied, several factors led to lower reported quality of life (as measured by questionnaire).
Patients with higher perceived stress, greater number of hospitalizations and relapses, less perceived support, lower income, and those who were unemployed or female had a greater tendency to report a lower quality of life score.
The question then becomes: What can be done to increase the quality of life for someone with IBD?
Dealing with stress appropriately
Managing stress can look different for each person. Several positive ways to manage stress involve practicing self-care. This can be as simple as a bubble bath, massage, praying, meditating or spending time in nature. The message here is that whatever makes you feel happy and relaxed, do it.
One study by Jost Langhorst, MD, also noted that one 90-minute yoga session per week improved IBD quality of life (as measured by questionnaire) and reduced colitis activity (as measured by blood and fecal inflammation markers). It might be worth trying this, with your doctor’s approval.
Preventing hospitalizations and relapses
Some complications from IBD cannot be predicted or prevented. However, there are many that can be prevented or caught in the early stages with a little extra attention to your medical care follow-up. This means that patients should be sure they are taking their medications correctly and as scheduled. Don’t be afraid to ask questions of your physician. If you find yourself hospitalized frequently, it may be time to talk to your GI about changes in treatment or adjunct therapies. Resist the urge to skip GI appointments -- even when you are feeling well. These appointments are key in catching inflammatory changes early on.
Finding support for chronic illnesses
Support can come in many forms. Church groups, family, friends, and disease-specific support groups can all help patients deal with chronic illness. A combination of all of these is likely to be the best bet, as each addresses different aspects of dealing with a disease.
Finding an IBD support group, even online, can be a huge help to a patient going through a disease that is rarely well-understood by outsiders. Check out the Crohn’s and Colitis Foundation’s Find a Support Group page for more information on IBD support groups.
Additional factors and warning signs
Some factors that lead to lower quality of life -- like lower income or being female -- aren’t always controllable. But it’s still important to know that they play a role in quality of life, and patients should pay special care to focus on the above-noted controllable factors.
If you find yourself feeling depressed, withdrawing from friends and activities or having thoughts of suicide, talk with your doctor immediately. The National Suicide Prevention Lifeline can be a great resource. Their 24/7 hotline number is 1-800-273-TALK (1-800-273-8255).
Jennifer has a bachelor's degree in dietetics as well as graduate work in public health and nutrition.She has worked with families dealing with digestive disease, asthma and food allergies for the past 12 years.Jennifer also serves the Board of Directors for Pediatric Adolescent Gastroesophageal Reflux Association (PAGER).