Quality of life with Crohn's disease gets little focus: How to cope
Crohn's disease symptoms that can wax and wane can affect quality of life for those affected. But, according to experts, there has been limited information about how the disease impacts people diagnosed with the condition that is a type of inflammatory bowel disease (IBD).
Some of the difficulties of assessing quality of life for those with Crohn's disease include the nature of the symptoms. Individual reports of quality of life would naturally vary depending on how well someone feels. Irritable bowel symptoms can be completely absent and then recur to become debilitating.
A second problem is the difficulty of finding a full cross-sectional representation of people with the disease to include in surveys - and thirdly, quality of life is subjective and difficult to measure.
Editors Victor R. Preedy and Ronald R. Watson, writing in the 2010 "Handbook of Disease Burdens and Quality of Life Measures" say: "Only recently has an effort been made to determine the impact Crohn’s disease has on health related quality of life. Health related quality of life is a patient’s understanding of and relating to their illness within the scope of their lifestyle and in the process of doing so uses physical, psychological, cultural, educational, professional, and disease associated factors."
As early as 2002, researchers suggested clinical trials should include quality of life measure for people with Crohn's disease, but even now, studies are sparse.
One such finding, published in 1987 revealed little difference in employment, social and sexual activity, and disability between people suffering from the disease and controls. Despite the positive finding, 54 percent of people living with the disease said exacerbation of symptoms put a strain on their personal and professional life.
Compared to other chronic diseases like arthritis, chronic kidney disease and COPD, Crohn’s disease patients have fewer resources to help them manage.
Tips for living with Crohn’s disease
Lack of research about how to improve quality of life for those living with Crohn’s disease or irritable bowel conditions makes it important for patients to understand how to cope. Some suggestions for living with the disease include:
Regular medication adherence
If your doctor prescribes medications that are too expensive, discuss other options. Explore patient assistance programs from pharmaceutical companies.Many medications can be obtained that are not based on income. Visit needymeds.org for a list of options.
Take advantage of wellness programs offered through your insurance company. Most insurance companies have case management services to help coordinate care. Wellness coaches are often available for telephonic support in addition to behavioral health clinical advocates at no cost.
Understand your condition
There are many types of Crohn’s disease. If you are newly diagnosed or have experienced a change in symptoms, ask your doctor for as much information as possible. Especially important is understanding how to know when you’re in remission and how to know if you are having a flare-up.
You will also want to explore the risks and benefits of medications and other treatments, including cost and available help.
Ask about diet and learn what you can do at home to prevent symptoms. Are there over-the counter medications that can help with diarrhea? What about dietary changes during a flare-up?
Keep a food diary
Documenting the foods you eat can help you understand what you might need to avoid. No one food aggravates Crohn’s disease, but general guidelines include avoiding greasy foods, eating smaller, more frequent meals, avoiding spicy food and drinks and limiting high fiber foods like nuts, raw fruits and vegetables and seeds.
Weight loss and nutritional deficiencies can easily develop with Crohn’s disease. Eat a variety of foods to stay well-nourished including fish, poultry and even dairy products if you can tolerate them. It’s also important to drink plenty of fluids.
There is no scientific evidence that stress causes or makes Crohn’s disease worse. But living with any chronic condition is stressful. Join a local support group or consider joining one online to get helpful suggestions from others living with the disease. If you are suffering from depression, speak with your doctor or a mental health counselor. Meditation and yoga can help teach mindfulness so you can become more aware of your body’s needs.
Check your vitamin D level
Crohn’s disease is associated with low levels of vitamin D. Make sure you get adequate sunshine and eat fortified vitamin D foods. You can ask you doctor for a vitamin D blood test. Lower levels of the hormone might affect everything from mood to immunity.
Don’t let your condition own you
Speak with your doctor about surgery
Many patients do well after have a portion of their intestine removed to treat Crohn’s disease. Speak with your doctor about whether surgery might be right for you.
If you have Crohn’s disease, share your symptoms here to help others understand. You can also benefit others by sharing what helps and what seems to make things worse.
Try these foods if you haven’t already
If you haven’t already tried live-culture yogurt to help heal the gut, you may want to take a bit throughout the day. The cultures in yogurt are not long-lived. Try it like medication - a tablespoon at a time when you’re at home. Stop eating yogurt if it makes symptoms worse.
Consider omega-3 fatty acid foods like salmon and mackerel. You can also speak with your doctor about supplements. Omega-3 fatty acids are known to quell inflammation that underlies all diseases.
Swiss and cheddar cheese might also be helpful, especially during a flare-up. Eating cheese is also a great way to ensure you’re getting enough calcium that can easily become depleted.
When you’re having symptoms, eat potatoes, minus the skin to replenish potassium.
Keep high nutritional liquid nourishments on hand like Ensure and other drinks during times when it’s difficult to eat.
Image: Wikimedia Commons