Helping Families Understand Crohn’s Disease and Its Symptoms
What is Crohn’s Disease?
Living with a chronic disease like Crohn’s can pose new challenges to a person’s everyday life. But with communication, understanding, and compromise, many of those challenges can be successfully handled by both you and the people whose lives you touch.
Crohn’s disease is a chronic inflammatory disorder of the gastrointestinal tract that typically develops in patients between the ages of 15 and 35 and in a smaller group of patients between the ages of 50 and 70. Approximately 500,000 Americans are affected by Crohn’s disease, with men and women being affected equally. Crohn's and a related disease, ulcerative colitis, are the two main disease categories that belong to a larger group of illnesses called inflammatory bowel disease (IBD).
What Causes it?
The cause of Crohn’s disease continues to be investigated, with researchers examining several factors, including the immune system, viral or bacterial infections, and genetic predisposition, all of which appear to contribute to this disease in some way. A person with an affected relative is 10 times more likely to develop Crohn’s disease than is the general population and is 30 times more likely if that relative is a brother or sister.
What are the Symptoms?
The symptoms of Crohn’s disease can vary depending on the age of onset and the part of the intestinal tract affected. The most common symptoms reported by patients include abdominal pain and tenderness, frequent or severe diarrhea, rectal bleeding, weight loss, and fever. Other symptoms may include fatigue, fistulas, and sores around the anal area. A new survey of patients with Crohn’s disease, Voices of Crohn’s, revealed that 90% of patients reported diarrhea, 85% reported abdominal pain, and 84% reported sudden urges for bowel movements as bothersome symptoms of the disease within the last 12 months.
Can it be Cured?
Currently, there is no cure for Crohn’s disease. The goals of treatment are to induce remission, heal mucosa and help alleviate symptoms as much as possible. Although considerable progress has been made in IBD research, investigators still do not know what causes Crohn’s disease.
Emotional Factors
Being diagnosed with Crohn’s disease can negatively affect a patient’s health-related quality of life, including physical and emotional well-being, social interaction and self-esteem. According to the Voices of Crohn’s survey, 50% of patients report that Crohn’s disease has a significant impact on their emotional well-being. Some patients may react to their diagnosis and treatment with anxiety, depression, denial of chronic disease, or need for dependence. When these emotional responses interfere with daily life, it is important that patients attempt to improve their methods of coping with the condition. Patients might find comfort in dealing with their psychological responses individually, with family or friends, with their physician, or with a mental health counselor.
Facing the Challenges of Crohn’s Disease
While Crohn's is a serious chronic condition with many complications, it is not considered a fatal illness. People with Crohn’s go to great lengths to try to lead useful and productive lives, which is challenging given the life-altering symptoms of Crohn’s that are often unpredictable and severe, sometimes leading to emergency room visits or hospitalization. In between flare-ups of the disease, many individuals may experience a period of remission. But everyone is different, and it is up to the person affected and his or her physician to find the treatment that works best.
According to the Voices of Crohn’s survey, patients living with Crohn's find the ability to engage in physical activities, get proper sleep, attend social engagements, and plan vacations to be difficult. Eighty-three percent of patients found that due to their Crohn’s disease, they have gotten much less sleep than they would have liked. Specifically, patients reported that they got the rest that they needed on average only 12.5 days out of the last 30 days.
While 77% of people surveyed expressed the need to be open about the symptoms of the disease with their friends and family, they also find their relationships with their spouses, partners, and family members to be significantly impacted by the disease, and more than half have avoided intimate situations with their partner due to the disease. Close to one-third of people surveyed reported having trouble maintaining their relationships with their spouse or partner.
There is no evidence that elements of diet can cause or contribute to IBD. However, if a person is diagnosed with IBD, dietary changes may help to reduce symptoms. Voices of Crohn’s revealed that 56% of people with Crohn’s cite the ability to eat what they want as a limiting situation attributable to Crohn’s. Just as each person is different, dietary needs will be different, so it may be helpful to contact a physician regarding any associations he or she may have with registered dieticians who can assist in individualized meal planning.
How to Support your Family Member with Crohn’s Disease
When a family member is diagnosed with a chronic illness, everyone in the family is impacted. Naturally, as a family, you want your family member to get the best care possible. More than half of the Crohn’s patients surveyed for Voices of Crohn’s feel that their family tends to underestimate the impact of the disease on their daily lives. Understanding and recognizing your family member’s condition can help him or her deal more easily with Crohn’s and its implications. It’s important to reassure affected persons that you love them and want to hear about their hopes and concerns. Finally, family members may want to share information with friends, neighbors, and school personnel.
Communication
Since there is no cure for Crohn’s disease, and the perception among those surveyed is that awareness is limited among physicians, families, friends, and co-workers, providing more information about the disease will encourage those with symptoms to speak to their physician about treatment. With physician care and the proper treatment, people with Crohn’s may be able to live more comfortable and fulfilling lives.
Additional Links/Resources:
Crohn’s Resource
Crohn’s Resource features tips, topics and general information about Crohn’s disease, including the latest news about Crohn’s disease, clinical trial information, and a glossary of terms. Crohn’s Resource can be accessed online at www.crohnsresource.com.
Crohn’s & Colitis Foundation of America
The Crohn's & Colitis Foundation of America is a non-profit, volunteer-driven organization dedicated to finding the cure for Crohn's disease and ulcerative colitis. The Crohn’s & Colitis Foundation of America can be accessed online at www.ccfa.org.
National Institute of Diabetes & Digestive & Kidney Diseases
The National Institute of Diabetes & Digestive & Kidney Diseases (NIDDK) is a division of the National Institutes of Health that provides government funding for digestive disease research. The National Institute of Diabetes & Digestive & Kidney Diseases can be accessed online at niddk.nih.gov.