 |
 |
 |
Living with 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 handled successfully 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).
Major Symptoms of Crohn’s Disease
The symptoms of Crohn’s disease can vary depending on the age of onset and the part of the intestinal tract affected. Most common symptoms reported by people with Crohn’s include abdominal pain and tenderness, frequent or severe diarrhea, rectal bleeding, weight loss, anorexia, and fever. Other symptoms may include fatigue, fistulas, and sores around the anal area. A new survey of people with Crohn’s disease, Voices of Crohn’s, revealed 90% reported diarrhea, 85% reported abdominal pain, and 84% reported sudden urges for bowel movements as highly bothersome symptoms of Crohn’s disease within the past 12 months.
Emotional Factors
Being diagnosed with Crohn’s disease can negatively impact 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 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 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.
Living a Comfortable and Fulfilling Life with Crohn’s Disease
The workplace can be one of the most challenging areas for people living with Crohn’s. Based on people surveyed, it is estimated that the impact of lost productivity for employers due to Crohn’s disease could be as high as $1.3 billion per year; a result of Crohn’s patients missing approximately 25.8 days per year — nearly 5 working weeks — due to the disease. Patients also report that they are less productive than usual for an average of 50.8 days — more than 10 working weeks of the year. In addition, the survey found that approximately 56% of Crohn’s patients needed to either miss work or leave work early, on a frequent or intermittent basis, due to the disease. Although this results in a considerable economic impact for employers, most patients feel that their employers still underestimate the impact of the disease.
Furthermore, 37% of Crohn’s patients avoided taking a job or promotion due to the complications of the disease. In addition, upwards of 20% of people with Crohn’s attempt to conceal their illness from their employers. But you may find this secrecy is unnecessary once you feel comfortable approaching your employer about your needs. Initiating that conversation can be a difficult but important step toward gaining the support you need to do your job well.
The Crohn’s & Colitis Foundation of America recommends the following tips designed to help you create mutual understanding with your employer and make your workplace a supportive, comfortable environment.
Be honest
Most supervisors want to accommodate their employees as best they can so that they can continue to perform well on the job. You know your work environment best, if you are comfortable speaking to your supervisor about your disease, initiate a conversation. Chances are, your supervisor will be glad that you shared the information.
Ask for what you need
Sometimes small changes—like being seated close to the restroom—can make a big difference in your overall sense of comfort at work. You may also mention specific dietary needs that may come into play during company luncheons or other social events. Don’t be afraid to ask for what you need.
Discuss hypothetical situations in which you might need time off
If you experience recurring flare-ups that leave you unable to go to work,
discuss provisions for time off, including unpaid sick time. According
to the Voices of Crohn’s survey, the Crohn’s patient is likely
to miss approximately 25.8 days of work per year, so it is a good idea
to understand your disability benefits, in case you need to work from
home or be hospitalized for an extended period of time.
Ask about opportunities to telecommute
Telecommuting, or working from home, can be a good way to cope with IBD when your health is not at its best. Provided that you can still work effectively during those times, discuss with your supervisor the possibility of working from home periodically. Alternatively, a routine of telecommuting—for example, once or twice a week—may alleviate stress and decrease the likelihood of an IBD-related problem occurring at work.
Communication
Providing more information about the disease will encourage those with symptoms to speak to their physician about managing their disease. With physician care and the proper treatment, Crohn’s patients 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.
Back to top
