Living With Crohn's Disease and How It Affects Your Life
Picture of Crohn's Disease
If you have Crohn's disease, you are already aware of the many challenges you face. If your disease was only recently diagnosed or you have a loved one with the disease, you may be struggling to understand what this disease will mean to you and your family. Here are some points that may help you understand Crohn's disease, and tips to make a plan in living with this chronic illness.
- Crohn's disease is a chronic illness. Crohn's disease will be a part of you for the rest of your life. Adjusting to that alone is difficult for many people. It can be very hard to accept that you will be living not only with the effects of the disease, but also with the unpredictability of disease flare-ups, limitations of your activity, frequent doctor visits, uncomfortable medical tests, and medications and their side effects.
- Crohn's disease is a potentially serious disease. Inflammation in the digestive tract can cause serious complications such as bleeding, holes in the intestinal wall (perforation), pockets of infection (abscesses), and abnormal connections between the digestive tract and other parts of the body (fistulas). Crohn's disease also can cause inflammation and damage to other parts of the body, such as the joints, skin, eyes, mouth, liver, and bile ducts. You may need to spend time in the hospital if you have a severe flare-up or complication.
- Nothing you did or didn't do caused you to have Crohn's disease. There is no evidence that diet, stress, medications, or other lifestyle factors cause Crohn's disease. The disease seems to be caused by some trigger in susceptible people. We don't know what makes a person susceptible, but it is probably genetic. We also don't know what causes the triggers. It may be infection with a specific bacteria or virus.
- There are many treatment options available to manage Crohn's disease, although there currently is no cure for the disease. The critical part of treatment is reducing inflammation, which helps to relieve the symptoms, and decrease the risk of complications in most people. Several different types of medications including anti-inflammatory medications such as corticosteroids, immunosuppressants, biologic therapies, and antibiotics are available. If one drug doesn't work, another probably will. Surgery is another treatment option if medications do not help.
- You are not alone. About 1 million people in the United States have Crohn's disease. There are other people who understand exactly what you are going through and want to help. A number of groups exist to educate the public and policy makers, raise funds for research, and provide support and assistance to people affected with the disease.
How Do You Reduce Stress Living With Crohn's Disease?
Living with Crohn's disease can be stressful. For most people, the greatest stress is brought on by the unpredictable and embarrassing symptoms rather than the discomfort of the disease. Many people feel frustrated, angry, resentful, guilty, and/or depressed about their disease. These feelings are understandable, but they only increase the stress.
Reducing stress is largely a matter of adjusting expectations. Understanding the reality of your disease allows you to accept the challenges and limitations you now face. These more realistic expectations reduce frustration, disappointment, and negative feelings. Here are some tips for changing expectations -- yours and those of your family and friends.
- Learn everything you can about Crohn's disease and how it affects you. Understand your symptoms and what makes them better or worse. Accept that having Crohn's disease is just bad luck and not the result of anything you did or didn't do.
- Get involved in managing your disease. Take control. Become a partner with your doctor and other health care team members and make decisions together. Ask questions. Understand the risks and benefits of the available treatments and why your doctor is recommending specific treatments.
- Educate your family and friends about Crohn's disease and the limitations it places on you. Explain how the disease works and let them know that you sometimes won't feel well enough to carry out plans or join in spontaneous activities. They will be much more understanding and supportive if you tell them ahead of time that this might happen and why.
- Seek support from others. Communicate your needs so your family and friends understand what they can do. Don't expect them to read your mind. If you want to talk about your feelings, ask for their support. If they are unable to provide it, seek support from a support group or professional mental health counselor. You can find support groups for Crohn's disease through the Crohn's and Colitis Foundation of America.
- Stay active and involved in life. Physical activity reduces stress and may help you feel better. Remain as active as you can, physically, mentally, and socially. Withdrawing from other people simply increases feelings of isolation and depression. Remaining engaged with other people helps you feel "normal."
- Allow yourself the right to feel ill. Sometimes you just will not feel well enough to carry out normal activities. Accepting that and giving yourself permission to rest and cancel plans reduces guilt, anxiety, and stress. Recognize that the disease is unpredictable and that you will not always be able to forecast how you will feel on a given day.
What is Crohn's disease?
How Can You Help a Loved One With Crohn's Disease?
It may be difficult to accept that you have no control over your loved one's Crohn's disease. That doesn't mean there is nothing you can do. Your loved one relies on you more than ever for caring, understanding, and support.
- Respect your loved one's privacy. He or she has embarrassing and uncomfortable symptoms and has to undergo invasive tests and examinations. Allow your loved one to talk about these as much or as little as he or she wants. It is not necessary for you to know all the details.
- Offer to go along on doctor visits. Doctor visits can be stressful for your loved one. Just being there can provide tremendous support.
- Be encouraging. It is natural for your loved one to sometimes focus on the negative aspects of the disease -- the discomfort, the limitations, and the sacrifices. Try to be positive and keep him or her focused on goals.
- Listen to what he or she is saying. Sometimes a comment about one thing may be masking a feeling about something else. For instance, a complaint about her appearance may signal that she is concerned that you no longer find her attractive. People with Crohn's disease often suffer loss of self-esteem with changes in their appearance. Try to figure out what is really wrong and address that.
- Show that you care. By being loving and attentive, you are telling your loved one that the disease makes no difference in the way you feel about him or her.
What is Crohn's Disease? Crohn's and Colitis Foundation of America. 2020.