Since I started the www.talkaboutguts.com website, I have received hundreds of emails from folk who suffer from Crohns Disease.
Some of the stories have been heartbreaking as people tell of multiple surgeries and how they cope with various aspects of the disease.  There is one thread that seems to be common to all the stories, and that is people just don't seem to understand Crohns Disease and what the sufferer is going through.  And to some extent I can understand that.  After all Crohns is not a visible disease.  From the outside we look the same as anyone else.  The problem is inside us.  The disease is attacking our immune system and wreaking havoc on bowels, intestines and colon.  None of that is visible.
Also misunderstood and embarrassing to the sufferer are the trips to the washroom, the cramping and all the other aspects that go along with Crohns Disease.  So with the thought of understanding or lack of it, I have sought out several experts and their thoughts in what I hope will be a series on understanding of Crohns Disease.  As always, your thoughts and stories are welcome at larry@talkaboutguts.com

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COPING WITH CROHN'S DISEASE

By Robert Stein, M.D.

With the treatment options available today, most people with Crohn's disease can live healthy and fulfilling lives. Sometimes though, it’s the psychological aspect that most affects a person who has a chronic illness. You may have to learn coping strategies to deal with embarrassing or painful symptoms. You also may have to learn how to tame your fear of possible surgeries, cancer, or unexpected complications of your disease.

What can I do to cope with my disease?

The following coping strategies can help you deal with the hardships created by your disease:

• Speak with your doctor. Really sit down and talk with your physician and express your thoughts, concerns, and fears. Discuss your medical history. Ask about treatment options. Let your doctor know what your expectations are so that you can play a proactive role in your treatment.
• Get your family involved. Sometimes other members of the family feel helpless, guilty, or angry. It's important for these family members to know that their feelings are not unique. These feelings are shared by many other people who have someone in their family with a chronic disease.
• Educate yourself. Learn everything you can about Crohn's disease to help you cope and to understand your illness.
• Try to reduce and/or accept your stress. Stress can worsen the symptoms of Crohn's disease so it is important to try to deal with it. Sometimes support groups, stress management programs, or individual counseling can be very beneficial.
• Take charge. Become very involved in your treatment, and less dependent on your physician.
• Become more active. In spite of your illness, practice your social skills; get out and enjoy your life.
• Work with a mental health professional. Finding a counselor who can help with treatment of a psychological condition, including depression, anxiety, and marital or family issues, can be very helpful.

What can I do to help my loved one cope with Crohn's disease?

When you find out that someone you love has a chronic disease like Crohn's disease, typically the first reaction is to try to figure out a way to "fix it." But the fact that chronic illnesses cannot be cured may leave you feeling frustrated, angry, guilty, fearful, or resentful. It is best to try to understand Crohn's disease, become familiar with its symptoms, and to be supportive of your loved one who is dealing with the physical aspects of the illness.
The following are some constructive ideas on how to help your loved one cope with the stresses of living with Crohn's disease:

• Be a good listener. It's important to allow your loved one with Crohn's disease to talk and express his or her feelings. While you don't want to ask deeply personal or intrusive questions, encourage the person to share any thoughts or details of the illness they wish to disclose. Empathy is key. Be a compassionate and attentive listener — offering support is more meaningful than offering medical advice. Your loved one has heard all about treatment options from his or her healthcare provider and is coming to you for emotional understanding.
• Offer to go with your loved one to the doctor. Accompanying your loved one on appointments with his or her physician can help to relieve the stress sometimes associated with office visits. Having someone there who cares can provide enormous support. In addition, you can also be available to help take notes and to help in any way that is needed.
• Be respectful of your loved one's privacy. Due to the physical symptoms of Crohn's disease, people with Crohn’s disease are subject to medical examinations and procedures of a very personal nature that can be both intrusive and humiliating. Unless the person with the illness wishes to discuss the details of their disease, it's generally best to allow them their privacy. A sense of dignity and privacy is an important part of living with Crohn’s disease.
• Remind your loved one that he or she is in control. Sometimes people who are coping with a chronic illness feel as if they have no control over their own lives. This feeling can cause a lot of tension and stress. If you ask for permission before doing things to help out, your loved one will feel more in control of his or her own life.
• Be encouraging. People who have Crohn's disease sometimes feel a loss of self-esteem due to several different factors, some of which may include:
  1. Negative body image due to weight loss, side effects of medications, weight gain, or other physical changes
  2. Loss of a job
  3. Being unable to take care of their family

It's important to encourage your loved one in a positive and meaningful way, since a person's perception of himself or herself is what determines that person’s behaviors and emotions.

• Be available. Sometimes, people with chronic illnesses feel like they are a burden to their friends and family, or that they will be abandoned or rejected. By being encouraging, attentive, and loving, you are showing your loved one who has Crohn's disease that he or she is valued.healthcare questions you may have, especially before trying a new medication, diet, fitness program, or approach to healthcare issues.

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