Disease Management Tips from a Crohn's Patient's Perspective

Disease management for a Crohn's patient involves a lot more than keeping the level of symptoms down to a dull roar.

In 25 years of volunteering to assist my fellow patients, I've discovered all of them have concerns about several areas of life. These include:

Medical management: It's pretty simple. You hurt, and you want it to stop. The individuals who appear to be the most satisfied with the medical aspects of this unpredictable condition are those who have found effective doctors who communicate well. How did they find them? Mostly by asking other patients. How do you find other patients? If you're anywhere near a metropolitan area, the quickest way is to contact the Crohn's Colitis Foundation of America (CCFA) and contact the chapter nearest you. You can also enter the name of the disease into your browser's search field and locate a number of other Crohn's sites and blogs.

The second half of medical management is to become an educated patient who takes responsibility for his or her treatment and takes steps to stay in the best condition overall. You can easily do this by getting information from CCFA. When your physician asks whether you want to try medication X versus Y, you need to be aware of what these drugs are and do and willing to commit to a specific answer. It's important not to become so focused on one illness that the patient neglects healthy living habits in general.

Psychological issues: If you are a Crohn's patient, you are dealing with a chronic disease. It won't go away and usually recurs after surgery. You are facing the same psychological issues as someone who suffers from multiple sclerosis, lupus, or a host of other long-term medical conditions. The difference is that while some disabilities are visible, yours is not unless you take steroids long-term. You must face society's distaste of "bathroom" diseases and employers' reluctance to depend on anyone who is sick a lot. And you must go the extra mile and report to work on days when you feel iffy. If you have a support system in place with friends and family members, that's phenomenal. If you don't, contact CCFA to find the nearest patient support group and consider professional counseling on a short-term basis.

Financial management: It pretty much comes down to two words: insurance and job. You might find that your health restricts you to working part-time as I do, and you might search a while before you locate an employer that's a match as far as time off for medical appointments. Patients sometimes get fired for being gone too much; it's an unfortunate fact of life. You can help yourself by making sure your family, friends and former co-workers know when you're looking for a job and a reference. You should also become familiar with disability laws as far as what they do and don't cover.

Some individuals stay in jobs for years solely because the health insurance available covers treatment for Crohn's disease at a fairly good rate. This is why I worked for the Federal government for so many years. The point is that for many of us, having reliable health insurance in place must take preference over salaries or other benefits.

Social interaction: You can stay home in bed with the covers pulled over your head. Or you can get out and about, planning your stops around restrooms. It's unnecessary to haul out 14 pill bottles on your first date or disclose your entire medical history by the second. In general, people tend to see you as you see yourself. If you are able to treat your illness as a minor inconvenience most of the time, others will sense your mood and develop a similar perception. These are often the same people who will take care of things for you when you experience a flare or end up in the hospital. Humor never hurts.

Another important aspect of social interaction is the ability to say No. As someone with Crohn's disease, you have the right to express your preference for restaurant meals. You have a right to a vote when selecting strenuous versus strenuous group activities. Your rights are no less than anyone else's.