A Guide to Help for New Ulcerative Colitis Patients

The first time I learned I had an incurable disease, I found it very disheartening-in my case that disease was endometriosis but it involved many symptoms, immune system side effects, and tests similar to ulcerative colitis. I know everyone dies eventually, but suddenly death seemed more imminent and far too ugly. I couldn't help wanting to know more about the disease, the progression of the disease, the worst case and best case scenarios and if there were anything I could do to help.

You're Not Alone

I don't know why knowing there are more people suffering the same disease as you is comforting, but it is. Many of those people share the same symptoms, have tried and found a medication that works to alleviate their symptoms, have searched for helpful literature and some are willing to talk. Talking with other patients helps to reduce your fear. A couple web sites that offer support groups are:

Daily Strength

Crohn's and Colitis Foundation of America

This May Pass Quickly or Not

According to most web sites and my Merck Medical Manual, about 10% of ulcerative colitis patients have one flare up of the disease and then they continue on with their life without further trouble. But 20-40% of patients eventually degrade to having toxic megacolon-a situation where the colon ceases motion and becomes extremely distended due to accumulated waste or cancer that requires the removal of most of their colon and the installation of an ileostomy, a bag in which waste products are deposited. See links section for good sources of information.

Well Worth Paying Attention

Neither toxic megacolon nor cancer is a desirable outcome of having ulcerative colitis. Managing the symptoms of ulcerative colitis i.e. keeping internal inflammation down will increase patient's long-term successful management of the disease. Find a doctor you can work with to manage your health and make the changes that improve your situation.

Change Your Lifestyle

Many of the websites will tell you that changing your lifestyle will have little effect on the course of your disease. It will have an effect on how you perceive your health. Most American don't get enough exercise, eat poorly, sleep poorly, and are stress cases. A first flare up of a disease like ulcerative colitis is your warning sign-you are no longer young and capable of abusing your body without paying the price. Disease is a sign that you need to pay attention to what you value most in life and ensure that how you are living is accomplishing what you want it to accomplish. Make the changes to improve your health now because when you get older or have to have expensive life-threatening medical care, you will pay the price.

Take Your Medication

Studies show that ulcerative colitis patients who fail to take their prescribed medication tend to have worse problems than those who take their medications. It is a wise practice to use natural dietary and lifestyle changes as much as possible and to use as little medication as possible. Patients should work with their doctor to manage their health. This includes drugs prescribed from the pharmacy and over the counter medications such as tylenol and vitamin supplements.