Diagnosed with IBD. . . Now What? (Pt. 1)

The first thing you’ll do when your doctor tells you that you have IBD is wonder what in the heck those letters stand for. Well, they mean Inflammatory Bowel Disease (not IBS – Irritable Bowel Syndrome) and IBD includes two diseases – Crohn’s disease and Ulcerative Colitis (UC). 

Your doctor will explain to which you have Crohn’s or UC. He or she will also probably give you an explanation of what the diagnosis means, what treatment they advise giving you, and what your outlook is for living with IBD. All well and good, except that you will be overwhelmed, possibly scared, definitely confused, and won’t take in much of what they have to tell you. Which means once you get home you’ll most likely hit the internet to see what information you can find about your new diagnosis.

Start with reputable web sites like this one - www.healthcentral.com/IBD, as well as the Crohn’s and Colitis Foundation of America’s site - www.ccfa.org, or www.IBDsucks.com, or www.ibsgroup.org (it has a sub-forum for people with IBD).

As you look through any web sites, but especially health-related web sites, realize a few things: 1. there don’t seem to be any two IBDers who can follow the same course of treatment and come out with the same results. 2. you can’t always know who is giving information on a web site, or what they are basing their information - real experience or are they just trying to sell you a new supplement or product? Use your good judgment and discretion about the advice you read. 3. don’t get wrapped up in other people’s problems or experiences of living with IBD. Many of the people who go to health chat rooms really are there to help others. But some people are just there to vent and oftentimes that turns into complaining, whining, and relaying only the worst, most negative details of their illness possible. Go ahead and read about what did or didn’t work for people to get some ideas of what path you might want to go down in treating your own IBD. But, don’t let their experience become your experience. Remember, no two people with IBD have exactly the same symptoms or same experiences living with it. 

What you’ll find out when you go to this web site or the Crohn’s and Colitis web site is exactly what Crohn’s and colitis are: 
Crohn’s disease causes inflammation of the gastrointestinal (GI) tract and can involve any area of the GI tract from the mouth to the anus. But, in most Crohn’s patients it commonly affects the small intestine and/or colon. 
Ulcerative colitis is a disease of the large intestine (the colon) and causes inflammation and ulceration of the colon’s mucosa, or innermost lining. 

When I was first diagnosed with UC more than 10 years ago I remember first feeling relieved. I finally had a real reason for all my symptoms and problems. It was nice to know I wasn’t crazy or making up the severity of my symptoms. But all too soon, I also realized that just because I had put a name to the disease that had been affecting my life for about 5 years that didn’t mean I had found a way to cure myself. In fact, in that same visit, my doctor also told me that there is no cure for IBD. I went from feeling relieved to feeling frustrated, scared, and angry. And, to be honest, I went home and wallowed in my feelings of frustration and defeat for quite a while.