I'm not sure if it's the holiday blues, winter blues, or what but I've been hearing some sad IBD stories from readers as well as some IBD stories of desperation. I know first-hand just how desperate you can feel when diarrhea, pain, cramps, bloating, and fatigue take over your life. It was ten years ago that my symptoms peaked - I was having 20 to 30 bowel movements per day, many accompanied by blood and mucus, pain was always present in varying degrees, my weight was plummeting, what I could eat without causing serious problems was extremely limited, and I was ultimately unable to work, let alone leave my house.
I was fortunate to have health insurance and more fortunate to find a good GI doctor who listened to me, took my problems seriously, administered the appropriate tests that found my diagnoses of IBD and IBS, and encouraged me to learn how to help my body heal. My GI was a Western medicine physician, and I didn't argue with the protocol of medication that he put me on to treat my IBD. The medications immediately helped my pain, and slowly helped to ease my severe diarrhea (I learned early on with IBD that patience is a must when learning to deal with and live with this disease), but I was convinced that there were other methods of healing that I could employ to help me as well. Much to my GI's credit he didn't poo-poo (pardon the pun) my ideas of trying Reiki, meditation, yoga, the elimination diet, and diet changes. In fact, he embraced them and was always curious to know the details and outcomes of my experiments believing that if I found things that helped me perhaps the same methods would help his other patients as well.
My Western and Eastern medical routes converged nicely and today I live a good quality of life despite my IBD and IBS. But it took time, lots of time - nearly four years total - to really figure out what was working and what wasn't working for me and my IBD. The hardest part was changing my diet by way of the elimination diet that I did for nearly three months (I'll devote a whole blog on this topic in the next month), and getting my gut to the point that I could eat and begin to gain weight without spending most of my days and nights in and out of the bathroom. At many times during those first years I felt desperate, depleted of energy both physically and emotionally, and there were even times when I wondered what my life would be like if it continued down the same path I was on. It was at these times that I turned to support groups on the Internet and in person (the Crohn's and Colitis Foundation of America has support groups in all 50 states), I talked about my condition and my frustrations with my husband and my closest friends, and I even began seeing a psychologist who helped me to work through my fears and frustrations of living with a chronic disease. You can read more about my IBD journey in my book, Living with IBD & IBS: A Personal Journey of Success.
My point here is that we all feel frustrated, desperate, defeated, and depleted at some point or another living with IBD. But, know that there is help for both the physical and the emotional pain. For instance, if you aren't happy with your current GI because you feel he/she isn't listening to you or helping you in the way you need to be helped then look for a new doctor who fits better with your idea of patient care. The first GI I went to see was in a convenient location, a mere 5 miles from my home, but I just didn't "click" with him. The helpful GI I ultimately ended up seeing was located an hour and a half drive from my home - not terribly convenient (I quickly learned every clean bathroom between my home and his office), but worth the effort it took for me to see him because I felt comfortable with him and his care and concern for me.
Even though IBD and its associated symptoms aren't really something we might consider good social conversation I found over time that if I put a humorous spin on IBD and the things associated with it - I don't drink alcohol (I'm now a cheap date), I can't eat certain foods, I always know where the nearest bathroom is (I could write a book about the good, the bad, and the ugly of public restrooms), and sometimes I simply need to change or cancel plans at the last minute (if you're going to be my friend you need to be flexible) - it helps others around me to feel comfortable with my situation. The more comfortable I am talking about my condition the easier it is for my friends and family to understand me and to know what to expect from me and why.
Living with a chronic illness isn't always easy nor is it something that any of us would choose if given the choice. But with some effort, good communication, a bit of trial-and-error, and a lot of conviction and belief in our ability to overcome adversity we can all live well despite IBD being a part of our lives.
Published On: December 31, 2007