As I sat across from my gastroenterologist in his private office in July 1998 I felt scared, anxious, and exhausted. Two weeks before I'd had my first colonoscopy after spending months with chronic diarrhea, abdominal cramps, bouts of blood and mucus, and serious weight loss. My doctor was speaking but I didn't really hear him. All I wanted was a diagnosis and a cure.
When he said I had colitis my attention snapped to. We had an answer. Yippeee. I felt relieved. It had never occurred to me before that I'd be happy to be given a medical diagnosis. But I felt that the diagnosis would be the way to making things better.
By the time I left my doctor's office I felt defeated. He had no magical cure for me. He couldn't even tell me what caused IBD or how to make it better. All I had were two prescriptions, one for Asacol - a drug that would help with the inflammation inside my colon and hopefully help the symptoms subside, and another for Bentyl - an anti-spasmodic to help with the abdominal cramps.
I went home, took my prescriptions, and still spent most of my days and nights pooping and living with debilitating cramps. I didn't eat much because doing so simply made my symptoms worse. I had quit working by this point and spent most of my time going between the futon bed in our guest bedroom and the bathroom. I liked laying on the futon because it was lower to the ground and took less effort to get into and out of than our taller queen sized bed - when the cramps really took hold I found sitting and standing nearly impossible and the futon allowed me to roll in and out of bed with little effort. Most nights I would end up napping on the bathroom floor in-between bouts of diarrhea because it took less energy than going back and forth to bed.
The internet was pretty new at this time but I searched for information and chat rooms. I found one called IBD Sucks! "You bet it does," I thought. Anytime I could muster the energy I would log on and see what other people were saying and doing about their IBD. I never participated in the discussions I just lurked in the background reading what other people had to say. I didn't find too much of it uplifting. Most of the people seemed to be in much the same situation as me. I quit going to the site about a month later after reading one woman's post. Her husband had picked up and left her six months after her IBD diagnosis saying that he just couldn't deal with it anymore. He served her with divorce papers and that was the last she'd heard from him. He would only talk to her through his lawyer. I was devastated to read her post. I'd only been married two years when I was diagnosed and I knew my illness and lack of enthusiasm for life was hard on my husband as well as me.