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.
For me, the turning point came a few months after my diagnosis. I had been hospitalized for a bout with viral meningitis. While I was in the hospital they pumped me full of IV antibiotics, just in case it had turned out to be bacterial meningitis, and they had set my IBD symptoms into overdrive. After my release from the hospital I was even weaker, the diarrhea was worse, and I was losing weight at an alarming rate. One afternoon as I crawled from the bathroom back to the futon my husband met me in the hallway and asked how he could help me. "You can take me out back and shoot me," I said, letting the tears that had welled in my eyes spill forth.
I meant what I'd said, if only for the second it took for the words to tumble out of my mouth. My life was no longer my own. I was simply surviving. My days and nights were made up of going to and from the bathroom, battled abdominal pain, and fighting with my waning appetite and weight. But my lack of energy meant I'd barely left my house in months and more than once I had wondered what the purpose of my life had become. But after verbalizing this thought - to have my life end - I felt scared and knew that I had to get control over my health rather than letting it control me.
On the IBD Sucks! web site I had read about something called an elimination diet. I did some research and found the book, Breaking the Vicious Cycle by Elaine Gottschall which not only outlined how you embark on this diet but also gave recipes to help you learn how to cook without wheat, gluten, and dairy. The diet was very strict and took a lot of devotion and determination on my part. But after following the diet for four months I had identified the foods and beverages that caused me problems. Keeping a meticulous food diary had also helped me to realize which foods triggered which symptoms. Preservatives, caffeine, red meat, citrus fruits, melons, raw veggies, alcohol, lettuce, and cow's milk are among the many foods I have forever eliminated from my diet. I knew that most of the authorities on IBD didn't believe that diet affected the symptoms, either positively or negatively, but as I eliminated these trigger foods from my diet I was able to eat more and to begin to feel better. I even gained a few pounds as well as a little more energy. I knew that my work toward a healthier me had only just begun but at least I was spending less time off the couch and out of the bathroom.
[You can read about my whole experience with the elimination diet in my book, Living with IBD & IBS: A Personal Journey of Success. www.ibdandibs.com]
Published On: November 06, 2007