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Elizabeth Roberts:
Living with My DiseaseIn 1998 I got the answer I didn't want, but did. I had Microscopic Colitis. For years, since probably 1980 forward I had been plagued with stomach problems, mainly constipation and debilitating abdominal cramps. I'd seen doctors, had numerous uncomfortable GI tests, and was always told the same thing, "It's stress, just relax." But how could I be under that much stress? I was only 14 at the time. Thankfully as I entered my college years my stomach seemed to settle and I only rarely noticed it over the next fifteen years.
In 1996 I was married. I was 29. The wedding was wonderful, and the first night of our honeymoon on the island of St. Barth's was one I will never forget. A fabulous dinner by the Caribbean ocean, French restaurateurs fawning over our every need, the man I loved by my side, and starting at about 2:00 a.m. five hours spent in our bungalow bathroom with unrelenting diarrhea. Had I eaten something bad? Was it the water? Three days later and six pounds lighter I finally left our island bungalow for the first time. I was scared to leave the vicinity of my bathroom, but it was my honeymoon, I had to try.
The rest of our honeymoon went off without a hitch and my stomach remained relatively problem-free until two years later. Another violent and lengthy bout of diarrhea hit, only this time my stool was surrounded by mucus and bits of blood. Again I was confused, but also really scared as it continued for five days. What was going on? I was hesitant to see a gastroenterologist because of my experiences back in high school. I didn't want to go through oodles of uncomfortable tests just to be told it was stress. Three more bouts of diarrhea later I saw a holistic doctor who tested my stool and my blood -- I was deficient in a number of vitamins so he put me on vitamin therapy. It made the bouts of diarrhea more frequent and worse. I was losing weight at a frightening rate. In six months I had dropped nearly twenty pounds, my 5'6" frame weighed a mere 98 pounds. I looked gross, but felt even worse. I didn't want to eat, spent too much time in the bathroom, and had little to no energy. I called my old gastroenterologist and asked if he could recommend a doctor in my new hometown.
Two months, a couple doctor's visits, and a colonoscopy later I got the answer I'd been looking for but really didn't want -- I had microscopic colitis. The doctor said my colon had looked fine during the colonoscopy but the biopsies they took showed a different story. While it was explained to me that I didn't have ulcerative colitis, like my father did, my treatment would be pretty much the same as for UC patients. I was immediately put on drugs to reduce the inflammation in my GI tract and while I had hope that they would help stabilize things I couldn't help but feel that my life was changed forever, and not in a good way.
Three years later on a Fall evening in 2001, my husband and I sat on the deck of our Lake Tahoe home and watched the blazing orange sun set over the Sierra Nevada mountain range. My husband reminisced about our past four years living at Lake Tahoe. "It's been a big change from Washington, D.C.," he said.
While I listened to his words, my mind whirled through the huge number of changes that had, indeed, entered my life in the past years. The enormity of it hit me all at once. I thought, I'm only 33 years old. I have an incurable colon disease that doctors only somewhat understand. And while I've learned to cope with it pretty well, I have no choice but to live with it, and the awful effects it can bring to my day-to-day life.
My husband asked what I was thinking about.
"Colitis," I told him. "I know I've been living and dealing with the knowledge of my disease for the past three years, but it only just hit me tonight that it will never go away. I'll never be the same person I was before my diagnosis."
"You're right," my husband said a little too matter-of-factly, "You aren't the same person you were before 1998. The past three years have brought huge changes for you, for me, for both of us. And while some days have been harder than others, they haven't all been bad. Think of all you've learned about your disease, your body, you."
I stared at the wood decking beneath my feet and the many, many changes of the past years played through my mind like a slide show.
Urgent, unrelenting diarrhea... Cramps... Fatigue... Confusion... Fear... The elimination diet... The B.R.A.T. diet... Asacol... Lomotil... Acidophillus... Aloe Vera Juice... Learning to relax... Learning to meditate... Learning about Reiki and energy work... Doctors... Nurses... Internet chat rooms... Web sites... Resource books... Alternative medicine magazines... Hours of research about IBD... Learning to know my body and listen to what it needs... Asking for help... Asking for space... Giving myself time to learn about the new me... Learning to accept my new life and who I now am... Realizing my disease doesn't have total control over me unless I allow it to.
I realized my husband was right. I wasn't the same person as before IBD but that wasn't all bad. I'd learned a lot about myself over the past years and now knew better how to deal with the good, the bad, and the ugly of my disease.
It's now yet another four years later and seven years since my diagnosis. I've thought even more about my journey to understand and live with my IBD and have realized that successfully living with my chronic illness entailed working through the five stages of grief -- denial, anger, bargaining, depression, and acceptance. I believe this was an important process for me to go through as it allowed my old self to be replaced with my new, and hopefully, better self. I've learned that an important part of living with my IBD is not to deny myself the opportunity to feel and work through each stage of my emotions while I continue to learn to live with my disease rather than as my disease.
Elizabeth Roberts
ibdauthor@yahoo.com
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