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UC to J-pouch to Crohn’s

Posted Jan 07 2009 5:08pm

Meet Liz I guess it all started when I was about 15 years old. I had been to my grandmother’s house for a visit, then dance class, then the non-stop vomiting and uncontrollable bloody diarrhea started. I begged my mother to, “please, please not take me to the hospital,” but by the time she was dragging me only by sheer determination to the car (vomit bag in tow), I was too weak, too tired, and too scared to fight. At the ER they gave me fluids, a prescription, and dismissed me a few hours later with “gastroenteritis” or food-poisoning. I missed a week of school.

Cut to a year later. I am now 16. It’s the summer before my junior year of high school. I’m in the basement making a scrapbook for my grandfather for his birthday. I get up to use the restroom and when I stand up there’s blood running down my leg. Several trips to the doctor later, when I’m lying in a hospital bed after my first of many colonoscopies, I am told I have ulcerative colitis. The disease is explained to me, I am given a few prescriptions, and when I am stable, I am released and sent home.

Being a teenager with a bowel disease is not an easy thing. It is embarrassing, but beyond that you are just trying your damnedest to be normal. It requires a lot of effort, and a lot of denial. I don’t think I was ever in remission with my disease. When I learned what Prednisone did to me, what it meant for me, I lied to my doctors about my symptoms to avoid taking even more. Once a pretty, tiny dancer, I’d ballooned up thanks to the steroids. I didn’t feel like myself and I didn’t look like myself. I began getting acne from the drug, and there was always, always blood in the toilet. It was this way for years. I was a dance teacher. The drugs and the disease began affecting my abilities and my passion. Now, I’m sure I was depressed, but too much in “fight or flight” mode for the emotion to register.

When I went off to college, I had regained determination. I had a 4.0 my first year, but I went out very little with my friends. I just didn’t have the energy for it on top of everything else. Sharing a bathroom with all the girls on my dorm floor was tough too, but I did it. My sophomore year in college, my health worsened. I was seeing a new gastroenterologist, on new medicines, basically maxed-out on a version of every drug available for UC at the time, and I was still sick. I went to the bathroom roughly 30 times a day, maybe more. There was always blood. It had become my new norm. That, and the excruciating pain that I described as writhing, twisting, cutting pains. I would literally double over sometimes because it felt like someone was stabbing me with a knife in the abdomen. It got to the point that I could hardly leave my apartment, or get out of bed. I was so weak from blood loss, fatigued from the inflammation, depressed from the disease, and what my “life” had become. I thought about suicide as the only way to escape the pain and suffering, but I knew I’d never do it. I didn’t want to die. I wanted to live again. I began to pray because I literally did not know what else to do. For about one month, God gave me rest. I went into an unexplained remission for the first time since my diagnosis and it was amazing because it gave me the perspective I so desperately needed. When my symptoms returned a fast and furious as ever, I decided it was time to think about surgery and get that horrible, diseased colon out of my body.

I maintain that it is the best thing I’ve done health-wise for myself. I felt immediately better, and although I had some complications throughout the next two “J-pouch” surgeries, I was so pleased with the results.

After more complications, my surgeon and new GI discovered that I had Crohn’s. I thought my world would come crashing down because for years my mantra had been, “Well, at least it’s not Crohn’s.” Yet, in hearing those words, “You have Crohn’s disease” and realizing that I’d had it all along, I stopped living in fear of “what if” or “what could” and realized that it didn’t really matter what I had or what it was called as long as I felt okay today. I’ve since had more up and downs and more surgeries, but I’m still better than I’ve been in years. Living with a chronic auto-immune disease is not easy. If you don’t have a paranoid personality, it will teach you to have one. My great, supportive friends and family have gotten me through it; so has my new-found faith. Having a J-pouch with Crohn’s is a daily battle. I know how important it is to be forthcoming with my doctors, to be aware of my physical and mental health, and to be an advocate for these diseases. I am on more medications than I can count, but I don’t mind. They help me to live a more normal life. I try to take it day-to-day, count my blessings, and live each day to the fullest, because all any of us have are sweet moments. Of course, sometimes I am bitter, cynical, and you will probably see that come out from time-to-time on this blog. Overall I am just grateful to have the chance to make a difference in this world and be a voice for those with IBD. Thanks to Mark & Megan for setting up this great blog and for giving me this opportunity.

Blessings,
Liz

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