How I Learned to Live With Ulcerative Colitis: From Hiding It to Owning It
Allow myself to introduce myself: Hi, I'm Jackie Zimmerman, and I am a new blogger here at HealthCentral as of 2014. I am, however, not new to living with ulcerative colitis (UC) and now with my J-pouch.
My UC diagnosis
I was diagnosed with UC in May 2009 after a very painful and very awake flexible sigmoidoscopy. I remember my GI at the time patting me on the shoulder while I was still lying on the table and saying, "Don't worry, it's just colitis."
So, I didn't worry. I didn't tell anyone either. In fact, I was so mortified at the prospect of having a butt disease that I didn't even tell my parents. I told no one and lived with the reality and fear completely on my own. It wasn't until I ended up in the hospital for a week that I finally told my family and friends that I, indeed, did have ulcerative colitis. I made my parents swear not to tell my other family members or their friends. I mean, could you imagine? Everyone talking about my butt and feeling sorry for me. I wanted no part of that, so I made them promise they would continue to lie for me and cover up my hospital stays, which were becoming very frequent. I even made up an elaborate vacation story about a tropical beach so that my grandparents wouldn't know I was actually laid up in a hospital bed for yet another week.
As my ER visits increased and my hospital stays got longer, it was time to talk with my doctors about a more aggressive treatment. Up until this point, I had been on Asacol, but had a nasty reaction to it. And by nasty reaction, I mean a pericarditis that resulted in emergency surgery to drain the fluid around my heart. I spent a week in the cardiac ICU recovering from that one.
After Asacol came the 6-MP and later Methotrexate, all while being on high-dose steroids. Nothing worked. Biologics were not an option for me because in addition to UC, I also have multiple sclerosis (MS). For MS patients, biologics can cause MS attacks, so Remicade and Humira weren't even an option for me. It was time to talk surgery.
I was very hesitant about meeting with a surgeon. After all, I wasn't really going to need surgery, was I? At the time, it just seemed like a precautionary measure, like, everyone meets with a surgeon, right? Wrong. When I met with the surgeon, he told me it wasn't a matter of "if" I would need surgery, it was "when." He also said I could either choose my surgery date and go in prepared or run the risk of having emergency surgery and not knowing the outcome. This was my wake-up call.
There was no hiding it anymore; I was sick. Really sick. And I needed to do something about it.
After I left the office that day, I drove home with my mom. We spent the four-hour car ride talking pros and cons, weighing the options, all the while knowing that I didn't really have any options left.
Within a week of that original appointment, I called and scheduled the first of what would turn into four surgeries on the path to a J-pouch. I had a lot of complications along the way, a lot of things go wrong that "shouldn't" have gone wrong, and there were a lot of tears. Oh man, were there tears. But I wouldn't change anything.
Where I am today
Today, I live a happy and healthy life with my two dogs and my J-pouch. My J-pouch will have its third birthday in June 2014, and every year I celebrate that day as if it were my own birthday.
Along this path, I have found people who have become my family and also helped to create support and education for others who are in similar situations with inflammatory bowel disease (IBD) or ostomies. I chronicled my journey on my own blog, and I found blogging to be the ultimate catharsis. I was fortunate enough to meet other IBD bloggers and create very strong friendships with them — friendships that later resulted in the creation of Girls With Guts, an organization I founded to support women and children with IBD and ostomies.
When I look back on the last three and a half years, I can see how far I've come and how much I've grown, but most importantly, how much I've changed. I would not change a thing. With all the hospitalizations, surgeries, ER visits, medical bills, and everything else that has come my way, UC has made me into a person I am proud to be. My work with Girls With Guts is changing lives, and I would never have been able to partake in that joy without having UC. Believe it or not, I think that having UC has given me a purpose on this earth. And that, my friends, is a beautiful thing.
I look forward to sharing more of my story with you in the future and also learning more about you!
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