How I Learned to Live With Ulcerative Colitis: From Hiding It to Owning It

Patient Expert
Jackie Zimmerman

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!

See more helpful articles

What It Means to Be Healthy With IBD

Foods to Avoid With UC

10 Myths About Living With UC