Shira Glogower:
The Wonder in Which We Live

December 2002

November 2003

June 2004

How do you talk about having blood in your poop without sounding crude or like a medical text book? This was one of the many thoughts flying through my head as I suddenly found myself forced to explain to my friends why I'd been missing so much school, why I had to see so many different doctors.

That was my first challenge after being diagnosed, one of the many that have not yet gone away. It's still a question I ponder almost every day. Whenever I meet a new person, I have to quickly make that decision: do I tell them or not? And if I do, then how much? It's not easy. You can't just say, "Oh yeah, I have a chronic disease," and leave it at that. That's like saying "Hi, nice to meet you. I couldn't shower this morning because there was an alligator in my bath tub." I use these excuses to justify my secrecy, but the real reason I don't tell people about my ulcerative colitis is because I just want to be normal.

I remember the day I was diagnosed pretty clearly, even though it was almost two years ago. I already had a pretty good feeling of what was to come before that day. I had gone to see my doctor because I had this extra skin around my anus that was bothering me, and frankly, as I'm sure you're thinking right now—it was gross. She asked me a question my parents now ask every day. Little did I know that this awkward inquiry would become a routine in my new lifestyle.

"Are you having any blood in your stool?"

"Well, yeah."

"For how long?"

"About a month, I guess." Had it been that long? Longer? I couldn't quite remember. I had never told anyone about the blood before. My thirteen-year-old brother, Yoni, had been diagnosed with a serious disease called Ulcerative Colitis the past summer. I spent most of my time helping out around the house and I didn't want to bring up any more problems for my parents to worry about.

After she was done checking me, the doctor called in my mother to discuss what she called "perianal" tags. Apparently, the extra skin that was bothering me was a marker for a disease related to ulcerative colitis, called Crohn's disease. She told my mother that based on my brother's previous diagnosis, the tags, and the blood in my stool, I should be tested for these two diseases. I remember my mother looking up at me in horror. Those eyes said it all, but she added her voice as well in a stunned whisper.

"You've been having blood, and you didn't tell us?" She seemed so hurt. So worried. I didn't know how to answer. I just nodded and looked down, suddenly feeling very guilty. The truth is, I was completely taken aback. I came in to find out what these things on my butt were. I was now leaving with the thoughts of all that my brother had to go through looming over my head. I had never guessed that the two could be related.

My mother and I had met at the doctor's office and now I had to drive the fifteen minutes back home. Alone. I don't know how I made it but I eventually did. Mom pulled into the driveway behind me. My dad was out front mowing the lawn. I went into the kitchen to get some water to drink while my mom explained what the doctor had said, to my dad. He came in and gave me a hug. A hug and two meaningful sentences.

"We'll figure this out. Everything's going to be okay." Looking back now, I can't imagine that hug being awkward, but it was. My dad and I were going through a rough stage. We barely spoke and when we did, it was to fight. I know that hug took a lot of courage but for the road ahead, it was exactly what I needed.

One week later I found myself going to many new doctors. I had to answer all kinds of questions about my poop that I had never considered before: Frequency, urgency, consistency, how much blood, how often there was blood, the color of the blood. Stool samples and blood tests were sent in. And finally, I was prepping for my colonoscopy. "Colonoscopy." I shudder whenever I see or hear that word. The procedure is fine; they put you to sleep for it. The prep, however, is hell. You can't eat solid food twenty-four hours before the test. In addition to not eating, you need to clear out your entire system using laxatives. I had to drink six twenty-liter bottles of Vernors that had a liquid laxative mixed in. They tasted horrible. I spent the night throwing up, pooping, and crying. My mom allowed me a break to take a bath and relax after my third bottle. It took her an hour to coax me out of the bathroom—I had locked myself in to escape the dreadful prep. Late that night my boyfriend of over a year called. He had been cheating on me, and now he wanted to get rid of me.

"Please don't do this to me. I have the tests tomorrow. I really need you now," I said. I was crying and begging. I wanted anything but to go through this alone. He didn't even care.

"See? You're so selfish. All you care about is yourself. I'm done with it all. That's it. It's over." A month later when I was in the hospital, on an all-liquid diet because I couldn't digest food, he didn't come to visit me. Didn't even call.

It was confirmed on October 30, 2002. I had ulcerative colitis. This is an inflammation of the colon, and as of yet there is no cure, only pills. On the day that I was diagnosed, I started on prednisone, a steroid that reduces the inflammation. It did wonders for me. I had been on Vicodin for insufferable cramps in my stomach, but it never really helped me. With the prednisone, I was finally able to get up and move around, go to school, and see my friends. I was on an assortment of other pills as well. Each pill had a part in keeping me healthy and fighting off the inflammation. It was so weird for me. I had a whole new lifestyle now. I had to remember to take my pills three times a day, and realize that I wasn't capable of being like everyone else, doing everything they were able to do.

The prednisone was helping me, but it shortly became what I still see as one of my worst enemies. As I mentioned before, prednisone is a steroid, and all steroids have side effects. Prednisone makes you gain weight, but in a weird way; the weight I put on was only in my face and my stomach. My face was round, like a china doll, and I had to start shopping in the plus sizes for all of my clothes. Before my junior year of high school, when I was diagnosed, I weighed one-hundred-seven pounds. Suddenly, or so it seemed, I was weighing one-hundred-fifty-three. It was a horrible nightmare come true. I was on prednisone for a year, far longer than you are supposed to be. Every time I tried to wean off it, my symptoms would come back and I would be very sick. I finally went off of it for good on Thanksgiving of 2003 and have not taken or needed it since. The weight is slowly shedding and I am returning to my normal figure, but those emotional scars will stay with me forever.

I mentioned before that I could not do the things that most teenagers can do. The ulcerative colitis affects my mood, as well as my energy level. I need to rest very often and some days are just not as good as others. I always need to make sure there is a bathroom nearby and I have to be careful of what I eat. For example, lentils are full of fiber. They make me sick almost immediately. It takes a lot of trial and error to find out what my body can handle. Every day I find new things that do or do not agree with me. It really is a learning process.
I used to get angry with God. I couldn't understand why this has happened to me. I would cry and write in my journal about the unfairness of it all. I don't do that so much anymore. I still get frustrated and upset, but the only way to get through something like this is to keep on moving forward. I understand there is nothing I did to deserve this or bring it upon myself. It's just something that happened to me, something that with the support of my family and friends, I know I can get through.

Within the past two years, I have discovered a lot about myself and developed a new kind of strength that I never knew I possessed. It is amazing looking back and seeing how far I have come, how much I have matured and grown. My family has developed as well. We came together in a time of need and we have all gotten a lot closer. In particular, my relationship with Yoni has blossomed into a wonderful friendship. I thought we had always been close, but looking back now, I see we were not. He is the only one who understands what I am going through, since he has gone through it too. He is a great source of help to me, and I would like to believe that I am to him, as well. We are each others' confidants and I would have it no other way.

Without my ulcerative colitis, who knows what my life would be like today? I am sure, however, that it would all be very different. I'm sure I would be very different. I can't say that I'm glad things turned out this way, or that I wish they hadn't. That is not anything I could, or would even want, to control. I can say one thing though: I was at one stage of my life, I am now at another, and I cannot wait for the next. You never know what will come about, and that is the wonder in which we live.

If you want to contact Shira, you can e-mail her at ColitisGal123@aol.com.