Lavery-log

Published in today’s issue of MTSU Sidelines:

I’ve already memorized each poster on the wall of this doctor’s office.

I know the one with the detailed picture of the gastrointestinal track like the back of my hand.

Liver. Gallbladder. Pancreatic duct. Transverse colon. Ileum.

I’ve already pointed out each disorder on the poster that I suffer from. Already stood up close to look at the images of strange bumps, ulceric wounds. Already pointed out each one that I have.

A breeze is hitting the window. The colors outside are just starting to turn green with early signs of spring. The people walking throughout Nashville’s Hillsboro Village look happy, energized by the budding warm weather.

But in this room, the air conditioner is turned down perpetually too low. Aside from a lonely, sophomoric painting of a sailboat, the room is drab. Everything is a putrid shade of cream.

And all there is to do is wait.

This visit to the Vanderbilt Digestive Disease Center isn’t out of the ordinary. It’s a new doctor, one whom I’ve only met a handful of times after growing too old for the pediatric wing.

But I’ve grown so used to the waiting, the bad news, the pleas to try this new medicine or join that new medical research study. I’ve become so inured to it that these visits barely make me nervous.

My mom sits next to me, her eyes slowly closing and opening, her hands folded politely on her lap.

She’s used to all this, too.

The quiet hum of the sterilized hallways, the intermittent yelps from patients who just had some blood drawn, the hurried footsteps of doctors and nurses walking past the door-the sounds almost feel like home.

My doctor finally walks in, a nurse trailing behind him. He’s carrying a folder of my records, images from my colonoscopy the week before.

I barely remember what he told me after that procedure. Trying to fight off the remnants of sedation, I struggled to listen to his words.

Something about strictures-things are worse-couldn’t even finish-steps need to be taken-bad, bad, bad.

Maybe it’s just that I’ve had this disease for so long I’ve forgotten what it’s like to feel normal. Maybe I’ve forgotten how to feel pain. Because I don’t, at the moment, feel all that terrible. I’ve felt worse. Things could always be worse.

I wasn’t expecting it at all.

My mom and I were even smiling, joking about how hungry we were, where we were going to go out for lunch after the appointment.

But the doctor’s not smiling.

After taking a deep breath, he looks so squarely into my eyes that I can’t help but look down.

“Sarah,” he tells me, “you need an ostomy. Now.”

• • • • • •

I was diagnosed with Crohn’s disease when I was 10 years old. I wasn’t getting any taller or gaining any weight. My stomach pain was becoming intolerable.

My family knew something was wrong.

We chose to ignore my Murfreesboro pediatrician-the one who said I was just being dramatic.

Several intrusive tests later, I was given a more concrete answer.

Crohn’s disease-named after Dr. Burrill B. Crohn, the Mount Sinai Hospital physician who pinpointed the effects of the disease-is a chronic disorder that causes inflammation of the digestive or gastrointestinal tract. Crohn’s and a related disease, ulcerative colitis, are the two main disease categories that belong to a larger group of illnesses called inflammatory bowel disease.

I have both.

Both illnesses have one strong feature in common: They are marked by an abnormal response by the body’s immune system. The immune system comprises various cells and proteins, which normally protect the body from infection. But in people with Crohn’s disease, the immune system reacts inappropriately.

Researchers believe that the immune system mistakes microbes, such as bacteria that are normally found in the intestines, for foreign or invading substances. The intestines launch an ongoing attack-and in the process, the body sends white blood cells into the lining of the intestines, where they produce chronic inflammation.

Because Crohn’s is a chronic disease, sufferers go through periods during which the disease flares up. These episodes are followed by times of remission-periods in which symptoms disappear or decrease and good health returns.

In the worst cases, Crohn’s and colitis can result in the need for ostomy surgery, in which entire parts of the intestine or colon are removed-in my case, I was told, permanently.

A small bag is put on the outside of the skin to function as the colon. It has to be emptied every few hours.

For some, such a surgery is a lifesaver. Most learn to live full, normal, happy lives with an ostomy bag.

But I’d rather survey my options.

And although considerable progress has been made in IBD research, investigators still don’t know the cause. Studies indicate that the inflammation in IBD involves a complex interaction of factors: the genes the person has inherited, the immune system and something in the environment.

Maybe I got it because my mother’s sister had ulcerative colitis and my dad’s father had Crohn’s disease. Maybe I got it because I am an American Jew of European descent, an ethnic group that is four to five times more likely to develop IBD than the general population.

But I’ve never spent too much time trying to figure out why I got this disease. I’ve been too busy trying to figure out how to conquer it.

Crohn’s sufferers are everywhere. They’re hidden behind whispers and discomfiture. It’s a disease that a lot of people feel ashamed to claim as their own.

My good friends all know about my health problems, of course. Colleagues eventually find out.

And then there are acquaintances, people you feel squeamish admitting your health problems to. Teachers. Employers. Boyfriends.

And strangers-the ones who don’t need to know.

Take, for example, family acquaintances-people who, much to my humiliation, often get an earful about my disease.

I was visiting my mom at work a few weeks ago when she decided to tell a colleague about my impending ostomy surgery.

Just as my cheeks promptly turned a bright shade of red, the woman proudly lifted up the bottom of her shirt to reveal an ostomy bag.

Like her, I’m tired of feeling embarrassed. Or ashamed.

• • • • • •

The starchy, hospital bed sheets feel like sandpaper against my skin. I’m no stranger to hospitals, but I am to this one.

I’m in an unfamiliar city-Cleveland, Ohio-surrounded by unfamiliar faces.

They wouldn’t let my mom leave the waiting room. And even at 21 years old, it’s one of those moments where you just don’t want to be alone.

My room divider isn’t completely closed. A woman lies across from me, her stomach moving up and down with deep breaths, her hand clutching her sheet.

I watch a doctor come in and greet her. He asks about her medical history. She tells him she has an ostomy bag because of diverticulosis. High blood pressure. Liver problems. Arthritis.

I’ve been waiting in this recovery room to start my procedure for at least an hour. Waiting is putting my nerves on edge-each second that goes by, each time the thin room divider rustles with a passing doctor, my heart thumps a little louder.

But I’m still waiting.

Back home, my personal physicians have strongly recommended a colostomy surgery. They say my Crohn’s has caused too much damage. There’s really no other choice. A simpler procedure could work, they told me. A surgeon could perform a stricture dilation procedure, gently stretching the many narrowings that proliferate my intestines.

But they decided that my case is too bad. It’s gone too far.

So, in March 2008, I went to the best hospital for gastroenterology in the country, the Cleveland Clinic, for a second opinion. There I was told that I’m not a lost cause. A simpler procedure could be possible.

My new doctor is a native of China, his English riddled with a heavy accent. He doesn’t boggle his words down with flowery sentiment. He simply told me that I’m “too young” for an ostomy and that, while this simpler procedure can be risky, I’m safe with him.

“With other doctors,” he says, “chance of perforation during the procedure is 15 percent. With me, one percent.”

But I have a hard time trusting doctors.

Alone and scared, my thoughts are becoming more and more frenzied. The thought of something going wrong in a city that isn’t my home, the thought of having to return to Vanderbilt, to hear my doctor say, “I told you so,” the thought of emergency surgery, of the knife slipping, of my intestines perforating.

I just want to get it over with. I want to stop waiting.

A nurse finally comes to wheel me away, apologizing for making me stay in the recovery room for so long.

My doctor is already in the room waiting for me. He already has his latex gloves on.

He sees that I’m crying-the waiting really did get to me-and tries to ease my fears.

“I’ve already done three of these procedures today,” he says.

I ask him what’s the worst that can happen.

My intestines could perforate, he says. Then they would take me to emergency surgery.

“But only one percent. One percent.”

As he speaks, another doctor injects me with sedation. My eyelids get heavy. My body gets heavier. I can feel myself falling asleep, but I try to fight it. I’m too nervous. I want to be awake if something goes wrong.

My doctor back home told me this simpler procedure was nearly impossible for someone like me. The strictures were too severe.

I can hear a radio playing. The doctor and nurses are listening to Coldplay.

I stop for a moment, barely awake, to think how odd it is that Coldplay is going to be the background music for something so terrifying.

And then-all I see is black.

• • • • • •

I’m staring at the same poster of the gastrointestinal tract in my doctor’s Vanderbilt office. Waiting… waiting… waiting…

My stomach growls. I stand up, walk to one side of the room, lie down on the examination table. Stand back up. Read a flyer about a medical research study.

Waiting… waiting… waiting…

The procedure in Cleveland couldn’t have gone better. My strictures have been temporarily widened. I will have to go back in three months to do the procedure over again-and every three months after that, indefinitely, until a better option becomes available or it stops working.

But, for now, I’ve staved off getting an ostomy bag.

Aside from the persistent rumblings coming from my stomach, my gut hasn’t felt this at ease in years.

That trip to Cleveland for a second opinion made me feel somehow guilty. My doctor at Vanderbilt told me I needed an ostomy. He told me that the stricture dilation procedure wouldn’t work.

But I found someone who disagreed.

I’m not nervous about impending bad news. After all, there’s nothing my doctor can tell me, when he finally decides to open that door, that can undo what the doctors at the Cleveland Clinic already did.

I just don’t want to be the one to tell him. Doctors don’t like to hear that they might have been wrong.

Someday, I might have to get an ostomy surgery. If so, I hope I could learn to live with it, just like I’m learning to live with Crohn’s.

But that’s not going to happen today.

For now, I’m just seeing how many times I can make a full circle in my doctor’s swivel chair without touching my feet to the ground.

Then the door slowly opens, and my doctor takes a seat front of me. He says that I look great. Healthy.

I have a tendency to ramble when I get nervous. I mumble something about the upcoming presidential election, about the traffic, the unseasonably cold weather.

Then I tell him about Cleveland.

“Well,” he says, his eyebrows furrowing, “it’s a shame you had to go all the way out there to do something we could have done here.”

My new medicine, he says, must have improved the strictures enough that the procedure became possible. Because when they last saw me, it just wasn’t.

He scribbles a signature on a prescription pad, a refill for one of my many medications. He wants to see me again in a couple of months to determine when I’ll need my next procedure.

I reach out to shake his hand. We’re both forcing smiles.

He’s a good doctor. One of the best in the region.

But at Cleveland, it’s only one percent. One percent.