Ross's Story

Ross, age 17

Hi, my name is Ross Maltz and I am seventeen years old. I was diagnosed with Crohn's Disease when I was eleven years old. At that time I was five foot 2 and was the tallest in my class. I loved to play every sport.

When I was diagnosed with Crohn's Disease I had to go through many tests. My doctor started me on a steroid called Prednisone. This steroid made me eat and eat. I gained a lot of weight and my checks became very puffy. The extra weight I gained was good, but the steroids prevented me from growing. All my friends started to become taller than me.

My doctor tried to get me off Prednisone, but every time I went down on the dosage, I got sick again. We then tried to add different medicines to help me get me off Prednisone. But I had no luck.

After being hospitalized numerous times in 97, we decided I had no other medicines to try. My last option was surgery. I was fourteen when I had surgery. I lost half of my summer vacation. They took out a foot of intestine. I was in the hospital for a week after surgery. When I went home, I could hardly walk. After being home about a week, I woke up one night in extreme pain. I didn't know what this was. I became very scared because I had never felt this kind of pain before. We thought it was caused by kidney stones, but it was not that. The stitches inside of me had opened up. The only way to fix it was to go for surgery again. After a few days of tests the doctors determined the intestines resealed and I avoided surgery. This was a very scary time for me.

"After 6 weeks the pain came back. It would come back all of a sudden, and it would feel like a ton of bricks hit me.

Before I went for surgery my doctor told me the surgery could help me a lot. He said I could have a chance of going into remission and growing again. But a month after surgery I was sick again. I didn't grow and I was still 5 foot 2 inches.

A year or two down the road scientists came out with a new drug called Remicade; this was the new drug for Crohn's Disease. I heard so many good things about this drug. It could put people in remission for six months. Remicade is an IV infusion treatment. When I went on Remicade I felt great, like a normal teen again. After 6 weeks the pain came back. It would come back all of a sudden, and it would feel like a ton of bricks hit me. My doctor and I felt Remicade was the best option because he wanted me to stay off Prednisone and hopefully grow. I had seven more treatments. For all eight treatments I would feel great for 6 weeks, and then I got sick again.

With the aid of growth hormones, I finally started to grow. Since I was diagnosed, I grew less than an inch in 4 years. I was the tallest kid in my class in 5th grade. In tenth grade, I was the smallest. Now with growth hormones, and no steroids, I grew more then 4 inches in nine months.

The best way for me to describe Crohn's Disease is: it causes diarrhea, stomach pain, and I was unable to gain or keep weight on. If a surgeon would cut a person open with Crohn's Disease it would look like a person took sandpaper to skin and rubbed and rubbed until it bled.

Crohn's Disease is not deadly, but it did change my life. I was very active in sports, but now I hardly have enough energy to play a 20-minute game of basketball. Even today I hear my friends say, "Why are you so small? You were once the tallest in the class?" Every time I hear that I get so mad. People also mistake me for a 13-year-old because I don't look my age. All the medicines prevented me from going into puberty on time. I am just starting to go into the early stages of puberty.

I have been hospitalized 10 times, and unfortunately I know most of the residents, nurses, and Doctors on the pediatric floor. I attend a public high school on Long Island in New York, and I am usually out 30 days a year. Even though I miss 30 days a year, I am still able to catch up. I am in 3 advanced placement classes and 2 honor classes.

Crohn's Disease did do some positive things in my life, I think I matured a lot faster. My goal is to help other people that have Crohn's Disease. That is why I have volunteered over 200 hours of service in raising money for a organization that helps kids who have Crohn's Disease. My life time goal is to become Dr. Maltz. I want to be a gastroenterologist just like my Doctor.

My daily routine on Sunday is: I wake up and go downstairs, take four pills at breakfast, and then 3 more pills at dinnertime, at bedtime I take five more pills. I then give myself two shots: one of growth hormone, and another of Methotrexate. I then have to place a Nasogastric feeding tube in myself, I hook myself up with the fluid and I go to sleep while I get over 1000 calories.

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