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Gideon, age 1 [1985]

I was never a very healthy boy. In fact, at just a few days old, I had trouble taking in my mother's milk, because mouth ulcers swarmed my mouth.

When I was just two years of age, medical complications caused me to have a blood transfusion. Up until ag

e 5, I had frequent infections, very little to no weight gain, and I continued to incur medical challenges. Early on, my diagnosis was Béchets Syndrome--a chronic blood disorder associated with inflammation of veins, mouth ulcers, eye inflammation, etc. My bowel was never stable, but evidence to rule out Crohn's was never thoroughly really looked into until later on.

The clearest memory of my medical endeavors goes back to 4th grade. I remember I had Cheerios for breakfast one morning. I came into school at 8 AM, and just a few minutes later, I literally threw-up every last Cheerio all over the floor. My bowel problems from there only got worse.

In 5th grade, I went to the nurse's office because of a classic "stomach ache." "Mrs. Sofer," the nurse said "your son is literally crouched down right in front of me holding his stomach." And that was a fact.

The summer of 1996 was a turning point in my life. I can remember constant stomach discomfort while at sleep away camp. I complained frequently but got very little answers. That "minor" abdominal discomfort was actually a sign that something quite serious was going on. After a week in the infirmary and loosing substantial weight, it was time to go home. I returned home and rested, and then felt "able" to go back to sleep-away camp for the last few days to say good-bye to everyone.

A school shot of Gideon before his initial Crohn's diagnosis [1996]

I came back home to regular life that Fall. The same abdominal pain continued through those months, and then in November of 1996, I couldn't take it anymore. The sharpest pain you could possibly imagine ripped throughout my abdominal area, and I could barely sleep, eat, or even drink. I then went to see a gastroenterologist (GI).

At 45 pounds, and a ghostlike look on my face, my GI admitted me to the hospital immediately...and this was only the beginning.

My first hospitalization in November of '96 was perhaps one of the most vigorous challenges in my life, both mentally and physically.

I can first remember coming into my hospital room with the white sheets and everything. I just made it into the adolescent unit (because I was 12), and that made me feel a little grown-up at the time. One of the very first things I did when I got to my room was take a nap. I got up and my doctor came in and explained who he was and what he was going to do for me. My mom and I agreed, while all three of us acknowledge my desperate need to find some answers.

The first few test were cake. Come on, a needle? Eh, it was nothing. I knew that I was sick, and in a sense, I was motivated to take on more challenges to help the greater one. So I took a trip with escort to special procedures to get my "pik" line--a central IV which sits over the heart. I was told that because the doctors had expected me to be in for a little more than a few days, I should probably get a long-term IV for nutrition, blood work, etc. They even told me that if I got a Pik line, I wouldn't have to be "stuck" each time the phlebotomists (lab techs) needed blood from me...they could easily take it directly from the line. I agreed to that one with a passion.

I then started to get a sense of what was going on. They needed to find out what was wrong with me, yes, but this meant every test in the textbook to grab a conclusion.

One of the first test, a CAT Scan, wasn't so bad. They gave me this red-looking fruit punch to drink before hand. I took one sip and decided that I needed to down that stuff and get it over with. I told the CAT techs they should try to work on that flavor. Once I got in there, their requests were legitimate: "Hold still. OK, release. Good job." So far, I did think I was doing quite a good job with everything.

Next came the enema. OK, this one was tough. The X-ray tech gave me this white fluid to drink. This one was more of a cocktail than the other one...only problem: it tasted worse. I threw it up once or twice before actually keeping it down.

The docs were in no rush to get me home. My weight was horrifically low, and I still looked (and was) extremely malnourished.

Severe inflammation, scar tissue, and large amounts of blood swarmed Gideon's lower bowel [Click to enlarge]

Then it was time for the big one. The biggest test of 'em all. It was time to "go in." They call them "scopes." What they do is stick a microscope into your intestines to see what is cooking down there. When the scope is inserted by mouth, they call it an endoscopy. When it's the other direction (up the butt), it's called an colonoscopy. I had both. My doctor promised Kodak quality prints afterwards--an incentive to go ahead with it--and hey, it worked, I was happy. But the results didn't show any positive signs in my bowel; in fact, it was quite the contrary.

Dark, red, bloody scar tissue was visible in bowel. The madness of the intestines resulted in a narrowing the size of a pin hole (right). This picture (magnified) represents the full-blown stricture (narrowing) which was the size of a pin hole located in my small bowel. The immense amount of scar tissue and blood surrounded the area.

It was then time to figure out how to fix this thing. The only sensible thing to do was take some pills before I would take further steps. Those pills were steroids, and I took a lot of it. At the same time, I needed bowel rest. Which meant: no food, no drinks, no nothing by mouth. I was only permitted to have my Pik nutrition, and that was it.

One day during the end of that hospitalization, I just couldn't take it anymore. My stomach pain had eased, but that wasn't enough to satisfy me. People were sticking things down my throat, up my butt, right and left. I went through probably every test in the textbook. I visited practically every room in the X-ray department, and I was tired. I was on stomach rest for nearly two weeks, and I sat in my hospital bed watching all of those luscious McDonalds commercials flash on the Television screen every 30 seconds...and right then and there I said "Rosa, I can't take it anymore." I know I had experienced one of the biggest challenges of my life right at that very moment.

Rosa, one of the adolescent nurses came in to comfort me that day when I burst into tears over not being able to eat, and just about everything else. After I told her where I was coming from, she even had tears in her eyes.

Gideon, managing to get a laugh in during his initial Crohn's hospitalization

I couldn't have been more grateful for the outstanding nurses on that unit. Anytime I would want to cop out of something, take pills later, or even when I was frustrated with what was happening to me, I had Rosa, "Mean" Jean, or some other great nurse to come in and comfort or joke with me. They reminded me to keep my focus on life, and not the disease.

As I started to feel more energetic and healthier, I was able to function a little bit more. I took the opportunities I had to ask my doctors all about Crohn's. The only problem: they didn't know too much about the condition. They weren't dumb doctors or anything, but they just didn't sound certain about most of the information they were giving me. "What is causing this disease?" "Why were my intestines directly affected by the disease?" "How did it progress to this point?" "Why were my 'warning signs' ignored by previous doctors?" Only questions, questions, and more questions, many of which brought very few answers.

I thought to myself "What is Crohn's?" I'd heard of Asthma, Diabetes, Cancer, and AIDS before, but what in the world was "Crohn's?" Furthermore, I thought to myself: "Why don't the doctors really know what this disease is all about?" ..."and how is it that so many people have it, yet there is such little awareness amongst physicians, my friends, family, etc.?" I was very, very tired one night when thinking of all of this. As I drifted off to sleep, I thought about my stamp collection. As my mind drifted to my stamp collection, I thought about the Breast Cancer, HIV, and other awareness stamps that had been issued. I thought to myself at that very moment: "Maybe one day, there could be a Crohn's stamp..." ...and then, in the midst of all of the emergency Code calls on the PA system: total blackness.

I left the hospital right before the holidays, and I said farewell to everyone there. I took

Gideon with his very special, humorous nurse, "Mean" Jean

some photo opportunities with all of the wonderful nurses who had helped me physically and spiritually. I had come into that hospital with one question, and I came out with one answer: Crohn's Disease.

With Crohn's as the conclusion, and I was told to hope that the steroids would do the job of taming and reducing the scar tissue. They didn't. I took all of my pills, tons of them, but that didn't cut it. I started to use a Nasal Gastric (NG) tube as I came home. An NG tube is a thin tube which is inserted in one's nose. It then runs through their throat, and dips into the entrance of the stomach. Nutritional supplements were passed through the tube nightly to help beef me up before my surgical procedure. My mom and sister called me "elephant nose" whenever I had the tube inserted.

Surgery was the only reasonable option to seek to remove that horrific scar tissue in my lower bowel; I agreed. They did just that: a resection of 11CM of my Terminal Ileum, in my lower bowel in January of 1997.

I took on this challenge like no other. I knew what was I was about to have performed on me. I knew that the surgeons were about to cut my belly open to take out some of my guts. But that's all that I was full of before the surgery: guts. I didn't stop for a second to worry about having to have surgery. I went into this challenge like a bull.

The first memory I have after the surgery was pressing my morphine button. I woke up rather cranky, and my belly was as sore as can be. I drifted right back off to sleep, and allowed my body to rest. Just a few days later, I was up walking. I took small steps at first, not wanting to hurt my belly area. I felt frail and strong. I felt like part of my body was removed, yet my spirits never died.

About 6 days after my surgery, I was making enormous progress. I was walking around the adolescent unit like I was walking a walk-a-thon. Dr. Price, my surgeon, came in to tell me that it was time to eat, BUT, if and only if I made a bowel movement. Frantically excited, I started pacing around the unit. I got tired pretty easily, but I just kept going. I just kept moving my body until I had to go; and I finally did.

After 8 days, I left the hospital to return home. Full recovery took about two months.

I tried my best to put my life back together to where I had left off last. I rejoined my basketball team, and I can remember that we were the champions that year. I remember playing in the final championship game and making all of my all of my foul shots! I eventually made it back to school as well. Carrying books was difficult at first, but then I was even able to do that. Getting out of bed, I can remember, was enough to satisfy me at the time. After all that I had been through, I didn't want anything else but to be a healthy boy.

During the Summer of 1997, I started Growth Hormone treatment. At the time, I wasn't that disappointed over having yet another drug addition. The only great challenge in taking Growth Hormone was the fact that I had to inject it into my fatty areas once a day; similar shots to what a Diabetic takes. It took a good while getting used to--but my "needle" experiences during my prior hospitalizations made me an even stronger person, and then theses needles were cake.

In the Fall of 1997, my mouth ulcers got so bad that I stopped eating and drinking altogether. Persistent, nonstop pain ripped through my lips to my tongue, to my cheeks to my throat. Forget about eating, even sleeping was a chore, yet it was a goal. I wanted to pass the time because of all the pain I was experiencing, but I'd just wake up gagging on my own saliva because I was in so much pain. My mother took me to the ER, and the other suitable thing for me to drink there was Gingerale. Soda helped relieve some of the agony. I was admitted for IV nutrition for approximately 3 weeks that Fall, desperately trying to get back on the weight chart.

I remember something really cool about that particular hospitalization. I was always very excited when the emergency helicopter came overhead to land on the heliport...they called these "Code 40's, by air." One evening my mom kissed me goodnight, and right before she left I heard the PA system read "Code 40, by air, 10 minutes." I literally begged my mom to take me up to see the helicopter. She finally agreed, and I rushed to the nurses station to ask permission to go up to the eighth floor tower; they agreed. I took my camera, and I can just remember being emphatically excited. Soonafter we got up there, we heard the copter flying near, and it landed right in front of our eyes. When they took the MVA (motor vehicle accident) patient out of the copter, I tried not to look out of respect. I then waited to see if they'd take off after they brought the patient to the ER. But they didn't. The elevator made a bell sound, and the pilot walked right through the doors. He asked me if I had wanted to go see the copter, and my face lit up.

Gideon (in green) standing on top of the world while exploring the emergency helicopter

Going on to the heliport was one of the most beautiful experiences in my life. I could see all of New Brunswick lit up at night, while the brisk air brushed against me. --Mom got worried and handed me her jacket...afterall, it was winter--I went into the control room and saw all the awesome gadgets that the pilot had to use to fly the copter. He asked if I wanted to see the blood bath, and I passed. I was receiving nutrition through my NG tube at the time, and I didn't want to make more of a mess than there already was. I then went back inside and mom took me back to bed, but not before I shared all of the news with my nurses. That night I slept better than I had in weeks.

It was exactly one year later in 1998 that I was readmitted to the hospital for the same reason: mouth ulcers. I had been on steroids for two years then, and never really stopped them. I got down to 5mg (a very low dose) after my surgery, and that was the closest I got to discontinuing the drug. Every time I tried to discontinue the steroids, my ulcers would return instantly. This hospitalization was only a duplication of last year's experience. It was the same thing all over again.

The Summer of 1999 came right before my eyes, and so did the persistent problem of my disease not going into a remission. I tried to slowly discontinue the steroids, but my body was just too dependent; I had to look into trial drugs. I agreed to start to start this one drug called Thalidomide. This drug has a poor reputation from the 60's when it causes major debilitating birth defects. Nevertheless, medical reports showed that it had a significant impact on eliminating lesions. After signing papers that I would not engage in sexual intercourse, I was ready to go.

It must of been a miracle. Within a few weeks of treatment, my mouth was completely ulcer-free. I felt one of the side-effects of the drug, which was severe fatigue. But I was ready to take any side-effect in exchange for my ulcers to be gone...and I did, for many months thereafter, I was finally, for the first time in my life, able to taste the luscious pulp in Orange Juice, and the juicy meat in gyros.

It was then December of 1999 that I caught pneumonia. I was at home for 10 days before realizing the severity of what I had. I was immediately admitted to the hospital for IV antibiotics. I was literally knocked out with chills, sweats, and phlegm for two weeks. The doctors had trouble taming my fever, and at one point, my fever hadn't dropped for nearly 20 days, and I was nearly admitted to the Pediatric Intensive Care Unit. Luckily, the very next day, my fever finally broke. Soonafter, I was strong enough to go back home for the holidays.

Through my entire bout with pneumonia, I did not get another ulcer back in my mouth. This was more than amazing. Every single time I'd catch a cold in the past, I would get a whole round of ulcers all over again--just a simple cold would have the ability to set off all sorts of complications. But the drug held me through, and man was I grateful.

Soon after my recovery and the new year, I had made a pledge to myself to get a move on my childhood dream. I knew where I was in life. I knew how much my life was in jeopardy. I knew how much pain I'd continue to experience each day. More importantly, I knew how many other people just like me with IBD were going through the same exact thing. Without hesitation, I immediately started my fight for a US Postage Stamp to raise awareness of Inflammatory Bowel Disease.

A few months passed and I finally heard back from one of the people I wrote: Robert Torricelli, my Senator. He wrote a full-page letter expressing his support for the awareness stamp, and said to contact him back if he could help. Two weeks later, Frank Lautenberg, my other Senator, responded. He too said that he supported this idea. About a month later, I contacted my local Congressman's office to see if had received my letter. They did, but they had misplaced my file. They found it, and said that they'd reply asap...and they did.

A full page letter to myself and the Postal Service arrived in my mailbox the next week. Congressman Frank Pallone Jr., said that not only did he support this idea, but that he wanted to help. He asked me if I wanted to introduce US legislation to the House and Senate to put pressure on the Stamps Committee to approve it. But he also mentioned one minor detail: He wanted me to write it.

I can remember that was one of the happiest days of my life. I wasted no time and decided that this was going to become a Campaign. "The Inflammatory Bowel Disease Stamp Campaign" was the first name that came to mind. I stuck with it, and contacted local media sources to get some support for the Campaign. Undoubtedly, I knew that this Campaign was going to grow into something really special.

April: 2000. One night I had trouble sleeping, and I felt tremendous "shocks" in my feet. I contacted my doctor the very next day, and he told me that I was experiencing another side-effect of the Thalidomide that would have to terminate my taking the drug. I was soon to find out that my feet were 50% numb, and that information came at just the wrong time. I was unable to function without the drug, and I landed myself in the hospital yet again after a week of loose stools. This was the first time of my life that I had experienced such joy while encountering more severe medical challenges.

Against my will, I was put back on steroids, and I knew that meant trouble later on, but I had no other choice. Nevertheless, I used the time to my benefit. I had started to make my initial plans for lifting my Campaign off the ground.

After I got back home, I launched a preview website (geocities.com/ibdcure), and I contacted my local newspaper. I decided that I'd wanted to show the Postal Service that it wasn't only me who wanted to see this kind of stamp, but that many other people would support the cause. I started to collect signatures and hand out information on IBD. I even made little Campaign cards on card stock right from my iMac. In late Spring, my Campaign was officially in full swing.

Summer was about to break, and a surprise arrived in my mailbox. The Postal Service's Stamps Committee had sent me some different this time. They didn't send me a regular rejection letter explaining that the Postal Service didn't have any intentions to issue and IBD Stamp. They said that they were currently researching the topic. So I replied, explaining that I wanted to assist them with their research. That was even more great news.

Summer broke, and I went on a volunteering mission in New York. I was able to do some small Campaigning there. I then took a vacation to California, and told some more people about my mission. I then went to the Exploration Senior Program, and led a lecture session on my life with CD and the Stamp Campaign. By Summer's end I had crashed, and as I knew it, the steroids drove me into a dead-end.

I needed to figure out what else was available for me to use drug wise, and I knew that there wasn't a wide selection of drugs left to use. I decided to use Remicade, which was only the first drug approved for the use in Crohn's in nearly 30 years. The fact that there had been no drugs approved by the FDA in over 30 years disturbed me quite a bit. My reality of not having any drugs to use after this last option only increased my motivation to get this stamp passed.

After receiving two treatments, I started to respond. I started the school year on homeschooling, a different strategy than before. The treatments lasted until through the Fall of 2000. In October of 2000, I attended and spoke at a Child Health Event at my local hospital. I met Ted Kennedy Jr. and Frank Pallone Jr. for the first time. Mr. Pallone awarded me a US House of Representatives community service award at the ceremony. That day was a great, great day.

The new year rolled around, and I needed to be scoped again. I had some symptoms throughout

Gideon's intestines showing minimal inflammation [Click to enlarge]

December, and was very fatigued. It was time to go in and see what was going on.

Everything in my intestines looked relatively good. January of 2001 held up quite fine, but February did not.

I was admitted to the hospital for a severe infection in my skull. I went to the ER with my mom @ 3AM, and they admitted me for IV antibiotics. After a week of antibiotics my infection retreated, and I was discharged on Valentine's day.

They strength of the antibiotics had causes my Crohn's to flare-up again, and then, as I knew it, I was in very hot water.

I went for a second opinion, which laid out all of my trial drug options. I had told my mom that I wanted to give alternative medicine a try.

I went to a Chinese herbalist close by, and she created a huge cocktail of herbs for me to take. I learned to cook the herbs with water in a pot for several hours. I then drained it, threw out the herb, and drank the liquid left over. Being that my life was in serious jeopardy at the time, I took the process very seriously.

The first time I drank a cup of the herbal tea while watching Dead Poet's Society on Television. "Cease the day! Cease the day!" And so I did. I downed my first cup of the tea, and I knew that I had accomplished something while doing it, despite the fact that the whole concept had some getting used to.

All 1,594 signatures: bound & sent to the Stamps Committee

In April of 2001, I was awarded a $10,000 college scholarship by a regional radio station and VERIZON Communications for my efforts towards making the world a better place. I was interviewed by the radio station, and gained great support over the NY, NJ, and CT airways. Alex Snyder, a very close friend of mine, had nominated me for the scholarship. At that time, I couldn't have been more grateful for what Alex had done, and more motivated to continue my nonstop crusade to find a cure for Crohn's.

May 2001 was a special month. I had put together all of the signatures collected to-date, and counted 1,594. I sent a bound book, one inch thick (right) to the Stamps Committee. While flipping through page after page after page of signatures, I looked back on my life, and the previous year. I knew that not only did I beat my expectations with a passion, but I knew that the damage had been done. I knew that the approval of the IBD Postage Stamp was in the very near future.

I looked back on my life, and thought about how lucky I was to still be alive...and I made a commitment to myself that as long as I was alive, I would continue to work my heart out to get this stamp passed, and find a cure for Inflammatory Bowel Disease.

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