When asked to share my story about CCMC, I decided that it was time to open my heart, and tear down the wall that I had built around myself because of the embarrassing nature of my disease. I decided to do this so that I could help the hospital that saved my life, and to recognize all of the doctors, nurses, and all of the other wonderful people who helped me to get better.
When I was 11 years old, my mother walked by the bathroom one early Monday morning, and heard the sounds that only a victim of ulcerative colitis knows. I knew that my life was about to change when she looked into the bathroom and told me she needed to check things I knew I had been caught, after hiding it for a month. When she saw the blood,her terrified face showed her heart breaking into a million pieces. She knew what was about to happen because she had been through it all 11 years earlier. She called my doctor and by Wednesday night I had an appointment to go to CCMC to meet with Dr. Christopher Justinich on Thursday during his lunch break. My mother had wanted me to go to her doctor, but my pediatrician told her that CCMC was the best place for me. She was right! On Thursday morning at 7 a.m. we received a phone call. It was Dr. Justinich calling to introduce himself, and to assure us that he was going to do his best to help me get well. He also wanted to relieve some of the stress he knew we were all feeling and to see if we needed directions. From that moment on, my mother knew that I would be taken care of in the best place possible.
I was absolutely scared to death going up to CCMC, but as soon as I walked in my fears were lessened. The atmosphere at Connecticut Children's Medical Center is not like any ordinary hospital, you could tell that it was definitely made for the kids and only the kids. When I met Dr. Justinich he made me feel like I was the patient, he talked to me and my parents listened. He brought me on a tour of the procedure room that I would be in, introduced me to the PACU nurses and to Judi, a child life worker, who explained the ropes to me. Friday morning rolled around, and I was back up at CCMC getting ready to go for my very first colonoscopy. I was able to bring my teddy bear Boo into the room with me and my parents were allowed to stay with me until I was asleep. That afternoon I was diagnosed with Indeterminate Ulcerative Colitis, which means that they were 99% sure that I had Ulcerative Colitis and not Chrons Disease. Dr. Justinich allowed me to go to Vermont with my family on Saturday morning, but he called us twice that to see how things were going.That is the type of special care that is found at CCMC . They give you the freedom to do things, but make sure that things are going well. They try to keep life as normal for kids as possible. I was told about the IBD support group and I attended it to see what it was like. I enjoyed it so much that I have been going ever since. The next 6 months was a roller coaster ride for my U.C., I would have my ups and downs, but mostly downs. During this time I had met with psychologist, Dr. Barbara Rzepski, to help me learn relaxation techniques to help control my pain and other side effects of my disease. I was treated with high doses of steroids and other medications, but in late February it got to the point where I needed to go on bed rest, and I was admitted into the hospital for the very first time. My mom had told me from the beginning that if I was hospitalized we could decorate my room with anything I wanted, so I did. I had posters and pictures, and a whole wall dedicated to Jimmy Buffett. This helped me feel more at home while I stayed in the hospital. During this hospitalization, the nurses enjoyed having me there because I wasn't a complainer and I had a basket of jolly ranchers for them to enjoy as a small thank you for taking such good care of me. My room was so warm and friendly and they told me it was a reflection of the person inside. They always made me feel so special. It was during this hospital stay that Mary Welker and I first met. Mary is another Child Life worker, whom is one of the most wonderful people I have ever met. She has stuck by me through my entire illness and has helped me keep my spirits up.
My February stay left me feeling good, but five weeks later on April 9, I was admitted once again. This visit was different,and we were told that surgery needed to be considered or I wouldn't survive. I was bleeding so heavily that my hemoglobin count was 5, compared to a normal 12-year-old's count of 12-14.I had to say the words that I needed to have the surgery. Dr. Justinich, my nurses, and my parents helped me understand my situation so I could make that decision.When I did, I was meeting with Dr. Richard Weiss an hour later. Dr. Weiss and I immediately hit it off, which is a good thing because I have seen much more of him than originally expected. Dr. Weiss told us that my hemoglobin would have to be raised in order to have the surgery to lessen the risks involved. I was having 3 bags of iron a day through my IV, with the hope that my counts would raise. On April 14, I met Eva Wickwire who coordinates the telethon and works at the foundation. She was giving Diane Smith from Channel 8 News a tour of the hospital because she was preparing to be the host of the upcoming telethon . A week had passed and my counts hadn't risen, and I was bleeding too heavily to wait any longer for the surgery. During this week , Mary helped to prepare me for surgery and Bitty McCormick taught me how to take care of the ileostomy that I would be left with. Bitty is Dr. Weiss' nurse, and she was great, she explained things to me beautifully. So on April 16, my mother's birthday, I had a total proctocolectomy, which means I had my large intestine removed. It took the doctors almost 9 1/2 hours. The doctors formed a j-pouch internally with my small intestine, but that needed to heal so I was left with a temporary ileostomy. An ileostomy is where the small intestine is brought to the surface of the abdoman and an appliance is worn over it to catch the discharge. Everything was going well with my surgery until Monday afternoon when my appliance looked as though it was leaking. When we went to change it, we discovered the appliance hadn't leaked, but was soiled from my incision. When Dr. Weiss came in and looked at the incision, my life was about to change once again. He needed to open up my incision in order to drain the infection. By the time I went home, my incision had started healing and I nicknamed it 'The Ditch.'When measured by the visiting nurses, 'The Ditch' was 10 cm long, 6cm wide, and 6 cm deep. I had two dressing changes each day and little by little my incision healed from the inside out.Unfortunately it became a very large, ugly scar that was often uncomfortable.
A tutor came to my house for 2 hours everyday during the month of May.
I was not suppose to go back to school that year, but I was to the point where I needed to go back to school for emotional reasons. I wanted and needed to be with my friends.This was determined by myself, my parents, and Dr. Rzepski.I told Dr. Weiss that I needed to go back to school and that he needed to make the arrangements. He knew that I meant business so he did everything he could to support me after he determined I was healed enoughto return to school. As a result of everyones efforts, I was back in school on June 4th. In the meantime, my family had received a call from Eva Wickwire who said that Diane Smith would like to see me at the telethon, if we could make it. So, of course we did, and that was the first thing I did to help the hospital. Although I didn't say anything I made an appearance. School ended and summer came, which meant our cruise to Alaska. Everyone at CCMC helped me prepare for the trip with my brand new ostomy. I tried to be a normal kid, but my appliance leaked everyday and my skin was a mess. July came and I went to the UOA Youth Rally in San Jose and learned a way of keeping the adhesive tape off of my skin because in addition to everything else, the ET nurses discovered I am allergic to adhesive tapes. Before I knew it a year had passed since I first walked in the doors of CCMC, and I had already been through so much. September came and I was ready to have my ileostomy pulled through to my rectum so I could pass stool normally again.
The surgery went very well, and I was back at school 2 weeks after the surgery. I was able to play basketball that year, and that was one thing that had kept me going throughout my illness. Everything was going well, until December. On December 23, 1998 I was back in the OR for day surgery and it was determined that I had a rectal stricture which means that the connection between my j-pouch and rectum closed up. They thought that everything would be fine after the day surgery, but that wasn't the case for me. Since December I have had about 48 dilatations in the operating room. Although day surgeries were many,I was very lucky to have such wonderful nurses and thePACU staff taking care of me. I will never forget them. In June I appeared on the telethon but was still not ready to talk about my illness. I managed to go to France with my French class for a week. Traveling was much easier without an ostomiy but there were still challenges with finding bathrooms in time. In July, I attended my second UOA Youth Rally in Boulder, Colorado. I was doing well with the dilatations, but I had to return to CCMC again in August because of the stricture. That's when I met Dr. Craig Bonnani. When he found out that I was a huge Jimmy Buffett fan, he ran back to his office and reappeared wearing his Parrothead operating room cap holding my favorite CD. From that day on, all my anesthesiologists made sure Jimmy Buffett music was playing when I went to sleep in the OR. Just one more unique and fabulous thing that CCMC does for me to make things better !
During my freshmen year of high school, I had two surgeries that left me in the hospital when my doctors tried a new plan to fix the stricture , but they were unsuccessful. However Dr. Weiss was very sucessful with removing 'The Ditch' and reconstructing my incision. It's so beautiful I can now wear a two piece bathing suit. Two weeks after the first surgery I was admitted again because I was so strictured that I was vomitting and became dehydrated. I continued having monthly dilatations in the OR that year and in the summer of 2000, after my freshman year I started weekly dilatations. Dr. Weiss made sure I was able to attend my third Youth Rally in Ohio. I was sent to Mt. Sinai Hospital in New York to receive some advice about my stricture, and it made me cherish everything that CCMC truly is. The atmosphere at Mt. Sinai wasn't anywhere close to that of CCMC's. I was so happy to return to my hospital and my own doctors and nurses.
During my sophomore year of high schooI , I became the drum major for my marching band, and it took so much of my endurance away. All of the anesthesia that I had had in the OR for day surgeries had built up in my system. I was unable to play basketball because I was too weak, but I managed the high school team and earned my varsity letter for manager. I also earned my varsity letter in band and in academics because I had somehow managed to maintain high honors since I had gotten sick. By this point I had had so many dilatations in the Operating Room under anesthesia that it was affecting my stamina and it was becoming dangerous. We needed to come up with a new plan. Dr. Weiss advised me that reconstructive surgery was a very risky option for my stricture because it hadn't been done very often and that it could leave me completely incontinent. My other option was to do home dilatations.
The home dilatations didn't sound very good to me and it was basically the straw that broke the camel's back in my positive thinking. My emotional health went down hill from the moment I had to think about starting the dilatations at home without the comfort of being asleep. With the help and support of Dr. Rzepski, Mary Welker, Dr. Weiss, Bitty, and my family, I was able to agree to the choice that the dilatations would be the best option for me to try . So on February 9, 2001, Mom, Dad, and I did my first home dilatation. We were only suppose to do them for 8 weeks, but when we weaned down to doing the dilatations once a week, I had another stricture and needed to go back into the OR.I was afraid that my biggest fear was coming true. I feared that I would put myself through all these painful dilitations and then have them fail. Mary Welker came and reassured me that it had been a mild stricture and told me that I could get through this. I returned to doing the dilatations nightly and then planned to slowly wean down off of them. Shortly after starting over, I attended the Husky Midnight Marathon on March 9, 2001. I was invited by another CCMC friend, Scott Organek, who works at the foundation.At the midnight marathon I was adopted by, a sorority at UConn called Kappa Alpha Theta. They gave me bags of gifts, and things that interested me including a lot of UConn Women's Basketball memorabilia. The sorority sisters took turns spending time with me all night and made my first Husky Marathon a night to remember. The best part was they were all helping the hospital that saved my life. A memorable part of the night came later when I met six of the lady huskies, including Shea Ralph who had just re-torn her ACL. She came out in the middle of the snow storm because she had heard from Scott how much I wanted to meet her. Scott made this happen and it was one of the best moments in my life. Shea brought along Stacy Hansmeyer, Marci Czel, Tamika Williams, and Asjha Jones to meet me. My dream came true and Mary, Scott, and my family were there to see it. It was just what I needed to boost my spirits up again. A few weeks later, I met with Larry Gold, the president and CEO of CCMC, and shared with him my experience at the Marathon. Larry Gold isn't your typical CEO, he goes around and visits with the kids that are in the hospital or going in for surgery, and he takes the time to listen to them.
I have been doing the home dilatations since February and they seem to be working well. In July I attended my fourth UOA Youth Rally in beautiful San Diego. My junior year started off wonderfully. I made it through band season, but two days after championships I went so far downhill I couldn't help myself back up. I was hospitalized by both Dr. Weiss and my new gastroenterologist Dr. Zeiter. I was hospitalized for a severe flare of pouchitis that was causing a hemmorhage. I made it through my first pic-line during this hospitalization. A pic-line is an IV that goes from your upper arm to your chest. I was always able to talk Dr. Justinich out of getting one, but Dr. Zeiter was no match for my lower lip. It wasn't that bad, but when I was throwing up and there was an accident and the line got ripped out I thought I would have to get another one. Dr. Zeiter informed us that she wanted to try a Remicaid infusion to stop the bleeding. Well remicaid did the trick, by the next day I was doing remarkably well and it was determined that I did not need to get another pic-line. However I would need another infusion. So I had my second infusion, and it worked wonderfully. Dr. Zeiter did a sigmoidoscopy to look at the inside and it was healed. Everything was good until March. I started to feel miserable and my stomach began to hurt and the cramping started. So I had another scope...the number is unbelievably high....and it was decided that I would need another infusion of Remicaid. (This is where we stand today...)
All of these procedures are very painful and emotionally disturbing, but with the support of everyone at CCMC, and at home, I have managed to keep my positive attitude and have continued the dilatations that are the best thing for me. My roller coaster ride to good health is coming to an end thanks to everyone at CCMC.