Hello, my name is Sophia DeSenzo and I was diagnosed with Crohn's disease in March of 2011 at the age of 12. For those of you who aren't familiar with the disease, Crohn's is an auto-immune disease that affects all of the organs of your digestive system. It can cause stomach pain, fatigue, nausea and joint pain. It also causes you to spend lots of time in the bathroom.
As far back as I can remember, I've always had problems with my stomach. However, every time I went to the pediatrician, the symptoms never stayed around long enough for anyone to correctly diagnose my condition. I heard things like, “It’s food allergies” or “she just has a nervous stomach”. It was even suggested that I get counseling to help me handle stress better. Still, no one was able to tell me what was wrong, and still the pain in my stomach came and went.
As I started 7th grade, I noticed that my belly pain and visits to the bathroom had become more frequent and I began to lose weight. As we approached the winter break of 2010, the weight loss had become very noticeable. Frustrated and with no answers, my mom asked the school nurse to compare my weight at the beginning of the school year in October to what it was in January. We were all shocked to discover that I had lost 6 pounds. Now 6 pounds may not seem like much, but to a teenage girl who was already underweight, it was a lot. When we added that to the belly pain, constant trips to the bathroom and the fatigue, we KNEW there was a serious problem.
We set out to find a doctor who specialized in Pediatric Gastro-enterology. After many recommendations and a lot of research, we were very fortunate to find Dr. Leiby and the great people at Goryeb Children’s Hospital in Morristown. After I explained what I had been feeling to Dr. Leiby she felt strongly that we were dealing with either Crohn’s Disease or Colitis, but she wanted to run some tests to be sure. I gave blood samples, stool samples and was scheduled for a colonoscopy and an endoscopy to see if any parts of my G.I. Tract was affected by this disease.
As I was sitting in the hospital bed waiting to go in for my procedure, I was nervous. I had never been put under anesthesia and I was anxious to find out what I had. After all, I didn't even know what Crohns was and how serious it could be.. When of the results were back, it was clear to Dr. Leiby that we were dealing with what SHE called a mild to moderate case of Crohn’s disease. As my parents and I discussed Crohn’s with Dr. Leiby, we were quickly overwhelmed with information: all of the parts of the body that are affected, treatment options and what happens when a person is experiencing a flare-up.
It was during this time that we were introduced to CCFA, the Crohn’s and Colitis Foundation of America. Dr. Leiby knew that we would go home and research Crohn’s on the Internet. She told us to be careful because we would find a lot of misinformation on the web but she did recommend one site that was very reliable, contained accurate information and would help to answer our questions. That website was ccfa.org. The site is filled with so much information on Crohn's and Colitis. CCFA has been a valuable resource to my family and to me. Not only were we able to find answers too many of our questions, but I was able to make connections with other young girls who were experiencing many of the same things that I was at that time.
Once the initial shock of the diagnosis had settled in, we needed to start some kind of treatment.. Over the next 8 months we tried a series of medications in an attempt get the disease under control. I started out taking Pentasa and shortly after that added Enticort. During the times I experienced flare-ups, Prednisone was also added to help with the inflammation. At one point I was taking as many as 10 pills a day, not including Tylenol which I would take during the times I had really bad pain in my joints. On Mothers Day of 2011, I ended up back in the hospital with severe stomach pain. We realized at that point that my Crohn’s was more serious than originally diagnosed and a stronger medication was needed. To control the inflammation, I was put back on a higher dosage of Prednisone for the summer and then had to wean off of it before I could start the new and stronger medication called 6MP.
I was getting more and more frustrated as nothing seemed to be working. My stomach still hurt, my joints were killing me, I was constantly going to the bathroom and at this point I weighed less than 65 pounds. As a result of the joint pain and fatigue, I was finding it increasingly difficult to do the things that I loved to do like gymnastics, basketball and softball. To make matters worse, I was told that I had to be on the new medication for 8 weeks before we would know if it would even worked.
By November of 2011 my disease had really progressed, even after 8 weeks of new meds. At that point, my doctor gave me an ultimatum...There were only two treatment choices left: yet another even stronger medicine called Remicade, which is given in the hospital through an IV or a treatment called Enteral Nutrition Therapy. Enteral therapy is when you get an ng tube put it your nose that goes into your stomach and you get fed nothing but formula for the next couple of months. You can’t eat anything during that time, giving your intestines a break - and time to heal.
Not knowing anything about either option, my parents went back to the CCFA website to do more research. Not only were we able to find many answers to our questions, I even connected with a girl named Isabel. She was 15 at the time and she had been going through the same thing I was. I had gotten a chance to email her and then we set up a Skype date. Talking to her had made my decision a lot easier. So, after talking to Isabel and all the research we did, I decided to go with the enteral therapy.
The first night with the ng tube was New Year’s Eve. I got really sick and wanted to rip it out and be done with it. I was ready to quit but with my moms support and help she got me through the first night. It was hard and I kept gagging. When it was time to take my nighttime pilIs, I put the first one in my mouth and almost choked because It was so big and I wasn’t used to having a tube down my throat. It was also tough not being able to eat my favorite foods.
Anyway, after a few weeks I had gotten used to it and I even started a blog. I called it, sophs journey with crohns just to give support and advice to other people who might be going through the same thing. While all of this was going on, I was absent from school for the first couple of weeks, Then I got something set up called home instruction. Its where all of my teachers came to my house and taught me at home.. It was like that for a little over 3 months and when I finally went back to school half day, I got so much support and love.
I had the tube in my nose for about 4 months and it was working great I was gaining weight and was getting taller. Everything was working out great. I had even reintroduced food back into my body and although it was a little rough at first, it went well. I just had to watch what I ate still. So, I was back in school, eating and gaining weight. I was doing great! A couple of months had passed and I had now had the ng tube in for 7 months total and it was time for the next step. The next step involved getting surgery and a g tube put in my stomach. I had made the decision that THAT’S what we were going to do and set up a surgery date.
Last July, I had the first part of my surgery and the experience was horrible. It was probably the worst day of my life because I had never had anything like that done before. I was sore for a couple weeks but the pain had soon passed and I was back on my feet. I had no longer had the tube in my nose, it was now in my stomach. It was going well and now it was time for high school. I had had a few problems with the tube in the beginning of the year so, I stopped hooking up during the day and I had no more problems. After three months, it was time for the second procedure - to get rid of the tube and to put in a button. The button looks like the valve on a beach-ball which is much easier to hide under clothes. ---So, I went in for the second part of the procedure and thank goodness, it all went well.
Since then I have been doing great. I have been gaining weight and I have been growing taller. From the day of diagnosis, I have gained 35 pounds and I have gown about 5 inches. This whole experience has made me a stronger individual and helped me grow as a person too. I have learned so much and would like to thank the following people: I want to thank my parents for being with me the whole way, to CCFA for being such a great help and resource, My doctor, Dr. Alicia Leiby and her staff. Monique, for being there for me when I needed her. Most of all I would like to thank Lina and salon Amichi for setting up tonight’s event and for everyone here tonight who donated money to help find a cure. I hope you all enjoy the remainder of your evening and thank you again for coming!
