School:

When I was in eighth grade I did something called home-instruction. That is where instead of me going to school I have teachers come to my house and teach me. Well this is what  I am doing it again. So far I have been out for three months, and boy has it been stressful. I left school because I was missing a ton of school because mornings have been hard which has caused me to miss a ton of school work. So, it was decided that I take some time to make it all up. Well its been stressful. Now that I am almost caught up I will be able to go back soon. The set date is February 3rd and I am so excited! Being home all day can get really boring and I miss all of my friends. I have a meeting this Tuesday about going back to school. When I get back I will be going back partial day. I am very excited to see my friends and to get back in a classroom. These three months have been crazy and just lonely and I am ready! I have a meeting tomorrow with the guidance department and some of my teachers to figure out a schedule and to answer some questions so, it will be easier for me to get back. I have two weeks left and I have been counting down the days! Hopefully my meeting will make my transition back less stressful and I can definitely assure you that my next few post will be about meetings and getting back to school! Thanks you all again for your support! Have a wonderful week!

Decisions Decisions:

Well 2014 is going to be starting off with making yet another decision. I am so not excited about this, and as I explained in my last post just down below, decisions want to make me crawl back into my hole. I always get overwhelmed by making these decisions. The tears start to come, I get stressed and upset and I usually just break down. At my last doctors visit, my doctor told me that I still gained another 4 pounds and growing taller. I thought well that's good right!? Well she said that it's okay but, she still might be worried I have inflammation in my lower intestines. Which to sum it up means no good. So, she said I would go into the hospital and instead of getting yet another endoscopy, I would swallow a tiny pill with a camera on it, and wear a box around my side. As the pill goes through it take hundreds of pictures. I find that fascinating yet still pretty gross. Either way I am still very happy that it will save me from not eating for a whole 24 hours and going under anesthesia. So that's step number one. Step number two is changing my treatments around, and this is where I start to breakdown. I was given a choice. Choice number one: I get to keep continuing Enteral therapy but, up the amount of intake. I was told that for 2 weeks out of an 8 week time period I could only do formula. That means not being able to eat anything for those two weeks and only drinking clear liquids again. Choice number two: Go back on medications. I have three different choices of medication that she gave me. One of them is through injection and an IV and the other two are pills. Now I know what your thinking, continue the Enteral therapy because you already know it works. Well after writing a Pro and Con list i'm not so sure. I remember when I first started with the enteral therapy I got really sick because it was just strictly liquids. I'm afraid that at the beginning of every 2 weeks I have to go through I will get sick like that. Also having to deal with it in school. It was hard enough in middle school but high school! I would really rather not. Also it really is just a pain. With medication you go into the the hospital and sit for two hours with a needle every two weeks, to fours weeks, to eight weeks, or just take a pill and be done! I wouldn't have to worry about not eating or the stress of walking around high school with that backpack and my pump running during the whole day. But with medication there are also the harmful side effects which I hate. So, I am absolutely stuck on what to do, hopefully we will set up another doctors appointment to discuss all of this craziness. I hate feeling lost and stressed and hopefully after this decision is made maybe some weight will be lifted off my shoulders.

Hard.

Looking at old pictures is hard. Seeing how thin I was and how sick I was. It's hard seeing yourself like that. Having a tube in your nose for seven months with the stares you get that make you so frickin insecure its crazy. The I wish thoughts that flooded my mind when I was in public. The word I can describe this whole experience is hard. When I would cry with my mom and she would tell me that things would get better. But, sometimes it seemed things were never going to get better. The stares, the side whispers, the questions, and the looks that you knew exactly what they were thinking when you saw their faces: Freak. It broke me. I was in a hole and the more I tried to climb out the more I was getting buried deeper. All of this has made me who I am today. The harsh looks and comments broke me but when I put the pieces together again I was stronger then ever. The looks the meant nothing anymore as long as I held my head high. I soon got better after 40 pounds now and still going strong. But when I have to make another decision it feels like i'm back in that hole. Sometimes I want to stay there and ignore the rest of the world and my responsibilities but that cant happen. As a 15 year old girl I never imagined having to worry about this stuff, about medications or treatments. I just want to be that 15 year old girl who can worry about school and work and friends and the latest gossip. These things are silly but when you have bigger things to worry about you wish you didn't have to. But, going through this whole experience has made me stronger. It's made me who I am today. Even though I wish I didn't have this sickness or disease, I realized that wishing wasn't going to get me anywhere. You just have to stand up be strong and climb your way out of that hole. I just wanted to take a second to thank everyone who has helped me climb out of the hole that I was getting buried in. It really means a lot. So thank you for giving me the courage and support to keep my head held high and the strength to keep going.

My Speech:

Since many of you guys weren't at the fashion show I thought that I should post my speech from the 2013 fashion show beauty galla. So here it is guys my life journey in one speech. I hope you enjoy, and want to thank everyone who has supported me all the way, so thank you <3

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!

Fashion Show Time 2013!

Hey guys I know I haven't updated you in a while and that seems to always be what’s happening but, keeping up with school work hasn't been entirely easy. Anyways today is Thursday and it's bring your child to work, so I have been able to take some time to write a couple of posts. Yesterday I went to a store called Boubou's in the Willow-Brook Mall. It's a really cute dress shop and I went to go try on some dresses for this year’s fashion show!! Also I haven't gotten the chance to tell you that this year I am being honored and I am writing a speech and everything! I found this really cute short dress and can't wait to wear it on Monday. The fitting went well and afterwards I met up with my grandparents and we had dinner at the Cheese Cake Factory. Tonight I am going to buy some shoes and I will definitely post up pictures from the show right after! I can't wait I am so excited but also nervous at the same time because I have to give a speech in front of everyone. But, I am a pretty good speaker in public so I am not too worried haha. Not to brag well I will keep you posted thanks for your patience and sorry again for not updating anything in a while.

Finally I Broke 100lb!!

Well as you probably just read from the title I BROKE 100 POUNDS!!! Haha, finally after a year I have been able to gain a little more than 35 pounds now. I am currently at 102lbs and I have gotten a lot taller. Thank god I hate being short! Anyways things have been going well, I haven't been going to the bathroom as much and I am gaining weight and growing. High school has been difficult but, I am able to keep up at a steady pace and I do my best to get all my makeup work handed in. I still get sick in the mornings every once and awhile but, it’s been a lot better. Although I haven't been hooking up as much as I should everything is still going okay. I don't hook up during school anymore, I made that decision towards the beginning of the year because it was becoming too much of a hassle and it was a little embarrassing. I just want to be a regular teenage girl and not have to worry about my pump or the problems it may have. I want to worry about school work and being a teenage girl haha.

Stress

            Stress! What do you think about when you hear that word? You might look it up in the dictionary, but in my words the meaning of "stress" may be different. When I think about the word "stress" I think of things like being overwhelmed, overloaded with work, tiredness and even anger. See though let me ask you this, what is your definition of perfect? No human being is perfect in my mind. See we are just average human beings, and human beings are not perfect nor should they be. I am, for one thing, definitely not perfect and I don't expect to be. You must understand that when a human is in the state of stress, perfection does not come to mind, but anger does. When I get stressed I get angry and emotional, and I am pretty sure that I'm not the only one. When someone is in a state of anger, nothing good will come out of that.
              When I miss school because of being sick, I miss work and fall behind. See when you're in high school and you miss just one day, the makeup work never seems to stop. To tell you the truth, I  haven't been able to say that I've not had any makeup work since the beginning of the school year. Instead of me taking a deep breath and relaxing, I get overwhelmed by all of the work I have to do. Then I get emotional and break down. Stress is certainly not good for your health. It makes your blood pressure rise and it effects you physically and emotionally.You are hurting yourself when you just stress yourself out. I for one would know that better than most, after two years of having this disease. When you have Crohn's though, stress is much worse. With Crohn's, people have these things called flare-ups. In my case, it's where my intestines become irritated and it makes me very weak. It not only effects my stomach, but it also causes my joints to hurt and I get easily fatigued. Stress can easily cause someone with this disease to flare up very quickly.
                This has been happening a lot. The more work I missed, the more stressed I got which then made me sick and caused me to me miss more work. Just think about it as a triangle that just keeps going and going and going. But, I couldn't do it anymore! I had to break this continuous cycle somehow and it had to start soon. So, I got organized, and I took that deep breathe and worked as hard as I could without overwhelming myself. I took breaks and did everything in my power to not get stressed. Humans are imperfect as I said. I don't know about you, but after a long day of school all I want to do when I come home is relax and sleep. But, if I sleep I don't get my work done and then the stress starts again and that triangle soon gets put back into my life. See we are humans, and we don't want to work at home after a long day, but it's called life. With life comes responsibilities and we must know that as much as we don't want to work, we have to. When you break that triangle of stress you feel free. All i'm saying is break it and you will find that life will be much less stressful.