Hello. My name is Bianca, and I am one of many of the teenagers living with Crohn's Disease. I am 17 years old, but I was 16 when I was diagnosed with it. Crohn's Disease is a disease that makes the immune system atttack your intestines, mainly the large intestine. It is possible to get this disease in the small intestine though. If one does get it in the small intestine, it is possible that no symptoms may surface, but in my case, my weight decreased, my cycle stopped, and my breast mass decreased.
I've seen this disease on televison, along with many others, and I remember thinking that I'd never get that because of how active I am, and that I take reasonably good care of myself. Apparently, that wasn't true, and I also found out that a lot of people are afflicted with Crohn's.
Well, to help all of you understand of how I came to know that I had Crohn's, I'm going to tell a somewhat long story.
It was the month of September 2010 when I first began having symptoms of this disease. I began feeling very tired, and I was having pains around my pelvic area, but the pain kept coming and going. Eventually, I stopped eating (or attempted to, although I couldn't because my parents refused to let me starve), and I literally became a lump who didn't want to do anything at all. My parents had trouble getting me out of bed, and my whole mood, attitude, and demeanor had just changed. My parents literally had to feed me because I refused to feed myself. It's like my body was rejecting food completely. I was always upset, or crying, my eyes were kind of giving off that something wasn't right with my body. However, my weight did not begin to fluctuate, and I was still having my menstrual cycle (although it wasn't on time like it should be).
November 2010, my parents took me to the doctor, and my doctor felt around on my stomach and everything like they usually do. They didn't feel anything out of the ordinary, so just to be sure, my doctor scheduled an ultrasound for me. After the ultrasound was over, and I got the results a few days to a week later, the doctor who performed my ultrasound said it might have been an ovarian cyst. Might have been. Also, that there was fluid around my pelvic area that should disappear after a while through regular body functions. After receiving this news, I was still unsure about the results, but it seemed like everything went back to normal after my procedure.
The latter part of January 2011. I began to notice that my cycle was later than it usually should be. I remember telling my mom about it, and she kept telling me to keep an eye on it. The last Sunday in January, my church went to a revival service at one of our fellow churches for support. I was sitting in the audience when all of a sudden, I began to have small throbbing pains near where they first began the last time it happened. My mom kept telling me it was a ghost pain, but I was not convinced. I began to panic, but since I was in church I could do nothing but pray it wasn't anything terrible.
February 2011. This was the month track season started at my school, and this was also the semester I had somewhat difficult classes (the main one being Honors Chemistry. For some reason, it was incredibly difficult for me...especially balancing equations -_-). I was doing fine at track practice, and everything seemed to be going smoothly. Then I went to a sleepover at my friend's house with two of my other best friends. I remember this day vividly because little did I know, that would be the last day I'd have my cycle for six months.
March through June 2011. I did not notice that my weight began to diminish, however, I did notice that everything suddenly became harder for me to pick up or lift. I suddenly could wear my old bras again, and I definitely remembered growing out of them, so that raised a little red flag in my head. Then one day, my mother stopped me as I was walking through my house. She had a worried look on her face. She said to me "Bianca, your clothes are hanging on you." At that point, her statement further convinced me that something was wrong, even though she said that it was all in my head. However, I still continued on with school, outdoor track, and my other extracurriculars, not knowing that I was real sick. I finished with all A's, despite all my body was going through. Although, after my sophomore year of high school was over, it just felt like that last semester sucked the life out of me.
Then my family went to the beach in June. Those trips are fun as always, especially since my brother, his wife, and my niece were able to come with us again. For some reason though, I felt like I didn't want to do any of the things I usually do when I'm at the beach with my family. My parents were getting extremely mad at me because they felt like I was just being a lazy bum, sitting around at watching everyone move stuff. They constantly yelled at me, and I kept yelling back, "I can't help it! I just can't do it! Leave me alone!" Of course I got in trouble for yelling back, but I was telling the truth. They constantly got mad at me while we were at the beach because I was wasting money on food that I thought I could eat. Here's the thing though. I thought it would be smart not to order anything since I knew I probably wasn't going to be able to finish it. When I didn't order anything, they got mad at me saying you need to eat and all that. When I did order something because they told me I had to, I couldn't finish it, so they yelled at me for that. It seemed like I couldn't win. My family just thought I was being an a** for no reason, just to get on their nerves. I wasn't though. How I was acting was not in my nature, and I knew something was causing me to act that way, stubborn and what not, but I just didn't know what it was.
After we got back from the beach, I began my summer internship again at Coca-Cola Bottling Co. Consolidated in Charlotte. Everything seemed to be going fine for the first week and a half, and then here comes the second week there. The week before, my colleague Brandon and I, went around on foot manually installing antivirus software on all the occupied desktops and laptops at Coke. I remember being so tired after that week, and it seemed like everything began to go downhill after that. I kept going to work like normal, but when I got there, I couldn't walk and stand up straight, and I remained stationery at my desk for the whole day. I even ended up falling asleep, even though I knew I wasn't supposed to, but I just couldn't fight it any longer. Then one day, my brother dropped me off, even though I felt terrible. My stomach (it wasn't really my stomach, but you know how people always generalize a pain in their torso as being a stomach ache sometimes) was just a hot mess, just to say how in pain I was because I can't think of any other way to describe it. I remember getting into the elevator, going to my floor where my temporary desk was, and going straight to sleep (attempting to at least). The pain in my torso seemed to escalate, and I had to call my brother to come get me within the hour that he dropped me off.
Referred to a gastroenterologist. Soon as I got home that day, I went to my pediatrician (yes I still go to a pediatrician because you are allowed to until you are 19 I think... -_-), and she referred me to the pediatric unit at my local hospital. This was the first time I dealt with a gastroenterologist. To be honest, I was scared because, if I got referred there, then something was definitely not right. Once there, I met Dr. Sandberg (who I still follow up with to this day) who described to me what I might have going on within my body. He felt on my stomach, and felt a squishy mass near where my ovaries and small intestines were. A huge red flag went up in my head then. When he told me I might have Crohn's my anxiety increased ten fold. I started imagining all sorts of things. However to calm my nerves, Dr.Sandberg presented a list of steps that I would take to see if I had Crohn's for sure. The steps were as follows: 1. Get another ultrasound, and get a colonoscopy/endoscopy, 2. If something was wrong, begin a steroid, 3. If the steroid failed to show any effects begin 6-MP (Mercaptopurine), 4. If the 6-MP fails, begin Remicaid, 5. If Remicade fails, 6. Go straight to surgery. At that point, my anxiety peaked again, and I began to hyperventilate, and pray like a mad person. Like before, Dr.Sandberg calmed me and said that there is a possibility that my case is not as severe as other teenagers he's dealt with before. In fact, he said that a girl about my age began the second step with the steroid and that all her problems went away. That made me a little less panicky, but I still wasn't convinced otherwise.
Beginning the steps to defeat Crohn's. I got another ultrasound as I was told to do. Remember that "ovarian cyst" I mentioned earlier? Well it was still there. Except, it was a little bigger, and that was the squishy mass that Dr.Sandberg was talking about. That was also what the doctor who did my ultrasound the first time said that there was fluid in my pelvic area. All of that was still there. When my dad found this out he got a little ticked off that my pediatrician who felt on my stomach when all of this began did not feel the squishy mass in my torso. To be honest, I was mad too, but there was nothing I could do about it. After that, I got my colonoscopy/endoscopy (this all happened between July and August), and I saw the insides of my small intestine, stomach, large intestine, and colon. My stomach was fine, my colon was fine, and my large intestine was fine. Everything went fine except for the fact that the surgeons who performed my procedure couldn't get through my ileum, and my cecum (think of that as the stomach of the small intestine and the colon. Those two parts connect the small intestine and the colon together). Also, in the pictures from my procedure, my appendix was a little inflamed (my pediatrician thought I might've had appendicitis but, thank God I didn't). Well, after I saw the results, Dr.Sandberg interpreted them a little more, and came to the conclusion that the steroid I was taking had no effect. I know what you're thinking at this point. I have to move on to step three. That's where you're wrong. See, since I'm such an overachiever, I went ahead and skipped right to step six. That's right. I had to have surgery. That was the news I dreaded the most. However, it became a reality, and if I didn't go through with it, I would be worse off than I am right now. By this time, my weight had diminished down to 92 lbs. I was literally a walking stick. I looked so sick, and it was taking a toll on my whole family. They hated to hear how sick I was, and I kept apologizing and told them not to worry because I knew God had everything under control. There were nights before I had surgery that all I could do was cry. One night in particular, I was in so much pain, screaming so that I ended up crying myself to sleep. Even so, how many of you reading this know that God works in mysterious ways?
On to Surgery. Once my church family heard that I had to have surgery, and my family all across the United States heard too, people just began praying for me everyday and every minute. Listen, prayer will change things, and in my case it definitely did. I was scheduled for surgery on August 4th, 2011...
TO BE CONTINUED.
Continuation: When I received this news, which was the latter part of July, my mind couldn't wrap around the idea of myself having surgery. It was completely imperceptible. I still went through with it, because I had to. My life was at risk. That was still imperceptible as I was typing this story up. Aside from that, my surgery day seemed to creep closer and closer everyday I anticipated it. I think that was my biggest mistake, anticipating it.
The Day of Surgery. The day had finally arrived. I went into Pre-Op at Carolinas Medical Center Northeast, at 6:30 a.m. The nurse, which I was surprised to see that I knew, got me ready and checked my vitals and everything else. It was a comforting element to know that someone I knew was there with me, along with my parents. While I was waiting there, amongst many other patients who were waiting to have surgery, many thoughts began rushing to my head. What if I don't make it through? What if something goes wrong and I have to have some kind of "bag" attached to me for a long period of time? What if I'm not able to do all of the things I used to enjoy doing? All of those "what ifs" came back to back, rushing into my head, filling it with terrible thoughts. Then, several people from my church showed up to pray for me. I seemed to relax a little bit after that, but I was still unsettled. I think I was in Pre-Op for about an hour to an hour and thirty minutes. Then the nurse I mentioned earlier came in to "take my mind off things". She brought me a pad and a pen and asked me to draw something because my mother had told her I was in Visual Arts courses at my high school. Pretty soon all my focus was on my drawing (which by the way I didn't get to finish ha ha). Then a little while after that, everything seemed to move quick, and before I knew it they were putting an I.V. in (I hated that part), and they were putting some "happy juice" in my I.V. to make me calm down. Now, the best thing about this whole surgery process was that I had two of the most wonderful pediatric surgeons anyone could possibly have. Their names were Dr. Pillai, and Dr. Hoover (these men actually cared for their patients. They connected with them on a personal level, making sure everything was fine, and they also made sure to explain everything that they would perform on their patients before the actual operation). After I had my "happy juice" injected into me, Dr. Pillai came to see me, to reassure any bad feelings I was having and to make them go away. To be honest, that "happy juice" seemed to be wearing off because I started thinking bad thoughts again. Apparently it wasn't though, I was just imagining things like I always do.
Ten minutes after Dr. Pillai left, I don't remember much after that actually. The last thing I remembered was them telling me, within ten seconds of the anesthesia entering your system, you'll be knocked out. They were right, because the next thing I remembered was waking up in Recovery II.
From Recovery to Admittance for almost a Week. As I just finished saying, the last thing I remembered was waking up in recovery. I struggled to force my eyes open, just to see where I was. That was very hard, considering that I was still on a heavy dose of anesthesia. The next thing I remember saying was, "I want my Nana and Mommy"(yes, I was 16, and still saying mommy. There is nothing wrong with that), and once they appeared, my mother said I immediately said "Praise God." I didn't remember saying that, but my mom was so grateful that I did say that. It truly was by the grace of God that I made it through that major surgery. My parents and grandmother weren't supposed to be back there in recovery, but apparently I was making such a fuss about it, that they let them come back there. I don't remember any of that ha ha.
Now, the recovery room was pretty dark, I guess it was so the people waking up from anesthesia wouldn't hurt their eyes. After I had woken up, I remember looking to my left and seeing a nurse unhooking things from me (I don't know what they were...I don't want to know...), and I saw the nurse that was with me before I went into surgery, and another familiar face too. That greatly comforted me, seeing those people and my relatives with me right after surgery. However, still heavy on anesthesia, I kind of remember being rolled out on the hospital bed onto the Jeff Gordon's Children's Hospital floor. They rolled me over some bumps, and I was thinking to myself, why does this hurt so much? Yeah, well obviously I had just gotten out of surgery, but I was oblivious. I dozed off after that, and I remember waking up to them literally yanking me by way of sheets onto the hospital bed in the room I was staying in. The nurses said something about, "Sweetie, this might hurt a little bit," and by that time, in my head, I was going, "Huh?", then next thing I knew I was onto the bed, whimpering in pain. It didn't hurt all that bad because of the anesthesia. After that, I slept into the day.
Day One of Admittance. I woke up, and I tried to sniff. When I realized I couldn't, I reached up to my nose, and to my surprise, there was a tube going into my nose. Next thing I realized that my throat was extremely sore. Then I began to freak out a little bit. They had put a tube, known as a NG tube through my nose, down my throat, down my esophagus, and into my stomach. The purpose of this tube was to prevent anything in my stomach, mainly stomach acid, from traveling through my intestines because I had just had surgery on that part. I immediately wanted that thing out of my nose, but I unfortunately couldn't. I was also very stationery, still on anesthesia, and laying flat on my back in the hospital bed. I still didn't feel any pain, which was a good thing. A lot of people came to visit me that first day after surgery. I was so out of it that my mom said I kept telling everyone who came to see me that I loved them. I don't remember any of it really. After those people left, I fell asleep again, and that was all I remembered for that day.
Day Two of Admittance. Day two, was quite interesting. I woke up and tried to move. By then, the anesthesia was beginning to wear off. Talking about a lot of pain? That was a new level of pain I had never experienced. I stopped moving, and I just accepted the fact that I couldn't move. What people don't realize is that, no one really knows how much they use their core to do every day simple movements, such as walking, until they can't use it anymore. I couldn't even cough without it hurting. Not to mention the scar tissue pain. That was unbearable. Well, on this day, I got some more visitors, including two of my best friends, Trudy and Narvie. They stayed with me for a bit, but then they had to leave to go somewhere. That's all I really remember in terms of people visiting me that day. Also, I had taken an attraction to watching Food Network every single minute I was there in the hospital. I was so hungry, and my mom wanted to know why I was torturing myself ha ha. I didn't think I was, I saw it as a recon opportunity to scope out what I was going to eat after I left the hospital.
Anyways, the whole time I was there, my brother Trey, and my parents stayed with me. My closest brother and I in age, we argue a lot, as do many other siblings close in age. However, I love my brother and when he realized I was sick, he turned into a totally different person. I really appreciated that he stayed with me as much as he could while I was in the hospital. In fact, one day, when I felt like I could walk, or in my case, make it, to the teen room on the floor I was on, he hooked up the Wii that was in there and we played Mario Kart. Of course, Trey beat me, although he knew I would murder him if I were able to properly use my arms. What people don't realize, it was a hassle for me to even lift my arms up without somehow using my core. Plus I had that NG tube still in my nose, and my goodness, I wanted that thing out!
Haha, after I played with my brother, he helped me walk back to my room and helped me get into my bed. I just have to say, that was pretty difficult too, trying to get in and out of that bed with no body strength whatsoever...
Day Three of Admittance. By this time, my anesthesia had worn completely off, and I was feeling a little bit more pain everytime I attempted to move in my bed. My parents kept complaining to me that the bed kept them up all night because a hospital bed moves everytime the person in it moves, to accomodate them. Unfortunately, the noise of the bed adjusting was loud, thus keeping my parents up. Also, my IV kept going off everytime I moved my arm, which, it was in a bad place on my arm anyways. Aside from that, on day three I was feeling better, and little bit more coherent. I started realizing who my different caregivers were because they switched around obviously because of their shifts. However, my favorite nurse's name was Emily. She was so cool, and I still miss her. There was another nurse that I liked, she kept helping me with my NG tube and she's the one who removed it when it was time for it to come out (I LOVED HER FOR THAT). Also the lady that came in and delivered my parents their free breakfast, she was cool as well. Anyways, several more of my friends and church family came to see me that day. Haha, Erin, one of my bestfriends came to see me three times I think while I was in the hospital, which was really cool. Although when she came, I wanted to laugh so hard because we had begun talking about how people act in church haha we were rolling, but I couldn't laugh the way I wanted to which was terrible. Also, Katelyn, another one of my best friends came to visit me, and she stayed a long time. She stayed and was there when my sister and my niece Payton came to visit as well. It was fun having them all there, it made me happy. Oh, and I can't forget the Goodwins. Aesha, another one of my best friends came to see me with her family, and she was quiet the whole time. I could tell she didn't like seeing me in a hospital bed with a tube coming out of my nose, hooked up to an IV. Hey, I was all fun and smiles though haha. Oh yeah, last but not least, one of my favorite cousins/best friend, Isaiah, came and visited me too. He stayed a long time as well, and we watched The Emperor's New Groove. Then Isaiah kidnapped my iPod, which I still dont' understand why, but it's ok haha.
Day three was pretty eventful for me, and I enjoyed it a lot.
Day Four of Admittance. I think day four was on a Sunday because several minsters from my church came and gave my parents communion. Yes, I do believe it was on a Sunday because Erin came to visit me again after church with her brother and sister haha. Anyways, Sunday was quiet other than some of my visitors, oh and I think this was the day I got my NG tube removed. Yes, I had made so much improvement with walking, and I was standing up straight, that my NG tube was taken off suction, and put on gravity (that means that a machine wasn't sucking stomach acid out of my stomach anymore). Also I was only going to the bathroom to urinate, but I think this was the first day I began to do "number two" again (haha I apologize, but my nurses desperately wanted me to do that. That meant that my digestive system was working properly again because that anesthesia shut it down. Haha my nurses kept saying, "Yay! We love the poop!"). Haha aside from that important milestone, I was informed that I could begin eating normal food the next day. That day, I was allowed to eat vegetable broth, cherry jell-o, and ginger ale, in case I began to get sick from the food, which praise the Lord, I didn't get sick. I also decided that day I would rematch Trey in Mario Kart, of which I brutally murdered him in three times back to back haha. By day four, I was walking fast, and I was feeling amazing.
Day Five of Admittance. Everything was going great by day five! I was allowed to eat real food, and I got to eat spaghetti, macaroni and cheese, more cherry jell-o, some crackers, and some more ginger ale. Food never tasted so good to me. By this time, my NG tube was out and I was able to sleep easier, my throat wasn't hurting, it was just great. I could walk like a pro again, although I was unfortunately unable to cough or laugh like I wanted to. Also on day five, Deacon Rose, my deacon from my church dropped off a care package for me. Deacon Rose is so cool and I love him a lot (and his wife too). Aside from that, in that care package was two half gallons of sweet tea, a half gallon of fruit punch, a pig pickin' cake, fried chicken, roast beef and rice pilaf, green beans, macaroni and cheese, oh my goodness, it was amazing. It smelt so good too. Unfortunately I couldn't eat all of it.
Day five was a slow day. I was actually ready to go home by this time, but it was ok. I enjoyed the bed, and food, and television, and my awesome nurses.
Day Six of Admittance. One thing I almost forgot to mention was that I had a pump goin in through my belly button. This pump was called an On-Cu pump, and it numbed the area where my incision was so that it didn't hurt as much. That wasn't a hastle because it was small, and it got smaller as the medicine was released into where it was inserted in my belly area. Haha I also forgot to mention that I had a "house arrest" bracelet on my right wrist. It wasn't really house arrest, it was just so that the nurses could keep track of me and so they could make sure I wouldn't try to make a break for it. Man, by day six, I was ready to eat a waffle from Waffle House, or IHOP or something. I was desperately longing for waffles for some strange reason. However, it was the last night I was staying in the hospital, and it was great news that I heard I would get to go to my house the next day. First thing I said I was going to do was eat, and eat, and eat. Day six, my mom and I watched our show Ghost Whisperer, and really didn't do much of anything else. My father had to go get some of his things for work because he works at home. Day six was also slow as well.
Day Seven, the day I got to go home! I was so excited to go home. I hadn't been outside in a week. I was totally oblivious to everything that was going on outside the hospital walls. Apparently, it had rained heavily, and stormed while I was admitted, but I heard nothing at all. Anyways, my nurse that took my NG tube out also took out my IV, which I was excited to get rid of too, even though it was helping to keep me alive haha...Also, I got my house arrest bracelet taken off, and once more I was a free girl, sort of. I couldn't leave the hospital until my surgeons came to see me again and to see how I was doing. Once again, they were the best surgeons any child could ever have. They took such good care of me. After Dr. Hoover came to see me (Dr. Pillai couldn't come because his wife had recently had a beautiful baby girl, but he did come see me the day after I had surgery), my parents packed everything up, one of my nurses went to get a wheelchair, and I was wheeled outside. Man, was it hot out there! I had been cooped up in air conditioning for the past week, and I had forgotten that it was still summer haha!
I was kind of sad to be leaving the hospital, because of my awesome nurses and people I met. However, I was glad to be going to my house too. I missed it a lot. Once I got home, my mom got me situated on the living room couch, and I ate, and went to sleep. My brother played Star Wars on the Wii of which I watched him do for two days straight...He had to keep an eye on me though, so I didn't blame him, and it was fun anyways. We kept making fun of the people that he sliced up with the light saber hahaha.
Other than that, everything seemed to fall into place, and my health just got better everyday.
Well, that was my long story. The whole adventure, that changed my life. I will never be able to forget this, as it is evident with how well I explained what I went through.
Remember how I mentioned at the beginning that my weight had decreased to 92 lbs? Well, by the grace of God, I am proud to say that I have gained a reasonable amount of weight and now I weigh 137 lbs! I am running track and I am having no problems at all! I think I mentioned that I have asthma as well. Since I was little, everytime I went to the doctor, my oxygen level was never 100%, but since I had surgery, it has been 100%, also giving praise to God for that. Also, I had never had a real birthday cake since I can remember, and for the first time this year for my 17th birthday, I had a real cake, with egg in it and everything! I have to say, I am extremely thankful and grateful. God knew what He was doing with me, and I am glad that I trust Him, and love Him. Without Him, I don't know how I could have survived this whole complicated moment of my life.
I am just amazed at the progress I have made. Since everything happened so fast, with me having to have surgery, I hadn't really had time to think about what all happened to me within those 7 months. Typing my story up has helped a tremendous deal, and I'm glad that I am able to share it with anyone who wants to read it.
Last but not least, I recently had a check up colonoscopy (sometime in February 2012) to see if I had any ulcers in my intestines from the medicine I am taking, called 6-MP that prevents my Crohn's from coming back. Thanking God again, Dr. Sandberg came back with a report saying that my "insides were pretty and perfect."
I am truly thankful for everything that has happened to me. It has shaped me, and still continues to shape me into a phenomenal young lady.