So I have Crohn’s Disease. I was 15 years old in the hospital wondering what that was and what that meant. Dr. Cartaya explained everything to me, then Dr. Winesett came in and sat on my bed again to explain it to me some more, nurses helped explain…basically I had a lot of learning and absorbing to do over the next few days. Once I kind of understood what was happening, the main focus was to make me feel better. The first change was my diet. I was officially on the NPO diet. What is this diet you ask? Let me explain. No food, no water, no ice chips. It literally means nothing by mouth. It was horrible. It sounds like torture (and it was), but was necessary in order for me to heal. I had to let my bowels rest because every time something would touch the insides of them (even water, I swear) they would become more and more inflamed and reject it causing me to throw it back up. My intestines were honestly destroyed. I threw up all the time and even if I wanted to, I couldn’t eat. My body wouldn’t allow me to. Nothing was passing my stomach. It all came back up. And yes, even ice. So how was I surviving then??? When I first arrived to St. Joseph’s, Dr. Cartaya knew I wasn’t leaving anytime soon, I thought I was, but I was wrong, so he ordered a PICC line for me. What is a PICC line? A PICC is basically a special IV that is inserted into your upper, inner arm and the tubing of the catheter travels up your arm and into your heart to help deliver strong medication easier and faster. It is also able to stay in for months at a time instead of only a few days like an ordinary IV. Standard IVs have to be changed every 2-3 days depending on the medications given. So in order to receive a PICC, you have to be really sick because it is means long term. They won’t give you one if you will only be admitted for a week or two. At St. Joes there is a whole pediatric IV team that specializes in PICCs (not every hospital has that so I was spoiled). Two nurses came in to prep me and insert the IV, but I don’t remember a single thing about what happened that day. You see, when they get ready to start this “procedure” or “insertion,” they give the patient a drug called Versed. Versed is some magical drug because it causes you to feel relaxed, but also have no memory of what happens while on the drug. I swear to you I do not remember a single detail after that was pushed into my system. I could not remember who the IV nurses were the next day, I couldn’t remember having an allergic reaction, and I had no idea how the catheter got inside of my arm. While the nurses prepped my arm with a cleaner, Chlorhexidine, apparently I was complaining of my arm feeling really itchy…yeah, I was itchy because I am allergic to the cleaner and my arm was covered in hives. Don’t remember that! HA! So back to the NPO business. This PICC line helped me eat since I wasn’t allowed to actually eat by mouth. And to be honest, I didn’t want to. I have never been in so much pain in my life. To make sure I was alive I was prescribed a thing called, TPN, or Total Parenteral Nutrition. It was a HUGE bag attached to my IV that had all of the nutrients that I needed in order to stay alive and to try to get me healthy. I have never seen such a large IV bag. I believe I had two of those a day. Or maybe it was just one bag a day that I received every night. I can’t remember 100%. It was a clear, yellow liquid that honestly looked like pee. But, it did the job because I’m still here today to talk about it. People used to ask me if that curved my appetite and made me feel full? NOPE! It did fill my body with nutrients, but it went directly into my venous system not my GI system where the “full” feeling comes from. There was nothing in my stomach or intestines because food was off limits. I was on TPN my entire hospital stay at St. Joes. I was NPO for weeks as well. Yes, weeks. Just take a second to think about this. Honestly, imagine if you weren’t allowed a single ice chip for a month. I doubt you could do it. Well I had to do it with no choice. It was probably the hardest thing I have ever had to do. No hard candy to suck on to help produce saliva, no ice, no water…my mouth was so dry and I was so thirsty. The hunger pains eventually went away from weeks of not eating. How sad is that? So even though the TPN gave me nutrients, I was still continuing to lose weight, lose nutrients, and feel worse. Since I would throw up and have so many bowel movements, I was still losing so much fat and all of the nutrients that were being pumped into me. Due to all of the loss, my hair was falling out. I’m not talking a strand here or there, no, literally clumps of hair were leaving my head. It was terrifying. Hair was all over the floor, all over my bed and pillow, and I was developing a really large part line on my head. In the picture below you can actually see how much hair is missing from the middle. And for those of you who don’t know me, I have an insane amount of hair. It is incredibly thick. Dealing with that was really hard to do. Weight was another huge battle. My techs would have to weigh me multiple times a day, including 2am (Grrr!). So I would hobble (barely) out of bed and step onto the scale. My lowest weight was 76 pounds and I struggled with that weight for a while. Can you imagine seeing a 15 year old freshman, almost sophomore, in high school weighing only 76 pounds!? My 9 year old niece is 65 pounds if that says anything. In order to help with that issue, Dr. Cartaya prescribed me Lipids. Lipids are fat and they are delivered intravenously which means it also goes directly through my PICC line. Another great bonus to having a PICC is that whenever the nurses need to draw blood for the lab, they didn’t have to poke me again to gain access, they could deliver and take blood out of the PICC. It was a beautiful thing because I had A LOT of blood taken. So lipids were supposed to help me gain some weight and let me tell you, even gaining one tenth of a pound was a huge deal! I tried so hard to gain anything. It was just so hard. Every morning at 3am seemed to be my throw up time. It never failed. It was every day, 3am, bucket in hand, and voila, puke. I couldn’t figure out why. I didn’t eat anything. To help with the nausea I was prescribed Zofran. It is a miracle drug. So let’s talk about drugs for a second. Since finally being diagnosed with something, drugs were immediately a priority in order to get me better. With autoimmune diseases there are many drugs as I have explained in my previous blogs. To start off with, doctors begin low. If it doesn’t work they try a stronger drug, then a stronger one and so forth. My case was incredibly complicated. I still had a drain and I still continued to get abscesses throughout my whole stay. That never went away. So how do doctors treat that? Strong antibiotics. I was on a continuous antibiotic drip. Next, pain. My pain was absolutely tremendous. My intestines looked like dog food. They were mutilated and were bleeding and holy cow, they hurt. So I had Morphine. Morphine is very powerful. That’s all I gotta say. Next (again) is Zofran because whenever I had morphine I had to have a Morphine Zofran combo. Morphine always made me nauseous. It never failed. Next are steroids. Dr. Winesett had to start me on steroids right away because of all of the inflammation inside of me. Steroids are horrible. I had IV steroids which are very strong and gave me a moon face and created so much acne. A moon face is the awful round face and sigh…it was just horrible. And you cannot avoid it, that is the worst part. Okay, so pain, nausea, steroids, antibiotics, TPN, lipids…what else? Oh! The actual Crohn’s medicine. Yes, so she started me on something not so super strong. Well, that didn’t work. Next we tried a stronger drug. I remember taking a drug, Pentasa. It was a bright blue capsule that made me poop tiny white beads. That was a weird pill. That didn’t work. Next was something stronger and this went on for weeks until finally I needed the big guns. I tried every single medication there was except for two which were the strongest drugs. Remicade and Humira. Remicade is an IV infusion that takes an hour to receive. It was my last option. So we decided to try it. The tricky part was that if it didn’t work and then later on in life I needed to try it again, I was probably not going to be allowed to. Your body builds up antibodies against it and will attack it next time you try to take it if it is significantly later. It was a risk, but it was my last option before surgery. So we made the decision to start the remicade within the next few days because of how bad I was still declining. Throughout my stay so far I have had a PICC inserted, a drain that has never left my side, many CTs, ultrasounds, blood tests, scopes, and three more surgeries believe it or not. At one point I remember walking into the bathroom and looking into the mirror to find myself green. I was actually green! I have seen it in cartoons when characters feel sick, you know, they turn green. I actually did that! I so wish I had a picture because you probably don’t believe me, but I swear I was literally green skinned. I couldn’t make that up because I never thought it was true. The reason? I was going septic. What is that??? My body was literally shutting down and was full of poison. My organs were starting to not work so well and I was filling up with poison. That is when we all knew how serious my case actually was. I needed another doctor. I needed an infectious disease doctor to come in and look at me. Dr. Bergamo was that doctor. He gave me more antibiotics and took more blood and blah, blah, blah. But seriously, thank goodness for him because who knows what would have happened to me. Honestly. The three other surgeries were all to fix individual abscesses that refused to be treated with antibiotics. It required the doctor to put me under so they could physically empty the abscess then insert another drain so it could continue to empty on its own. Yeah…three more of those! That makes my number of surgeries now five! FIVE within TWO months! Holy cow! As I continued to vomit and poop, there started being blood. Blood was in my stool and it was bad. The whole toilet was blood instead of poop and my nurse was freaking out. I remember telling her that everything was okay, but she wasn’t buying it. She was panicking. That then made my body loose a lot of blood and my hemoglobin dropped significantly which then required me to go through another blood transfusion. I had about 3-4 transfusions total. The hemoglobin by the way is a protein in the red blood cell that carries and transports oxygen throughout your body. Without hemoglobin there would be no oxygen traveling to your organs. At one point along my deoxygenated journey, my hemoglobin was so low that when I was laying down for a CT I physically couldn’t breathe. I actually panicked because I couldn’t inhale while laying on the table. I had to be propped up with a few pillows in order to complete the scan. And then of course as soon as I was wheeled back upstairs blood was immediately ordered so I could be transfused yet again. A normal level for women is between 12 and 16. Mine definitely hit about 6 throughout my stay. Oops. LOL. Probs why I couldn’t breathe! This whole journey was really tough though. Losing that much blood and going septic is really hard on your body to recover from. Not only that, but also recovering from surgeries, trying to gain any weight possible, trying to stop throwing up so I could try to eat again, gaining the strength to lift my body out of bed…it was really tough. When admitted for so long the doctors and nurses make you get out of bed to walk. If you do not walk you have a chance of getting bed sores and blood clots. So I had to walk around the floor without losing breath or collapsing in the hallway. I needed to get my blood circulating. When I was too weak to walk I was forced to wear leg compression socks to help circulate my blood while laying in bed. And I had to wear those more than once. People do not understand what a toll all of this on your body. My insides were so inflamed Dr. Winesett could barely get the scope up into my intestines during the colonoscopy. Your intestines should be a centimeters wide, but when she went to do the scope, mine was so inflamed and red that it was the size of a pin hole. She told us that herself. She needed forceps to be able to open the intestine up enough to get the tiny camera inside. That is awful. When I had my good days and the medicine was able to kick in, I was allowed to try ice. If ice went well, the next was water. The next step you think would be food, but not yet. Before food was even considered I had to go through the liquid stages. First was clear liquid, like gatorade or apple juice or Italian ice. Next was a full liquid. A full liquid would be like a milkshake or applesauce. If I was able to get all of those down without throwing it back up I was able to try food. Real food. I craved pizza in the hospital like nobody’s business. I wanted it so bad. And not any pizza, I wanted the hospital cafeteria pizza. I loved that pizza so much. It was probably the worst choice though because of all the grease. So I started off with a turkey and cheese sandwich with no lettuce or tomato and no mayo. Guess who threw that up?! ME! Now i’m back to full liquids. It was an endless cycle. The fact that I couldn’t keep a plain turkey sandwich down was bad. So I’m sure you guys get the idea. It was seriously horrible. And not only did I throw up, I had the agonizing pain along with the vomit. My intestines felt like they were literally being pulled apart. My stomach had horrible cramps and contractions. I would tense up for a few minutes so bad that it was hard to even breathe, then my stomach would relax for another few minutes until the stiffness and intense pain started again. My whole body was so stiff that my back hurt from my muscles being so tight and my hands hurt from clenching the sheets so hard. I hurt. That went on for weeks. Another thing that went on was swelling. My knees filled up with fluid at one point because I had an abscess pushing on my spinal cord. I couldn’t walk to the bathroom without my mom holding me up to walk. I let all my weight down on her because I couldn’t hold it up myself. I was so weak and so helpless. And let me tell you, your spinal cord is so sensitive. Not being able to get in a comfortable position due to sharp pains running down your whole body is agonizing. That abscess was surgically drained. Fevers were another huge factor. I spiked 103 degree fevers like nobody’s business. I swear I had a fever the whole stay. Not really, but I had them a majority of the time. Those gave me the sweats, the shakes, and the intense hot flashes. I had my room set at 60 degrees or something crazy freezing and I was sweating. All of the nurses had to have jackets on when they entered my room because it was so cold (and i’m not exaggerating that…they really wore jackets). All I know was that I had all the sheets thrown off of me and I was sweating. It was awful. So let me talk about showers. When I was able to take a shower it was more of a chore than anything. Of course it felt amazing to feel and smell clean afterwards, but it was really hard. I never did not have a drain so I had to make sure I was taking care of that properly. In order to take a shower and not mess anything up, I had to make sure both my drain and my PICC did not get wet. For that not to happen, my arm and drain needed to be wrapped up with plastic. My PICC was right above the elbow crease in my right arm, but the plastic covered the crease so I could not bend my arm at all. That meant I only had one arm to use to take my shower. I had to wash my hair with my left arm and my left arm only. I had to squeeze the soap into my hand and wash my hair with that arm and it was nearly impossible. My drain was also not able to get wet so I had to keep that plastic out of the water while also holding my drain because if it fell it was pulling on my wound that it was falling out of. It hurt when it fell that’s all I gotta say. Showers were hard work. It was a love/hate relationship really. But they were a rare occurrence because I was usually too weak for them. In fact, my first shower at St. Joes was given to me by my mother. I couldn’t stand up long enough to actually shower so I had to sit on a plastic chair in the shower naked while my mother washed me. Talk about humiliating. A 15 year old cannot shower by herself. Another humiliating thing that happened were bed pans. Yeah….there were multiple times that I was in too much pain or was too weak or both to where I physically could not leave my bed and needed a bed pan. I couldn’t help it. I didn’t like it either. It was gross. So I did all of this this for weeks. I officially had Crohn’s and I was still learning everything. I was fighting to stay alive. Medications were failing me and I was just declining. I had to withdraw from school in order to avoid failing all of my classes and I had nothing to live for anymore. Depression was there and I felt like death. Was it really worth it anymore? I wasn’t feeling or getting better and I wasn’t gaining weight. It was all going down hill. I was already in the hospital for two whole months. A new doctor had to see me. Maybe he would help me? Dr. Brannon was his name. He was a special doctor because he doesn’t work with people like me. All I wanted was to feel relief. And all I knew was that Crohn’s sucked.
Can you see how large my part was? How pale my face was? How flushed I was? How cold I was under those blankets?
That is all hair loss, blood loss, and fever.
This picture was a struggle. I still remember how hard it was to stand there long enough to get the picture. I didn’t want a picture taken in the first place because all I wanted to do was lay back down and I was so tired and weak.
This picture, although blurry, shows just how many medications I had going at once. I specifically remember taking this picture and wishing I had done it five minutes earlier because this was just after my nurse came and removed a bunch of empty bags. There are a lot on the pole now, but imagine it with more. I was on every drug I swear.
XOXO, Cait ❤