Daily Life

Patiently (Impatiently) Waiting

It has been a while, friends! Let me give an update, because as you can tell from the title I am still in the process of finding out what is exactly causing all of my issues.

So aside from the typical Crohn’s day to day aches and pains, I have really been wanting to find out the root cause of my arthritis. The last seven or so years I have been suffering from swelling and pain in my larger joints, specifically my hips and knees. I have always just said it was due to the IBD, which I feel is still somewhat relevant and true. However, as the years go on, my days are becoming shorter. My body is deteriorating day by day it feels like faster than it ever has before within the last few months. I find myself crawling into bed because I am exhausted and feel so weak. In June is when I got really worried because a new symptom had developed. My hands were blowing up like balloons. My mom randomly noticed that both hands were very swollen and as the days past they started to ache terribly. So I went to the rheumatologist and a boat load of tests were ordered because clearly the inflammation is not normal. The results? ALL NORMAL. EVERY SINGLE ONE OF THEM. Okay…two were abnormal. My vitamin B12 and vitamin D, but really??? Those aren’t going to help me figure out what this arthritis is coming from. My x-rays were normal, my MRI was normal, and since the initial visit in June I have basically been back to the doctor every three weeks and all of the updated blood work continues to show normal results. As many of you have to understand this is very frustrating to me because now I think I am going crazy. But I know I’m not because everybody around me also sees the swelling. It’s not invisible. So okay, whatever… My team, consisting of my doctor and his nurse practitioner, were not making me feel bad they were actually being super supportive and encouraging me that they are here to help me. That made me really happy because that is all I am asking for. Just help me feel better, please! They did mention the Humira because they really thought that it was a good option for me. Like I said in my last post I was nervous, so I chickened out and asked if there was anything else I could try before I jump into the Humira. They were okay with that and prescribed me Sulfasalazine to try at only 1G a day. I was so happy to try this medication! I started taking it as prescribed and realized that it was kind of hard on my body. The first few days I felt absolutely terrible. My head hurt so badly! I told myself that it takes about 3 months for the medicine to fully kick into gear and it is going to take a couple weeks for my body to adjust and then my headaches would feel better. Well that did not happen. My headaches turned into absolutely horrendous migraines to the point where I was nauseous and my eyes were going numb. I was starting not to focus in class and that is not gonna fly with me. I was on the medication for about a month and a half before I finally just had to make another appointment with the nurse practitioner and explain to her what was happening. She advised me to stop taking it for a week or two depending on when my head started to feel better again and then I could restart it, but only take half of the dose per day instead of the full dose. I stopped the Sulfa on Friday, October 13th and my head felt completely back to normal by Wednesday, October 18th. So good news, the migraines were due to the medication and not another disease process or deficiency. The bad news is that I have been off the new medication for a whole 7 days, today.

Tonight as I am writing this blog it has been exactly 7 days. That doesn’t seem like a long time, but it has been a very eventful week. Since stopping the pill on Friday, by Saturday my hands were blown up like balloons again and by Sunday a new sign popped up. Being on the Sulfa for almost 2 months I started to feel slight relief joint wise so I thought it was working, but obviously I could not deal with a month long migraine that never went away and only got worse after taking naps. I just couldn’t do it. So I woke up Sunday and were looking at my hands and over my left and right pinky and ring fingers little bumps have formed on the top of my knuckles. That threw up a red flag for me. Initially, I thought that I was seeing things and that they were not really there so I sent pictures to friends and every single person confirmed that they definitely saw them. Great. “Here we go,” is what I was thinking in my head. “Add this to the list.” By time Tuesday and Wednesday came around the “bumps,” were multiplying and spreading to other fingers. Today is Friday and they are all over. My hands ache so badly. I saw my GI doctor this past Tuesday and we discussed the Humira option one more time and I am ready. He assured me that if I were to have a stomach flare later in life that there are other drugs that I can choose from and basically he told me to just go ahead and start the Humira. I am on board now because I know that my stomach can be covered in the future. I have options; I will be okay. That was my main concern not necessarily how high risk or scary the drug is.

I saw the rheumatologist last Friday, my “bumps” appeared by Sunday, and my next appointment is not until November. Of course new signs and symptoms appear as soon as you leave the doctors.

Every. Single. Time.

What I am nervous about is the diagnosis. These last few months starting in June my doctor and NP have been trying to diagnose the arthritis I have. They still haven’t 100% given me a diagnosis, but they are leaning more towards it being IBD related than it being Rheumatoid Arthritis. (Good news! If you remember from last post we thought I may have developed psoriasis too, but luckily it was just a dermatitis. Kinda gross.) Anyway, so here is where the frustration comes into play. I know that I have Crohn’s Disease and I feel that part of my arthritic symptoms may stem from that, but in my heart and in my gut I know that something else is wrong. I said that all of my tests came back negative so how could I have another disease process going on? There is this thing called Seronegative Rheumatoid Arthritis and it is essentially RA with normal test results. Weird, right? Leave it to me to pull that one off. The “bumps” that I keep referring to are common in RA and are called, “RA Nodules.” These nodules can form over any joint, but are commonly found over the knuckles of the fingers. My wrists are starting to really ache a lot more over the last two days and RA can target large joints, including the hips and knees, but really focuses on the smaller joints, such as the fingers, hands, feet, and wrists. What a coincidence (NOT!). Besides the joint pain and swelling alone, RA is described as general malaise, or body aches. Truthfully, I feel like a truck has hit and run over my whole entire body. For months and even the last few years I have felt as if I have had the flu, but I just associated it with the IBD. You know when you’re sick and your whole body just aches terribly? Every muscle and every joint hurt to where you don’t even want to leave your bed? That is EXACTLY how I feel. Other symptoms specific to RA are symmetry, stiffness, and low grade fevers. Every single one of joints that are affected are affected on both sides It is never just the left or the right. I am super stiff in the morning and sometimes even throughout the day. I feel like the tin man from the Wizard of Oz. Lastly, feverish. Some days I do feel as if I have a fever, but to be honest I don’t check my temperature so I don’t have technical proof except for feeling hot and cold and just overall crappy.

This has been going on for oh so long. I never really though about RA other than recently. With that said, I know deep down that I have this disease. I have every single symptom. I just need to show my doctor that this is more than just Crohn’s. I am hoping that next time I see them they will believe me when they see the nodules. I am trying to get a new appointment for next week rather than waiting for my next appointment in November. I want to start the Humira ASAP because my body hurts so much more than even last week. I am weak. I am hurting. I am wanting an answer and it better be something other than my stomach disease. This hurt is a different type of hurt that sadly I have been dealing with for years and just didn’t think anything of it. So even though so much has happened since June, I feel like I have moved forward into the right direction and my healthcare team is helping me, but I am also still waiting. It was patiently for a long time and it has become an impatient waiting game now. I am getting more fed up with my body and my absent diagnosis because I know what this is. I will let you know what happens when I know. It should not take much longer because it is right in front of their faces now. No excuses. But hey, if this isn’t RA and I am crazy, then so be it. It just does’t seem that way. Not since this past week.



XOXO, Cait! ❤

Daily Life

What Is Wrong With Me?

It’s July 29th, 2017. I haven’t written in a while, I guess I have been pretty busy, but it’s time to share what has been going on. I have been dealing with Crohn’s disease for seven whole years now. I cannot believe it. How has it been seven years since I was diagnosed and sitting in that hospital bed? That is really crazy. As you know if you’ve been following my blog posts, not only do I deal with the typical IBD belly pain, but also with the joint pain and swelling. I’ve known about the arthritis that comes along with this frustrating disease and have been dealing with it for a very long time. As disturbed about it as I was that I also have to deal with arthritis at this young age, I never really thought about it too much. I know why I have it, I deal with the pain and swelling as best as I can, and I move on with my life. Every time I go visit my gastroenterologist we talk and he asks me how I am doing and pretty much every time I answer with “I’m fine, my joints are just killing me.” My stomach is generally not the problem. I mean I do have my bouts of SIBO (Small Intestinal Bacterial Overgrowth) which causes the terrible bloating and diarrhea that I suffer from, but my labs are always normal and I leave the office feeling pretty okay. Last time I saw my GI doctor he said that wanted me to go make an appointment with a rheumatologist (a doctor that specializes in joints and arthritis) because he just doesn’t specialize in joint pain and he wants to figure out what this is. What if this is something else and isn’t just from the Crohn’s? He mentioned that yes it could all stem from the Crohn’s disease or it may be something completely different and may be another autoimmune disease in itself. Luckily, I love my gastro doctor and he said he’s willing to increase my dosage of Imuran, (My medicine that has kept me in remission for seven years) even though it is at the recommended dose already, or change medications altogether in order to help me feel better. His only condition is that I go see a joint doctor to determine what this really is. Totally fair and to be honest, I want to know what the heck I have wrong with me. One thing that did worry me was the drug that my GI doctor mentioned to me. That drug is called Humira. Everybody has seen the commercials for this drug whether they realize it or not. It’s used for IBD, Plaque Psoriasis, Psoriatic Arthritis, Rheumatoid Arthritis…many autoimmune diseases. Anyways, Humira is for moderate to severe disease. But I’m in remission, right? So why would I need such a strong drug if I’m in remission? That’s what was going through my head. I am willing to try a new medicine if it’s going to help my joints, please give me a new medicine, but I don’t want to mess up my stomach in the process of that. So that’s kinda what I was worried about and my GI doctor agreed. But with nothing to lose, I called and made an appointment with a rheumatologist and I was really excited for that appointment. I just wanted my pain and swelling to go away. The appointment was months out and all I could  do in the meantime was wait and go on with my life. My knees were still swollen and felt as if they were on fire and my hips and elbows ached too. All I could do was pop a Tramadol and keep going. As time went on weird changes were happening to my body. So kinda recently I would say there have been itchy patches along my scalp. Naturally I would itch them and I realized that it wasn’t just itchy, but there were also scabs that appeared out of nowhere and they actually bled if I itched too hard. At first I thought it was eczema, except I realized that eczema does not bleed. My thought after that was psoriasis and that is what I’m still thinking it is. Not only is psoriasis an autoimmune disease, it is also genetic. My grandmother had psoriasis and my sibling has it too. Yay me. Now it may not be that, but all things considered it sounds pretty probable. Luckily if it does end up being psoriasis, it is pretty mild as of right now. Still bothersome though. The next weird thing is my hands. A month ago I came home from work and my mom pointed out that my hands were super swollen. I didn’t notice them at work because I was honestly just busy all day. Once I saw them though it hit me hard. They were huge. The next week straight my hands were blown up like balloons and they hurt so badly. My joints have never been swollen in my hands and fingers and I was panicking. For lunch one day I was eating and saw that my fork left an indent in my finger because of how swollen my hand and fingers were. My poor knuckles were red, inflamed, and on fire. All I could do was ice them and hope that they would feel better. Fast forward to this past week. Wednesday, the day finally came! My appointment with my new rheumatologist was here and I was so excited. I just want to know what is wrong with me because I am sick of being in pain. I mean I have been waking up with swollen knees every morning for years now. I am over it. The normal doctor was on vacation so I was told that I would be seeing his nurse practitioner and a fill in doctor and that I would meet the normal doctor on my next visit. To me that was fine because it at least got me in the door. It is a lot easier to make an appointment with a specialist if you are not a first time patient. At my appointment I told both the NP (nurse practitioner) and the doctor all that was going on and what has been happening recently. I showed them both pictures and explained my medical history and they were both completely understanding and wanted to help me. They took their time with me, did not rush me at all, listened to my concerns, answered all of my questions, and overall I was super happy with them. While the doctor was examining my knees she immediately explained to me that there is fluid buildup in my right knee and she took an ultrasound of it right there in the office to get a closer look. She concluded by saying that there wasn’t a big enough pocket of fluid so she couldn’t drain it. Once her assessment was done we were kind of just talking about deferent medication options. Nothing is set in stone and we have to see what we’re even dealing with first obviously, but she did say that there are options to help me. She mentioned sulfasalazine and then she said Humira. Oh the dreaded Humira. How in the world am I ready for this again? What I mean by this is that Humira is considered a biologic. Basically a biologic is a class of medication, but like I said it’s for moderate to severe disease. I guess I should not be freaking out this much, but it is bringing me back to when I was sitting in the hospital bed and we were talking about biologics back then. I was on Remicade in the hospital, which is another biologic, and it didn’t work. I needed the surgery.  All is fine except for one thing, once you start taking biologics your body builds up antibodies and if you ever stop taking them you are likely not able to use that drug again later on. So if I try Humira and it doesn’t work for some reason or whatever, if I ever need to try it again later down the road, it may not be an option for me. My body might reject it. I guess that is the main concern I have. So if I am not able to have Remicade again and then Humira, what are my options if I ever needed something that strong again. Does that make sense? I mean for my Crohn’s Disease. If I ever start flaring I want to make sure that there are other medications I can take if the Imuran ever stops working. Because I would likely go to Humira if I had moderate to severe Crohn’s disease again in the future. So anyways, there was that medication mentioned again and it kinda scared me a little bit. Now that my exam was over I went down the hall of the office to have X-rays taken and blood drawn. And let me tell you something, when they told me that I had a lot of blood work to do and X-rays to have taken they were not lying! I was standing, I was sitting, I was laying, I was all over the place for all of the pictures that had to be taken. They took pictures of my knees, hips, back, and hands. Then I had the blood work done. Okay…guess how many vials of blood were taken from me. TWENTY! Yes, twenty. Are you shocked because I was. I have never seen that many vials of blood taken from one person at one time. Dang. But it means that they are actively looking for something so they can help me and I am grateful for that. I left my appointment and was completely exhausted. My body hurt all over and I just wanted to sleep. I was at that doctor appointment for three whole hours; not waiting either. I was actively being assessed, listened to, and scanned/poked the whole time. My results from my blood work and X-rays won’t be available for about seven to ten days. Now I am playing the waiting game and I hate the waiting game, as does everybody else. As bad as it sounds, I hope that something shows up in my blood work. I am fearing that everything will check out within normal limits and I will look crazy. I just want to be “fixed.” I want help. I want a new medicine to help me feel as normal as possible. My next appointment is not for three more weeks and until then I will pretty much know nothing. I look forward to seeing the normal doctor and I hope that he is as nice as his NP and fill in doctor. I hope he takes his time and can help me. That’s all I want. I’ll let you know what the results are when I know. For now, here are some pictures of my weird body! At least I know that pictures cannot lie. Sigh.

XOXO, Cait ❤

All About Crohn’s Disease.

How Crohn’s Disease Has Blessed Me!

Being diagnosed at such a young age made me realize that I had to grow up fast. There was no more time for fun and games because I constantly had a brick wall in front of me holding me back. I had to practically live around what my stomach said was okay and what was not okay each and every day. I was embarrassed about every little thing going on within my body. Here is what I’ve learned through all of this, my disease is still a major factor in my life, but I handle it differently now. I have come to terms that this is my life and I have symptoms all the time. They will never go away, remission or not. The difference between me now and me when I was diagnosed is the anger from all of this. The anger used to rule my life and still tries to every now and then, however I refuse to let it stop me from living my life. Being diagnosed has changed me for the better (as crazy as that may sound). I have learned a lot over the last seven years. Here are a few things that I am grateful for since being diagnosed with Crohn’s Disease:

  1. I have become more patient for those that are sick around me. I am more empathetic and have an appreciation for other’s feelings. I have realized that nobody just wakes up and chooses to be sick or asks to be sick and that being sick totally sucks. I now understand that everybody’s sickness is different and may even be invisible like IBD is. You don’t know what people go through on a daily basis unless you are invited into their lives and can step into their shoes for a day. When I hear that somebody doesn’t feel well I take a step back and really try to be understanding and caring. Because let’s face it, being sick 24-7 really blows.
  2. I am forever grateful for every single friend that I met in the hospital. I’m talking about my nurses, techs, and doctors. I lived in the hospital for months, not for a short time, and I met so many amazing warm hearted people who truly cared about making me feel better. Memories flood my brain when I think back to that stay and it’s never if they gave me antibiotics on time, it’s always the fun memories. Happy memories for instance, taking me on my walks around the hallways, helping relieve my pain because I was in agony, playing board games with me, making ice cream sundaes even though I knew I’d regret it later, and all of the singing and dancing they would do for me to get a smile out of my wounded body. Because of them I am now in nursing school so that one day I can make people feel better just like they helped me. My team was amazing and they have influenced me so much. They all rock and “I will survive!”
  3. Finally, I have become stronger and more resilient though all of this. I walk around with swollen joints and an aching stomach daily and many people around me have absolutely no idea. I seem so healthy and happy to everyone surrounding me. The truth is that I hurt all the time, but I am okay. I have grown into a more mature version of myself. I am ambitious and more motivated than ever to help people like the young version of me try to get through their hurdles and learn to soar over them. Sure I hurt and get frustrated with this disease sometimes and I catch myself  asking “Why me?” And then I remember that I am strong enough to handle this and fly with stronger wings than ever before. I want to help the little kids who are sick feel not so yucky because I know what they’re going through and how I can help. Crohn’s has definitely given me some ups and downs, but I refuse to let it win.

I will always have this disease and it will always affect my daily life, but it will never rule me. I have accepted the reality of it now. I tore down the brick wall and have faced it head on. I incorporate fun into my life, I just have to proceed with slight caution. I may have scars all over my belly that tell my story, but they tell the story of how I became so strong and brave at a young age. It’s all positive. I’ve learned so much and met so many wonderful new friends. I do have Crohn’s Disease, but it sure as heck does not have me.

To all of my nurses and doctors out there that were on my team, THANK YOU!


XOXO, Cait ❤

Daily Life


I was going about my day, like usual, when a man in line at the grocery store sparks casual conversation (So far this is normal). He asked about what i’m majoring in. I told him, nursing and then he asked why. I explained to him about my hospital stay and that immediately sparked something in his brain. He knew exactly what he was going to talk about and was very passionate about it too. He started telling me that he was adopted by very spiritual parents and explained to me that I needed to look at the sun. I needed to look at the sun every morning and every afternoon when the sun is between 15 and 20 degrees above the horizon (At this point i’m thinking that this man is crazy, but I didn’t want to be rude or make a strange face so I stood there and listened to his words). Apparently, when the sun is at this angle it is a soft sun and won’t hurt the eyes. “Once you start staring at the sun, you must stare longer and longer each day eventually building it up to 45 minutes sessions (He literally told me to stare at the sun for 45 minutes every morning and every afternoon) without blinking. Staring at the sun cleanses the body and rids all disease and toxins.” He told me that if I did that each day, he truly believed that it would cure my Crohn’s Disease. It took all that was in me for this very long 5 minutes to stay cool, calm, and collected because I was dying of laughter on the inside. He was convinced and truly believed that this would work though. That had to be one of the funniest things that I have ever been told. So hey guys, if you have a chronic disease, I now know how to fix it. Make sure you stare at the sun and it will then be cured forever.


XOXO, Cait ❤

My Story!

My Story (Part Five)…

Dr. Brannon doesn’t work with people like me. Dr. Brannon is a good man and I will always be eternally grateful for him. So my medications were not working, I still was not eating, and the pain was not subsiding…it was time…time for the next step in my crazy journey. What am I talking about??? SURGERY! Yes, surgery. My team of doctors came to me and agreed that a surgeon was finally necessary. I was so excited. I know what you’re thinking…”Why would I be excited about yet another surgery??? Haven’t I had enough?” Yes! I did have enough which is why I was so, so excited. You see, if medicine is not working and you literally feel like death for months and you know surgery may make you feel better, then bring it on. I was so fed up with everything. All I wanted was my intestine removed so I could finally feel better and eat and go home to see my friends and sleep in my own bed. Was that too much to ask for? I remember wanting it for weeks and weeks, but all of my doctors kept holding off because that is the absolute last resort. Once they all agreed and Dr. Brannon was brought in, it was real. It was a serious case because Dr. Brannon wasn’t just any surgeon. Dr. Brannon is an ADULT surgeon who specializes in colon cancer, Crohn’s and UC. He literally does not touch pediatric patients…ever. Dr. Brannon is an adult colorectal surgeon. He works on adults and adults only. Do you guys get it? That is how intense my insides were. The pediatric surgeon that had been performing all of my abscess drainages wouldn’t touch me because I was too complicated for him so Dr. Brannon was my only option. I was REALLY lucky because he actually agreed to work on me. I was fifteen years old weighing basically nothing and he was going to perform surgery on me. It is really rare to have an adult surgeon agree to that. He is seriously a blessing. So after a couple weeks of exams and preparation, it was about time; there was just one thing I needed to know. This surgery was not going to be an easy surgery and I am GOING to come out with a BAG. What is a bag, you ask??? Ya know, like a colostomy bag. So my insides were destroyed enough that Dr Brannon did not think that he was going to be able to reattach the “healthy” parts of my intestines back together. The outcome was going to be a bag that my intestine is attached to to hold all of my poop. Yes, my poop. It is a bag that is attached to the outside of your abdomen, that is then attached to the intestine, so instead of pooping into the toilet like a normal person, you just empty your bag when it is full. No more pooping for me! I was actually excited, guys! That meant that I didn’t have to worry about what I ate, no pain, no having to stop what I’m doing to use the bathroom, no awkward school days, it was actually going to make me feel normal and have a happy life again. I could not wait for the day to actually get there, When it was finally game day I was smiling with excitement and cheering with my nurses down the hallway as I was wheeled out. I was about to feel better and be free from pain! When wheeled into pre-op, I remember having the bed all the way to the left of the room next to the wall and if I remember correctly, I may have been the only patient in that pediatric pre-op room. The room had a few toys and was colorful. I was handed a bear dressed in a pink Buccaneers cheerleading outfit for good luck and was waiting for Dr. Brannon to come in. Once he came in and checked me I was off. Mom watched as I was wheeled down the hall into the huge elevator to be operated on. I remember being lifted by a sheet underneath me from the stretcher to the actual OR table and was freezing! The OR has to be sterile, I know, but it was SO COLD in there. I looked up and saw that large circular light that is in all of the movies, I saw the tray for the utensils, and then I was out. Don’t remember anything else except waking up in the post-op room. So when I woke up mom was there and apparently everything went well. The surgery was a whole 6 and 1/2 hours long. I never realized that it was going to take that long. Props to Dr. Brannon! The only strange thing after surgery was my heart rate. A normal resting heart rate should be about 60-100 beats per minute…mine was at 180 beats per minute. I was then moved to the PICU, or the Pediatric Intensive Care Unit. I didn’t really know why I was there at first, but I couldn’t really stay awake long enough to care. Once I was awake for more than 30 seconds at a time I realized where I was and was told why. The nurses and doctors kept asking me “Do you feel like you just ran a race? Can you feel your heart beating really fast in your chest?” I remember responding “No” to everything because I truly didn’t feel anything out of the ordinary. My heart felt fine to me. So there I was laying in the ICU room with a thousand cords hooked up to me and trying to fight this post-anesthesia sleep. The room itself was so tiny and behind the bed there was just a wall of medical outlets for wires, screens, suction buckets, so much stuff. It looked like the side panel of a firetruck with all of those buttons. There was no room for a couch or a recliner for mom so she had to sit in this small chair. There was a huge clear sliding glass door directly in front of the bed with a curtain for privacy, and there was also no bathroom. There was only a tiny toilet attached to the wall to the left of my bed. If I had to go, I needed to close my curtain and pray that nobody walked in. ALSO!!! Speaking of bathroom issues. I DID NOT HAVE A BAG. I was very upset about that. Again I know what you’re thinking..”You should be happy. Why would you want a bag?” Yeah, yeah, yeah. I was mad because that meant that I actually had to watch what I could eat. I actually have problem foods to lookout for now. My life is still not normal because I am going to be in the bathroom the whole day. And I was worried about pain. But oh well…I did not have a bag. To me, that was sad, but that meant I actually did better than expected. Dr. Brannon was 99.9% sure I was coming out with one so for him to be able to get all of the diseased portion of my intestine out and me actually have healthy tissue left to be reattached was amazing. He was surprised by the outcome. It was actually a good thing. He also did not have to open my whole abdomen up either, he went in laparoscopically. The incision was supposed to be a vertical incision from the very tippy top of my abdomen, go around my belly button, and then all the way down to right above my underwear line. Instead, he and his partner decided to do it laparoscopically and only make it about three inches long below my belly button. Still painful because he moved all of my insides around and pumped air into me to blow up my abdomen (for better vision), but less of a scar and less scar tissue later on. While in the ICU I had a catheter for the first 24-36 hours so I didn’t have the urge to pee at all. That was so nice! I had no desire to get out of bed because I was clearly in so much pain and having a catheter was such a good surprise. Once it was taken out though, then that meant I had to get up to pee. Not so fun. Even though I just had major abdominal surgery and I had a tube coming out of you know where to hold my pee, I still had to get up for my daily walk. I had a nurse behind me pushing my IV pole and holding my urine bag, and I was hobbling up and down the hall trying to stay upright without getting dizzy, walk normal without stepping on my catheter, and hold my gown closed. What an adventure that was. My nurses from the GI floor came to visit me too. They’re so cute. I was in the ICU for only a few days and then I was sick of it. I wanted my room back, I missed my normal GI nurses, and I missed the privacy of having an actual door. I wanted out. Once rolled back to the GI floor, I was more alert, but still nauseous. I remember feeling fine until I was transferred from the stretcher to my normal bed. Instant puke from the movement. Thanks, Morphine. LOL, that hurt. Freshly cut open abdomen and then puking made all of my abdominal muscles tense up. OUCH! So now it was healing time. I was regaining some of my strength, I was going on my walks, and I was FINALLY starting to eat. It was days after surgery when I was able to go into the ice chips, then clear and full liquid diets. Once Dr. Brannon and Dr. Winesett cleared me for actual food I was so exited, but was also so scared. I literally had a fear that eating food would make my intestines break apart where they were just sewn together because it was a lot to digest. HAHA! Anybody else with this surgery ever think of that?! Dr. Brannon definitely laughed at me and told me it was fine and that I could eat normally. I think my first meal was chicken tenders and they were good! I could actually eat without pain! I was ecstatic. I had to poop right away, but I could eat. I had a nutritionist come in to talk to me multiple times to tell me what I could and could not eat. Basically, I was allowed to eat anything, but only a tiny amount of fiber because of the section of intestine that was removed. I had my terminal ileum removed (the last part of the small intestine that attaches to the cecum of the large intestine), which is the part that digests fiber. I had to watch fruits, vegetables, seeds, nuts, whole grain, anything healthy. I could eat all the fat in the world though which is what I needed anyway to help me gain weight. As days went on I was able to have my final drain removed out of my right side! This was crazy. I was eating and not throwing up, I was pooping, there was no pain, I was doing all things right finally. I was kind of scared for Dr. Brannon to remove this tube from my insides because I thought it was going to hurt, but luckily he was right and it didn’t. It was gone. I was tubeless. I hadn’t been tubeless in MONTHS. I felt free. Then came the TPN. I was able to get unhooked from the TPN for a few hours a day to ween off of it. I was actually unhooked from all wires. It was nice. When the TPN and medications were finally able to stop was the day I was able to leave. I was dismissed from all doctors except Dr. Winesett, Dr. Cartaya, and Dr. Brannon. I was able to leave though. Was this actually happening? Holy cow! It was. The PICC line had to be removed from my arm, which was so weird. I watched them take it out, and I couldn’t feel it leaving my body, but I remember seeing it being pulled out and the tube was never ending. That catheter was so long. That also left me with a new scar on my inner arm. I was so excited to sleep in my own bed. I was really sad to say goodbye to my new family though. My hospital peeps were my second family. That was for sure. I mean I was with them for months. They took care of me. Minutes before I left all of the nurses came into my room and sang and danced for me. They all got in a line in front of my bed and sang together “You will survive” instead of “I will survive” to me. They changed the lyrics for me and I will never forget that fun moment. The day I was able to leave was July 7th, 2010. I was in the hospital admitted as a patient for 13 weeks straight, 3 whole months. I was admitted April 9th and left July 7th. Can you image yourself being separated from society and friends for 3 months straight??? No work, no school, no friends. It takes a lot out of you, that’s for sure. Going home was nice, but it felt weird. I felt like it was temporary and that I was going to have to go back to the hospital that night. Sleeping in my own bed was the best feeling ever! No IV in my arm, no IV pole alarms going off, no drains hanging out of me, no middle of the night medication or scale interruptions, just sleep. 


I know, bad quality, but this was on one of my okay days when I was able to take a walk longer than just around the hallway. I ventured outside and you can easily see how skinny I was, my HUGE bag of yellow TPN, and of course myself holding my drain. There are two tubes there- one is my drain, and one is my IV. Kinda hard to tell. FullSizeRenderThis is the Pre-Op cheerleader bear that I received. Still have it today in my bedroom.


Definitely a gross picture of me, BUT it shows my swollen face from the steroids and this was the last picture taken of me in the hospital room as a patient. It was the afternoon of July 7th. Goodbye, St. Joes!

XOXO, Cait ❤

My Story!

My Story (Part Four)…

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 ❤

My Story!

My Story (Part Three)…

Riding backwards in an ambulance is terrifying. I was nauseous already and had to lay in this huge, sterile, rocky and unstable box.I was facing the street, but really couldn’t tell where I was going because I could not see out the sides, only through the two little square windows on the back doors. I remember seeing the people in the cars behind us wondering if they could see me staring at them. It was a very awkward situation because there was no where else to look. Could they see my face? Or maybe the windows were tinted enough to where all they could see was darkness. I really had no idea and I still don’t really know the answer. I hope they couldn’t see me. That would be weird. As the ambulance driver took me to the new hospital (I had no idea what hospital I was going to yet), I remember my goal being to not throw up. You feel every single bump in that thing and whenever it turned, I swore we were going over. I thought it was going to tip over so many times which made me more nauseous because of the anxiety of tipping. I was a mess, haha. BUT! There was no vomit!!! Score for me! When we arrived to the new hospital I could see all of the colors everywhere like a children’s hospital should have. Brandon was not like that. It had animal murals on the walls on the pediatric floor, but this place had colored furniture, colored walls, colored doors…it was awesome! It didn’t look so scary and sterile like Brandon did. The paramedics wheeled me to the right of the main children’s check-in desk then down this clear glass tunnel to the elevators. I was going up to the second floor to get settled into my new home for a while. I was on the TCE floor! I was dropped off into my new room and was on the right of the colorful hallway. You see unlike Brandon, this hallway was more like a housing development because instead of only being able to walk up and down the hallway a million times back and forth, you could actually go “around the block” in a circle. Pretty cool (Oh the little things that made me happy). So my room was cute. It was a tiny room too. I remember that for sure. It had a bed (duh, obviously), a blue couch against the wall of windows, a nightstand, a TV in the corner hanging above a little coat closet type thing, and a bathroom door. There was no room for anything else. So I scooted off the stretcher and shuffled over to the bed to lay back down. My IV pole was to the right of me and I remember looking down to find something terrifying. I didn’t feel anything strange, but as soon as I saw it I freaked out. My left hand with the IV in it was blown up like a balloon! What?! So my fingers were fine, but my hand itself was blown up like a frog’s hand! I didn’t know what to say, who to tell, or what to do because my mom was still parking her car and I didn’t know any of the nurses yet. Then my nurse walks in. It was perfect timing. She was the charge nurse, Ahlam. All I did was look at her in a panic and lifted up my left hand to show her. I didn’t say a word because I was in shock. So apparently all it was was fluid from the IV. It slipped out of my vein and I was fine. She took it out and the fluid took a few days to get reabsorbed into my hand, but all was well. Such an easy fix, but I had never seen anything like that before! Great first impression…HA! Once mom came upstairs I was getting settled and I let mom go back downstairs to the cafeteria to eat because she was starving. I was told that the cafeteria was really cool and had a lot to choose from, but I was not hungry at all. In fact my stomach was killing me. A few minutes later I remember seeing a doctor rush in to see me. His name was Dr. Cartaya and he was my new pediatrician. Dr. Cartaya was amazing! He stayed super late just to meet me and check on me before he went home to his family. I arrived at St. Joes somewhere around 7pm. That is super late! He wanted to see if I needed to be in the ICU (Intensive Care Unit) or not because of how sick I was. I somehow passed the test and was able to stay on the normal GI (Gastrointestinal) floor on one condition…I needed to be in the room immediately next to the nurse’s station. I was the lucky winner. I was probably the most ill child on the floor that night. Maybe I’m wrong, but who knows. So in the middle of the night I was moved to room 226. It was just right of the nurses and I was checked on multiple times. So blah, blah, blah, the night goes on and I try to get some sleep. Try is the key word there! 🙂 7am comes around and a new doctor walks in to see me. It’s not Dr. Cartaya this time, but a specialist instead. She was a Gastroenterologist and her name was Dr. Winesett. I remember her coming in and sitting on the bed next to me. She introduced herself and seemed a little weird at first just because she got very close to my face. I was still half asleep and as she talked to me I remember trying to slowly back my face away. She was super nice and understanding, just got a little close for comfort. But whateva! She then moved to the couch and sat down with my mom. She held her hands and was whispering to her so I couldn’t hear what they were talking about. She did good because I was clueless. After a few days passed all of these new tests were being ordered. I was being wheeled downstairs so many times. I continued to get CT’s ordered, but I was used to those from Brandon. They were easy. Except now they added dye’s. What was this? The radiologist added a dye to my IV that made a warming sensation go throughout my entire body. It was so weird. And it made me feel like I had to pee! I had to try not to move, hold my breath, and not pee while getting a CAT Scan now. It was kind of a struggle, but I managed. Another big test I had done were ultrasounds. I don’t know how many ultrasounds I had done while admitted, but I had a lot. So days passed and I was just getting worse. It was May so I was almost 15. I asked Dr. Cartaya if I was going to be home for my birthday on the 17th and he responded with “You’ll be home for you 16th birthday!” and smiled. Typical Cartaya making a joke. He always avoided my questions or answered with “I don’t know.” Not in a bad way, it was just Dr. Cartaya. Sarcasm made it better. He was a pain in the butt, but I loved him! He made me happy when he came in the room because I could really tell he cared about his patients and he was really worried about me. Eventually, I just started calling him “Dr. I Don’t Know” because that’s how often he saw me and “answered my questions.” After a few weeks of CT’s and blood work and what not there was a huge test ordered. It was called an upper GI series, or an upper GI follow through. Can I just explain to you all about how gross this test was?!?! So they took me downstairs to the room where the test was going to be held. It was such a tiny room with such a huge X-Ray machine in there. The x-ray tech explained to me that she was going to give me a drink called, Barium, and I had to drink it then lay in different positions to watch it go through my intestinal tract. Seriously, I never ever want to have to do this test again. Barium is an element on the periodic table. You might have heard of it before. I should not have to drink it. I’m pretty positive that they literally take Elmer’s white liquid glue and mix it together with crushed up sidewalk chalk because that is seriously what it looks like and tastes like. It is so thick that if you turn the cup it leaves a white film from where it used to touch. My stomach is now nauseous thinking about it…yay. I will post a picture of it below so you get the joy of understanding what this crap looks like. You don’t want it, I promise! So I had to drink two of these bottles and I think part of a third one. It lights up on this x-ray that is being taken so you can see it going down your intestines. It was actually really cool to watch! This “torture” took three hours though. I had to drink, then walk around the room carrying the cup of barium while pushing my IV pole, then lay sideways to take a picture, then drink and walk and lay for a picture, then drink and walk….FOR THREE HOURS! This room was smaller than my room upstairs. It sucked. Then after the three hours I had to use the bathroom. Can I just say that the aftermath of this barium wasn’t pretty. My stool looked white from the barium and made it look like cookies n’ cream ice cream. Nice (not nice). It was gross. The next tests that were ordered were both a colonoscopy and an endoscopy. You know, the things that old people get. A camera had to go down my throat and up my butt to take pictures of my intestines. Yeah, there I was at 14 years old getting a test that an 80 year old gets. Cool. So they wheeled me downstairs to the IR (Interventional Radiology) pre-op type room to get me prepped. Once I was in the actual room of the procedure they had me lay on my right side, put my left leg over my right leg so I was all exposed, and then stuck a plastic white donut type thing in my mouth to keep it open for the camera to go down. All I can say is thank goodness they knocked me out for that because that would have been embarrassing. It was embarrassing enough knowing that I was about to be completely violated. Meh. After my tests were completed I was wheeled back upstairs yet again. I laid in bed for hours and hours doing absolutely nothing. Being locked up in a room for months at a time really gets to you emotionally. I remember laying in bed with the TV on, but it would be on mute because I was sick of watching the same shows. I used to clench my blankets and sheets to help with the pain of my insides screaming at me. All I wanted to know was what was wrong with me. I became super depressed from not seeing my friends and for feeling so bad for so long. Child Life specialists used to come into my room to help cheer me up by giving me crafts, a DVD player to watch movies, games, you name it, but all I wanted to do was be left alone. I felt like I was too old for the silly games and crafts that they were handing me and I was just “done.” I just wanted to feel better and go home. After all of the endless tests being done, Dr. Winesett was right. Her gutt was right all along. I have now been at St. Joes for weeks and when Dr. Winesett held my mom’s hands the first morning I was there she explained to her that she thought I had Crohn’s Disease. Of course I had no idea about that, but my mom knew. How did Dr. Winesett know that I had Crohn’s without having done any tests or exams??? She literally met me once for like 5 minutes. She’s the bomb. I love her, too. She and Dr. Cartaya were my buddies. So the tests confirmed it and at 15 years old I found out that I had Crohn’s Disease. I had no idea what this was and wanted nothing to do with it at the time. Dr. Cartaya came in to explain it to me and I was so mad to find out that something was actually wrong with me. Like for real wrong. It is never going to go away kind of wrong. I was so devastated. “So now that I knew what was wrong I can go home now, right?” I asked myself that and Dr. Cartaya that so many times. “Can I go home now? Please?” I had already been in the hospital for over a month now. I mean between the two anyways. It was almost my birthday for goodness sake. Let me leave now! I missed so much school and I missed my friends. But most importantly I was scared that I was going to have to be held back for missing over a month of school. I was going to be so upset if I had to graduate a year later than all of my friends. That was my fear. I was ready to go back to school and I never thought I would say that in my entire life. “I just want to feel better and go home now.” I said that to myself so many times. Yeah…no. I thought I was close to being able to leave, but that was just me climbing up the hill of the roller coaster. I was only half way there. Not to the top just yet. I had a lot coming at me. Who knew? Not me.

Barium…see the thick film left on the glass??? SO NASTY!!! The right picture is an actual X-Ray taken from that day in the hospital during those three miserable hours. It was cool to watch it move down throughout my GI tract though. I will admit. Still not worth it…sigh.

XOXO, Cait ❤

My Story!

My Story (Part Two)…

April 9th, 2010. I will never forget that date. What happened in that OR? What could have possibly made the surgery last four whole hours instead of Dr. Delgado’s confident one and a half hour estimate? It turns out that my pediatrician was right. Her gut was right all the way back in February. It was really appendicitis. A lot of people would be mad at her for not treating me correctly months ago, but I don’t blame her at all. She did all that she could and took the correct steps in order for a proper diagnosis. In fact I love her more for what happened, but I’ll tell you why later. While in surgery, Dr. Delgado first went in laparoscopically (Using smaller incisions and tools to look around and operate leaving the patient with smaller scars and a faster recovery time), but he then realized what exactly he was in for. So a normal appendectomy (the removal of an appendix) takes about an hour just like he said, but my appendix was ruptured (meaning it exploded) and it was ruptured bad. Remember from the last blog when I told you I hit my head after passing out in the bathroom in February??? Yeah..that is the exact time my appendix ruptured. And I know this sounds crazy, but now that I know what happened, I can promise you that I felt my appendix actually rupture. At the time I had no idea. Now looking back, I can remember feeling a slight relief after feeling a pop. The normal person cannot take the pain and cannot survive a ruptured appendix usually after two days. I know that’s morbid, but it is the truth. It can kill you, it can kill you fast, and the pain is completely unbelievable. After walking around with a ruptured appendix for two whole months, TWO MONTHS, I finally went to the ER. Dr. Delgado had to open me up the old fashioned way and make a larger incision than he wanted to because of how badly this thing was ruptured. I swear i’m not making this up or sugar coating this…but he said the appendix and all of the toxins from it were hardened like stone onto my intestines. That is how long it has been sitting there like that. Do you understand how insane that is?! My surgeon had to sit there and scrape off each layer of poison from my intestine without puncturing it because if my intestine got punctured, then that would be bad. I would have to have that repaired and…well, it’s not good. Dr. Delgado is a general surgeon. He can do an appendectomy in his sleep because that is how common they are and how often he gets to perform that specific procedure. I promise you he will never forget my case. Four hours is unheard of for that surgery. I was seriously so messed up and honestly should have been dead two months ago. Why did my pediatrician miss this then? She thought it was my appendix months ago! Well, in the stat ultrasound that was ordered by her, it didn’t show any inflammation because of my weird anatomy. Basically your appendix hangs off of your lower right intestine (the cecum to be exact) and sticks out into your lower pelvis. It’s really easy to notice and point out! But mine for some random reason was tucked behind my intestine so that it was completely hidden. That’s why her initial diagnosis made perfect sense. Both the ultrasound tech and radiologist didn’t notice any inflammation because it was not visible! It wasn’t anybody’s fault for not catching it sooner. ALSO! Feeling fine right after having an ultrasound to check for appendicitis is not normal at all! Just sayin’! I’m just weird! So when Dr. Delgado finally stepped out of that OR drained and pale faced to tell my mom what happened, she was able to take a sigh of relief. I’m fine and he is done. He told my mom that it was the absolute worst appendix he had ever seen in his life. Yay me, right? HA! After the surgery I remember being in post-op seeing my mom rush in. She explained to me that her coworker was in the waiting room for moral support and then I remember telling her to go see her. “Why are you here if she drove all the way over here from Tampa to see you?! Go see her, i’ll be fine!” I’m taking points for that. First time in the hospital, first time having surgery, and still putting my mom first. She deserves it. So I am told that I will be in the hospital for a whole week due to the intense surgery. I then remember being so pissed because hello, I was going to miss my entire spring break. And OH NO! I forgot my phone at home and forgot to text Kelly about where I was. She and I walked to the bus stop every morning and we were going to relax at the pool afterwards. I didn’t even call her to tell her where I was. I never even showed up to the bus stop that morning! I felt like a bad friend. Eventually she found out. Once I was wheeled into my actual pediatric floor room and got out of post-op, the on call pediatrician, Dr. Monaco, was looking at my tiny skeleton body laying on my bed, passed out of course from the anesthesia still wearing off, and was concerned because of how pale I was. He asked my mom if I always looked like that and immediately my mom responded with no. It was time for my first blood transfusion. I lost too much blood during surgery and I apparently matched the white bed sheets. I still do not remember this, but my mom will never forget. I looked dead. I was so skinny I didn’t even raise the bed sheets. The bed looked flat and I looked completely lifeless. Once I woke up again and realized what was going on I saw this tube coming out of me. What the heck was this??? It was disgusting and warm and it was LITERALLY coming out of me (I can actually say literally in this case too! It makes sense.)! This tube was called a drain. Many people have drains after surgery to help all of the infection and toxins escape and to avoid developing abscesses. I have never been so grossed out in my entire life. I didn’t want to look at it, or feel it against my skin, or to smell it…it was repulsive! And it smelled weird, but I just can’t describe it. It was my infected insides leaking into a tube coming out of my body. *PUKEEE* All I know is that it made me nauseous. I hated it. I can’t express that enough. So I then needed to pee. The IV pumped so much fluid into my tiny body and bladder that I had to go really badly! My first nurse was my amazing night shift nurse, Susan. I will never forget Susan. She was so sweet and complete opposite from the nasty ER nurse (I guess technically she was my first nurse, but I don’t count her. I don’t even remember her name.). Susan wheeled over the portable toilet for me to use because I was first of all, loaded up on drugs, and second of all could barely walk from the pain. I was already embarrassed. Barely awake and already being embarrassed. What 14 year old girl has to use one of those toilets?! Only 80 year olds use these. It was so humiliating. Whatever. I had to pee and it was closer than the bathroom so I used it. Wait…it gets worse. I couldn’t move my arm back far enough to wipe. Sweet Susan had to help me wipe from using the bathroom. I was 14 years old and needed help using the bathroom. I hated every second of it (Susan, if you’re reading this, I’m still really sorry.). So I ended up being admitted for a whole week just like Dr. Delgado and Dr. Monaco said, but apparently for all that I went through I recovered remarkably well. I got to leave the following Friday! No more drain, I was healing well, and was walking and eating fine. I was so happy! I gave up on missing spring break and was thankful that I didn’t have to miss any school work. No make-up work for me. It was that way for a reason I guess. Little did I know that over the weekend my health would decline rapidly. I threw up multiple times, was light headed, and could barely breathe in the shower. The steam usually helps open up your lungs so it’s easier to breathe, but it only made it worse for me. Monday bright and early I was headed straight to my everyday pediatrician’s office. Her name was Dr. Champoux (sounds like shampoo and I love every second of it). She was concerned with my breathing so gave me a breathing treatment. It didn’t help. So guess where I ended up next! Here we go all over again. Back to Brandon hospital. I got readmitted due to the vomiting, breathing, and especially since this was all after a surgery the week before. Little did I know that this day was the beginning of my roller coaster ride. I thought I would be there for only a few days and would then leave again like the previous week. Boy was I wrong. It started off with me entering my room and having a new nurse enter an IV into my arm. That’s harmless and by this time IVs didn’t bother me. I mean I was already there for a whole week two days ago. I was used to them by now. I extended my left arm out for her to insert the needle. I kid you not, she took 30 whole minutes trying to insert that thing. I remember telling her multiple times that she should try the other arm because clearly this arm was not having it. I swear she took 30 minutes. No exaggeration. Obviously she was not like Susan. Anyway, after that was finally placed (in the right arm like I told her, might I add), I received many antibiotics because it turned out that I developed my first abscess. For anybody who forgot or missed my previous blogs, an abscess is literally a balloon of infection within your body. It’s a puss ball. Gross, I know. So antibiotics were given and they should’ve helped me get rid of it, but lucky me it was playing hard to get and it wouldn’t leave. I was given antibiotics for the abscess for multiple weeks without a change. So what was the next step, you ask? Surgerrrryyy. Yes, surgery. Surgery again. This is my second surgery now. I was wheeled back into surgery for an abscess draining and guess what I got when I woke back up in post-op! Another drain! Ewwww….I was so depressed that I had another drain. I could not stand it. Also, Dr. Delgado decided to go in through the same incision that he made with the first surgery and I do not appreciate that. The recovery pain was worse the second time around because he went through scar tissue and ugh, it seriously hurt so bad. Once I was wheeled upstairs I was pleasantly surprised to see my favorite day time nurse, Meri! I love her just like I love Susan! They are seriously both so sweet and caring. Meri is also genius. She came up with the great idea of putting a glove over my drain so I didn’t have to look at it! I’m telling you it looked gross. It was gooey, slimy, pinkish/redish infection leaving my body entering this little clear bulb at the end of a tube that got to lay next to me in bed. I also hated when the nurses had to empty it and measure it. It smelled so bad! Anyways, thanks to hero Meri, I did not have to look at it anymore so that was a plus! After a few days of dealing with the smell of the drain and the antibiotics seeping out of my pores I could not take the smell of my room anymore. I made my mom go out and place pop-up air fresheners in every corner and also on my night stand roll-up bed tray. Nobody else thought that my room smelled bad at all, but I was nauseous from it 24/7. I even had coffee beans next to me so I could smell those too. It was all of the medication being pumped into my body. My nurses all called my room the “good smelling room” and laughed every time they entered. Haha! Besides gaining a stronger sense of smell throughout my whole stay at Brandon hospital, I also always had a drain the entire time so I ended up learning exactly what should and should not be leaving my body. I knew what color was a good drain color (meaning it was not blood and it was infection leaving which was a good thing), but I also ended up knowing what was not a good color. One day I was using the bathroom and when I was wiping I noticed a not so good thing in the toilet. I called my nurse over to show her and I explained to her that I thought it was blood in my stool (my poop) which I had never seen before. A little bit later that day I saw clumps of brown “stuff” leaving my body into my drain and I knew that was not normal. By this time I was in Brandon hospital for a month. I was now May. I continued to develop abscess after abscess, but luckily the rest could be controlled with IV antibiotics so no more surgery for me. I never had the drain removed and I was continuing to decline. Meri threatened to stick a feeding tube down my throat more than once because I refused to eat and getting me to go on walks down the hallway were turning into a daily struggle. The abdominal pain and nausea were returning and worse than ever before. I continued to develop 103 degree fevers and refused to eat (Until I was threatened with a tube of course. Then I would force something down, but always regretted it due to the pain). After all that I was put through there for a whole entire month between the endless CT and ultrasounds to check on my abscesses, the blood that would have to be drawn at 3am for testing, the many medications that I had to mix into pudding and/or applesauce or juice (seriously, that was the worst part! This medicine made me want to throw up. It was little granules that replicated sand from the beach, I swear, that I had to mix into pudding or applesauce OR apple/grape juice. Those were my choices. It was the most disgusting thing that I had to get down without throwing up and I had to take it every three to five hours or something ridiculous. Including in the middle of the night by the way. That’s right. My nurses would have to wake me up at 2am specifically for me to eat this gag-inducing pudding or to drink this sandy grape juice. And all of the “sand” sunk to the bottom of the juice too. It didn’t dissolve or mix or anything. It makes me gag just thinking about it.), the many IV medications that would seep through my pores and make me nauseous, everything…all of it seemed pointless because of how I was reacting to everything. I was not doing well and Dr. Monaco just did not know why I was deteriorating. They had to tell me goodbye because they were not able to help me anymore. Brandon did not have the necessary specialists that I needed to help treat me. I was so upset because I don’t like change. I knew my doctor, I knew and loved my nurses, I knew the hospital and I had to leave. “What if I don’t like the new hospital or what if the doctors and nurses are mean? Can’t I just stay here!?” I thought. I asked multiple times if I could stay, but I had to go in order to receive the correct treatment. So fine. I had to leave the familiar faces that I was with for a month. The ambulance arrived to transfer me to the new hospital. I remember sitting on the edge of my bed in my gown throwing up into a pale, rose pink, square bucket right before having to walk my weak self over to the hallway. I had to ride on one of those scary bright yellow stretchers. I now hate those stretchers. I was completely nauseous that day of the transport and once I was strapped onto the stretcher, out of nowhere the paramedic flung the stretcher bed up in the air to lock it into place and made my stomach drop as if I was falling down a hill on a roller coaster. Needless to say it made me even more nauseous and now I hate those nasty, yellow stretchers. LOL! Also…the straps on the stretcher were disgusting and they grossed me out so hard. So mom and I were off! Off to enter my new hilly adventure. The real ups and downs were about to happen and we were both so clueless! Goodbye, Brandon! Goodbye, Dr. Monaco, Susan, and Meri! Thank you for everything and I will miss you tremendously! I never anticipated what was about to happen next.

My skinny self leaving the comfortable Brandon hospital.

My skin and bones leaving my comfort zone…B tower of Brandon hospital.

XOXO, Cait! ❤

My Story!

Here is my story (Part one)…

So it was February of 2010. It was a school day and I was a typical freshman at 14 years old trying to get through high school (That is enough for any kid to handle). I was experiencing some pains in my stomach, but didn’t really think much of it. I figured they would pass and go away just like everything always does. I have never been sick a day in my life. Maybe a cold or a sore throat, but seriously, I have never even had strep or pink eye. I am never sick. So just like everything else does, this pain would eventually go away on its own. One morning I wake up at 3am to use the bathroom. I remember that the abdominal pain was unbearable, but I really had to pee so I hobbled out of bed and sat on the toilet. As I released the pressure to empty my bladder, my abdomen was in the worst pain that I have ever felt in my entire life. Peeing itself didn’t hurt like it would if it were a bladder infection, but my stomach actually hurt from letting go of the pressure of trying to hold in my pee. It’s really weird to explain. After I pulled myself up to flush and wash my hands, I got dizzy and passed out. As I fell to the floor I remember hitting my head on the toilet. I was only out for a second because I got right back up and went back to bed. I know…this is probably the most stupid thing I could have done, but I was not going to wake my mom up because of me and disturb her sleep. And I still thought it would pass. Anyways, at 5am she found out what happened because I was moving like a sloth getting ready for school. Once she heard what happened exactly I got a lecture and we were immediately off to the pediatrician’s office because I was not going to the ER (Emergency room). My doctor was super concerned that it was my appendix and was making me jump up and down in the middle of the office to see what was going on with me. Okay, so apparently if you have appendicitis, jumping hurts reallllly bad and it’s a sure sign. Well, not me! I jumped and jumped and was looking at my doctor like she was a crazy person because nothing was happening. After that she made me go for an emergency ultrasound to double-check and to see what it could be. When the test was done my mom and I went to the movies and then out for lunch while waiting for the results. I felt fine. Literally like nothing happened. Ate everything on my plate and was laughing as the doctor called us. So it was not appendicitis, but had something to do with my ovaries. I honestly have no idea what it was called, but basically it feels exactly like appendicitis, can come and go, and it made perfect sense. So great! We have a diagnosis, it is harmless, and we can all get on with our lives. Well…not quite. My mom and doctor thought everything was going fine, but as time went on I kinda knew something was up. The pain was only getting worse, I was not eating or drinking due to the pain, and I could not continue doing my normal activities. I remember sitting in my classrooms and just clenching onto the desk. I was an A student and never got into trouble. I always did my homework, never talked over the teacher, I was basically an angel student. Well, not anymore. I still did not disrespect the teachers of course, but when it came to classwork and homework, forget it. I watched the clock tick so slow as I counted down the minutes until I could finally go home. I never payed any attention because all I could focus on was the pain and how much it was not fair. My grades were slipping so fast and I was so worried that my mom was going to find out. I remember trying to hide the clenching. If I had to grab my thighs or the chair instead of my desk so my peers wouldn’t see my white knuckles then I did that was what I did. I did not want to be looked at funny or weird. I was a freshman…that was enough to begin with. As the weeks went on I decided to talk to both my english and physical education teachers because I trusted them not to tell anyone and I wanted to let them know what was going on. I remember in PE one week we were talking about healthy BMIs and weights and I was concerned. After everybody left the classroom to go to their next class, I stayed behind to talk to coach about what my weight should be. I am 5’1″. That is short, but my weight should have been between 100 and 110 pounds according to the text-book. She asked me what my weight was…I hesitated and said 86lbs. 86 POUNDS! Okay so to start off with I was tiny at 97lbs, but at 14 years old, 86lbs is way too tiny. I remember coach’s jaw dropping when I told her that. She became concerned really fast and threatened to call my mom soon if I didn’t tell her what was going on myself. She used to ask me what the pain felt like while we were all in the locker room changing because I never wanted to dress out and participate anymore. I told her that it felt as if somebody was taking a butcher knife and stabbing it into my stomach then twisting it all around my intestines. Honestly, that is the last thing you want to hear from your student because you know that is not normal. Usually it’s “Oh, I’m going to throw up,” but not a knife! So okay…eventually I gave up and told my mom because of coach. It was either her or I telling her and if coach told mom before me…I would have been in trouble. So it was on April 9th, 2o10 that it all happened for real. I woke up at 5am to get ready for school. It was the Friday before spring break and I was excited to meet my friend, Kelly, at the neighborhood pool after we got home from school. I was excited for no school for a whole week. Everything was going to be great. Except one thing. At 5am on April 9th, I never went to school. Mom rushed me to the ER instead because I finally said that I basically give up and this pain was going to win. It has been there for 2 whole months now and I needed relief. I somehow found the strength to walk into the ER at 5am, lay down on the stretcher and felt completely terrified. As the nurse walked up I could tell she was in a bad mood. A really bad mood. She attempted to put an IV in my right arm and I flipped out. I did not want a needle in my arm, I had never had a needle in my arm, and this nurse was so grumpy so she was obviously going to hurt me. I remember her looking past me to my mom and asking her if I was going to cooperate or if we were just going to leave. Why is she a pediatric ER nurse if she doesn’t like kids?! 2 year olds don’t like needles either. What was the difference!? SO annoying! So she eventually got an IV in and the next step was an emergency CT. They rushed me in because nobody was sure what exactly was going on inside me, but something was for sure. After the results were in I remember a doctor walking into my ER room and shutting the curtain behind him. He introduced himself as Dr. Delgado. As he was talking, I all of a sudden heard the word “surgery.” That was all I got out of his whole conversation because I was in so much pain. Once I heard the word surgery I was freaking out on the inside. I did not want to show anyone that I was scared because I wanted to be strong, but a single tear fell down the side of my left cheek after he said that word. I did not want surgery. I had never even been in a hospital and now I needed surgery!? It was too much for me to handle. So he told my mom and I (mostly my mom) that he wasn’t exactly sure what it was. He thought there were three possibilities. One, it was my appendix, two, it was inflamed lymph nodes within my intestines, or three, it had something to do with all of the lady stuff like ovaries and what not. All he knew is that it was something and it had to be fixed right away. He explained to my mom that the surgery would be no longer than an hour and a half. He seemed confident with that and my mom was okay with that as well. So there I was getting wheeled into an OR (Operating room) and there my mom was all by herself sitting in the waiting room. Little did anybody know that four hours later Dr. Delgado would walk out of the OR completely drained and pale in the face towards my mom to let her know what happened. Honestly, this does not happen to anybody. He is a general surgeon. He does this all the time. He has never felt so shocked. I wish I could have seen his face the way my mom did. She told me he was drained and exhausted and looked puzzled. I was still waking up. I had no idea what was going on or what he just went through with me. I feel bad for Dr. Delgado.

XOXO, Cait ❤

All About Crohn’s Disease.

Quality of life declines.

What does it really mean to have Crohn’s? What is the daily struggle really like? Is it as hard as people make it sound? Everybody’s day is different because everybody’s body is different, but yes, it is really as hard as people tell you it is. So it goes like this…at least for me. I wake up with swollen knees right off the bat because I was given the beautiful arthritis that comes along with this disease. As the day moves forward, I start to get hungry. Hunger is normal, deciding what to eat is normal, except normal people do not have to sit for five whole minutes to figure out what exactly to eat. I have to wonder if it will be a bad decision for me later. See, Crohnies have to think hard about this, because if we choose wrong, we may have to spend the rest of the day in the bathroom. My specific trigger that I have to watch out for is fiber. Not everybody understands what fiber is so let me explain. Fiber is healthy. Fiber keeps you regular. They even make fiber supplements because a lot of people don’t reach their daily fiber intake, but for me, a fiber supplement would be bad. Fiber is in everything healthy. It is in fruits, vegetables, whole grain, nuts, seeds, everything that normal people are supposed to eat. What can I eat then? Basically everything else. The bad stuff. I can easily digest fried foods, greasy, acidic, dairy foods, meats and protein, sugary goodness…all of that is fine. So you’re probably thinking that I can still eat a lot, but really, it is all junk. When I go to restaurants I crave salads because I like to be healthy and eat clean, but oh wait, I can’t because I will be in the bathroom all night. I get invited to the movies with my friends. “Do you want to share popcorn with me?” “I can’t eat that, but thank you.” It’s a lot harder than it seems. Try eating like me for a day and you will probably struggle. Also, going on a diet is really hard! Eventually all of this bad food adds up and I want to lose a few pounds, but eating healthy and then leaving for work or school isn’t such a good idea anymore. I’m stuck between a rock and a hard place. It stinks. So some days I cave…I may eat a kale salad or spinach salad or whatever. Due to my digestive system not working correctly, you know what is staring back at me later? Pieces of salad greens floating to say goodbye before I flush. How gross. That really means that even though I am eating healthy, I still don’t absorb all of the nutrients in the salad because half of it leaves me the same way it came in. That is not normal! Another thing is that people do not understand how fast this stuff flies through us. I can eat one thing and within 10 minutes I can be in the bathroom. If you are ever in the car with one who has IBD and they say they need to go to the bathroom, you do not wait until the next clean rest stop, you pull that car over to the next exit into that creepy gas station with no cars in the parking lot because that is how badly they need to go! Lock your doors and roll up your windows if you have to, but let them out. The alternative may be bad. Very bad. Basically, we can not wait and we have no warning. It is here and it is here now! Sorry ’bout it! (Not really) Another thing that happens is bloating. Okay, so not like period bloating ladies, like “Holy crap I look pregnant” bloating. It is painful and embarrassing. Why does this stuff have to happen!? Honestly, my stomach was so bloated that I swear if you took a pin to it, it would have popped! I’ll stick a picture in below! It was awful, I promise. Next, exhaustion. NOBODY UNDERSTANDS THIS!!! I can easily sleep the recommend eight to ten hours and wake up tired. I will get out of bed, start my day, but two hours after I wake up I am already ready for a nap. It makes no sense, right? But it actually does. Due to Crohn’s being an autoimmune disease, my body is constantly fighting. It is always trying to fight off Crohn’s because Crohn’s is always trying to attack my GI system. It is continuous battle between the two and it makes me exhausted. Seriously. I promise that I don’t say it for attention. It’s a real tired. All I can say is thank god for coffee and caffeine. Although, I have to be careful because guess what coffee can do? Guess. Yup, bathroom time. Another thing that happens is nausea, dizzy spells, and headaches. Some days I will wake up fine, but all of a sudden develop a headache along with dizziness which then leads to nausea. Honestly, it comes out of nowhere and it can ruin my whole day. As I said before, everybody’s body is different. My biggest things are the bathroom and feeling like a 60 year old due to swollen joints. It’s ridiculous, but it is what it is. Make the best out of it, right?
Swollen Belly Swollen Knees

Nope, not pregnant…Crohn’s bloat. Nope, not 60 either, Crohn’s arthritis!!!

Not fair!

XOXO, Cait ❤