Crohn's Confidential: My Crohn’s Disease Journey

Welcome to the first official post in Crohn's Confidential!

Let's first start with what Crohn's Disease is- Crohn's Disease is a chronic inflammation of the digestive tract. It is part of the Irritable Bowel Diseases and it can affect different parts of the digestive tract in different people. The most prevalent spots are the ileum (small intestine) and the colon. The symptoms can gradually appear or suddenly appear with no warning. Some of the symptoms include abdominal pain and cramping, fever, loss of appetite, fatigue and diarrhea. There are other not common symptoms that can help your doctor diagnosis, Crohn's Disease in you.  To learn more about the symptoms and treatment, please visit the Mayo Clinic.

My Crohn's Disease journey has been a long one. I was a pretty healthy kid growing up. I had some allergies but nothing crazy health wise. In the summer of 2006, before going to college, I had these weird painful bumps on my legs that my doctor had no idea what they were. He said they were from shaving with an old razor. They eventually went away but we never got an answer. During my sophomore year, I ended up with another weird medical issue- I had a large abscess in my mouth that made my face swell and I could barely talk. When that went away and I was diagnosed with Epstein Barr. I recovered from Epstein Barr in a couple of months. Aside from those odd, one off medical issue, I didn't have any health issues until 2011

2011

I was graduating college & I was finishing up my internship; I was to start my job later that year. In the spring of 2011, I started to really notice some stomach problems; they came on slowly and I just always wrote them off as that I ate something that didn't agree with me. I have been lactose intolerant my whole life, but with the help of Lactaid, I was able to eat dairy normally without problem. I had a few instances where when I took the Lactaid pill, it did nothing. I was becoming increasingly exhausted all the time coupled with the fact that food was not agreeing with me, even plain toast; something was wrong. For graduation, my parents and I went to Disney World and I was sick for the whole time. I think I saw every bathroom in Disney World; I wasn't happy. After we came home, I started to keep a food journal to see if there was a connection of what was making me sick. We started to calling doctors to get an appointment and multiple doctors didn't have appointments until August, it was June at this point and I was getting increasingly fatigued and I was almost to a point where I wasn't eating because nothing agreed with me. 

My parents and I made the decision on our own, for me to eat a gluten free diet. ((Please consult a doctor before making a drastic change in your diet like this. I was desperate at this point to feel better and I couldn't get a doctor's appointment for months, so we took matters into our own hands)) Within a month, my stomach problems seemed to improve. I had more energy and I was able to keep food in more and I wasn't running to the bathroom every five minutes. I felt great, I was able to eat a more balanced diet and I didn't really miss bread all that much anymore. Feeling physically great was the most important thing for me. I felt like I had been suffering for months. This seemed like it was the fix all. This lasted until 2014.

2014

I was pretty happy, I was leading a pretty normal life on a gluten free diet; I had to take some extra time to see if a restaurant had options for me to eat but I had my life back, for a couple of years. I decided to get a part-time job in the summer. I was hired as a hostess at an outdoor bar on the water. I was working my full time job during the week and this job on the weekend. It sounded perfect. (Spoiler alert: it was a mess). My very first day on the job, I fainted within an hour of being there. I blame the sun and the fact I was wearing pants but that was just the start of the summer of mess, as i like to call it. Working outside on the water, can be a little cooler than being inland which I was totally used to. I lived by the water my whole life. I was always cold, it didn't matter if it was 95 degrees out with the sun out and 100% humidity, it was unbearable some days.  Working nights got even worse. I would go to the bathroom to wash my hands in hot water to try to warm up. I wore a Northface all summer. My parents started to notice that I was always pale ALL. THE. TIME. I would say, 'oh I don't have makeup on today, etc.' I worked outside so I should not have been so pale and coupled with the fact I fainted so many times working at the bar, something was wrong. 

Before one of my shifts at the outdoor bar 

with my name tag & North Face

After fainting for the third time, we got an appointment with a doctor, we explained my symptoms and she took one look at me and suggested I go for a blood test. That blood test revealed that I was extremely anemic. That would explain why I was pale, always cold and fainting multiple times. She said I needed more Iron in my diet. She gave me the choice of getting a blood transfusion or taking iron pills and eating foods rich in iron. I chose the latter, I ate so much spinach, beef and anything else that had a high level of iron in it. Within a month, I was able to bring my iron levels back to a normal and I was okay. 

In August of 2014, I decided to eat oatmeal one morning before work. It was gluten free and healthy, I thought it was going to be a good idea. Well, a few hours later, I was in the bathroom at work throwing up violently. After an hour of throwing up on and off, I tried to go home, I was so weak from throwing up, I called my parents from my car and told them what happened. I was still throwing up, waiting for my parents to come and the wait felt like years. Once I got home, I was still throwing up and I continued for a week. I hadn't been this sick in so long; I went to a gastroenterologist and after hearing about my symptoms and what had been happening, he suggested I go for a CT Scan. This would be my first time I had a diagnostic test like this. 

For the CT Scan, I had to drink Barium; its like a thick chalky milkshake. Not only did I have to drink one bottle of Barium but I had to drink TWO of them. They were cold, which as the techs said it made it taste better but it made me cold. I reluctantly drank both bottles, wrapped in warming blankets (aka thin sheets that were put in a microwave) and then the test could proceed. It was weird and scary. I had brought a little stuffed flamingo named Penelope with me for it not to be so scary. I was 25 at the time and I was scared out of my mind. I never had to do anything like this before. I'm glad my parents and Penelope were there for me.  After the test, my parents and I went home and I slept awaiting the test results. A few days later at five PM on a Friday, the doctor called and said I had a mild case of Crohn's Disease and that's it. He didn't offer any assistance or help; nor did he let me know what it exactly was. I never had heard of that before and my parents and I were so confused. 

The week after this surprise diagnosis, we tried to call the doctor for more information but he wouldn't return our calls.  I was feeling better at this point and I was confused why the doctor was so abrupt with his call and then not calling us back to give us more information. We had to do research online about Crohn's Disease and it was not good; a lot of the information I found was about severe cases and nothing matched the symptoms I was having. I was so defeated and upset over this. 

Since this was such an isolated situation, we decided to get another opinion from another gastroenterologist. This one said I didn't have Crohn's Disease based on what he saw and from my short list of symptoms. Great now I am even more confused I thought to myself We decided to seek the opinion of a third gastroenterologist; He agreed with the first doctor and said that I did have Crohn's Disease but it was a mild case that did not require medicine or surgery. Okay, two out of 3 doctors agreed, I had Crohn's Disease but I had no idea what to do. 

I went on living life normally after the diagnosis. I accepted it but didn't truly understand it. Life went back to normal for first time in a while. I was also eating more- after an allergy panel revealed that I did not have a gluten intolerance/Celiac Disease (but it showed I am allergic to seafood, shell fish and all types of nuts. Finding out I was allergic to seafood and shell fish was a surprise to me.) I was enjoying bread again. (#allthecarbs) It was Fall by this point and I was trying to cram all the fall fun activities in before they were over. I was making up for lost time.

November came and I started to not feel great. I was getting tired easily and something felt off, but I didn't know what it was. I went to bed on a Friday with some random stomach pains, I didn't think too much of it since I was supposed to be getting my period soon. I woke up Saturday morning with the same pains and I was exhausted. I spent the in bed and I started to feel better that night; I even made a to do list of things to do the next day. I went to bed later than normal, but I awoke around 5 AM with really intense pains that weren't going away. I tried to go back to sleep, go to the bathroom, walk around- nothing was helping at all. It got to a point where I couldn't sit, lay down or stand without terrible, terrible pains. Something was seriously wrong, and I had no idea what it was. My mom had gotten up at this point and the first words I said to her were, 'I think I need to go to the hospital. This is something that would NEVER come out of my mouth. My mom knew it was serious. I grabbed a bag and packed a few things- Penelope, a book, my wallet, a hair brush and my advance directive/POA. I was so scared on the way to the hospital.  We were at the hospital within a half-hour of my mom finding me in pain. Luckily, the emergency room was empty (it was a Sunday morning) and they saw me right away. The attending came in quickly and he proceeded to press on my stomach to see where the pain was coming from. He got to the place where the pain was really bad and pressed on it then let go. I screamed. He asked a question about the pain and I remember looking at him thinking, it really hurts- FIX IT! in my mind. He deducted that it was appendicitis. Lucky me.

They gave me some pain medication to help with the pain and we had to wait for a surgeon to come in. I believe my surgery was 6ish and they said it would be about a half hour surgery and I remember thinking, perfect I will be out in time to watch Bob's Burgers which was at 8 PM. Well lets just say, the surgery lasted longer than was intended and they found not only did I have appendicitis but it was so bad my appendix had burst and it was gangrenous too. I really hit the jackpot with this, I thought to myself. I was in surgery for an hour and half. I finally made it up to my room around 9pm and all I kept thinking, I am so hot, I needed to get those silly socks off my feet. I kicked my socks off and kicked the sheet off to expose my feet. I took a look at my feet and asked my mom, why are my feet bruised ?  I was still loopy from the anesthesia and I didn't realize it was the gangrene. This was serious and scary.

I spent 3 days in the hospital recovery and when they discharged me, I didn't feel any better. I felt like crap. I went home and suffered for a week and a half, I was readmitted and had another 3 day stay because of so much pain and a fever which was indicative of an infection. It was very scary and I was so nervous- what the heck was going on with my body. During the second time being admitted, I remember being in so much pain one night, I was crying my eyes out praying for the pain to stop when I started reciting nursery rhymes; yes, you read that right, nursery rhymes, itsy bitsy spider, abc's, anything to get my mind off the pain. It was the worst I had felt up to that point. 

I spent about a month a home, recovering from this surgery. I was so ready to go back to work mentally but physically I was still a mess. I begged the surgeon to give me the okay to go back to work. I hadn't been eating because nothing was staying in me, I had lost a considerable about of weight and I looked so frail. When the surgeon gave me the okay to go back, I was so happy, thinking about getting back to normal after a crazy month. Trying to find clothes to fit was a problem because I was so thin and to make matters even worse, the incision from the surgery the month before, hadn't closed yet. Every time I brought that up to the surgeon, he didn't think anything was wrong.  I was so weak, my mom had to help me into work, carrying my purse and get me settled at my desk. Everyone always looked at me with such sadness; they knew I was still so sick but I was there. Something was wrong and it seemed like it was getting worse again.

2015

The beginning of 2015 was rough for me, I was still really sick and really miserable. My incision from my NOVEMBER surgery didn't heal until MARCH. Yes, you read that right, 4 months later. The surgeon did not think anything was wrong that it wasn't healing correctly. I was very upset at that fact. I was back to a limited diet, trying not to get sick daily and getting through work. I gained some weight back, but it was still a struggle. I was miserable all the time and I prayed things would get better each day. When I would be working, I would say to myself 'just get through the next 10 minutes. When I got through those 10 minutes, I would say just get through the next 10 minutes' I would repeat that to myself every day until it was time to leave. I yearned to get back to normal, so badly. I just didn't seem that was ever coming at this point.

In the beginning of June, I started to notice these odd, painful bruises on my legs, I have no idea how they got there. I knew I was clumsy, but this was unusual. They didn't bother me that much to look at them, but they sure did hurt. I did some research and I couldn't find anything on this. During this time, I started taking Yoga locally. We figured this might be beneficial and not too straining on me.  I was really enjoying practicing yoga.

My health had improved a little bit but I started to feel sick again towards the end of June/ beginning of July. The same things were happening again- I was feeling so fatigued and food wasn't agreeing with me. I stayed home a few days with a fever. I went to the GP I had been seeing since the beginning of the year and told her all my symptoms. She had no idea about the bruises on my legs but she noted that my heart rate was elevated; she was a little worried so she sent me for a bunch of blood tests where they drew about 17 vials of blood, testing me for everything under the sun. She had requested that be rushed and I went home to sleep after going to the lab. I awoke to a phone call from my GP saying I should go to the hospital right now. Cue the waterworks. I was so upset, there seemed to be such an urgency in her voice. Just like back in November, I packed a quick bag for the hospital- Penelope, my wallet, my documents and then we were off. We live 40 minutes away from the hospital and it was a Friday in July, in New Jersey.  AH! We got to the hospital in record time. After getting checked in, they ran the same battery of blood tests- taking another 17 vials of blood. After many many hours in the emergency room, I was admitted. The only room available at the time was on the end stage oncology floor. This was the beginning of a 13 day hospital stay. This was not the vacation I was looking forward to. 

How I felt about staying for almost 2 weeks in a hosptial

 During this hospital stay, I saw so many different doctors who had, in my opinion, no idea what was happening with me. I kept showing all of them the bruises on my legs and they were just as puzzled as I was. Great! I thought. There were a lot of different tests that they put me through each day; I drank so many different types of liquids to improve the visibility of my intestines. It was a lot of take in, I was NPO which meant I was not to eat or drink anything (except the prep) by mouth. It was hard the first few days but after a while it felt normal and I didn't really miss it. What was even more frustrating was the number of doctors, nurses and techs were in and out of my room all day, every day. I know they all had jobs to do but I wanted to be alone at some point. There were some doctors I truly liked, I truly hated. One of the doctors I showed the bruises on my legs to, said give me a minute, left the room and came back and said something that sounded like it was out of Harry Potter. He actually knew what it was; he proceeded to explain what it was and why it happened. I was so excited to have a name of this weird condition- it was called Erythema Nodosum and it was a rare side effect of Crohn's Disease. This particular doctor said he never saw this in person, that's how rare it is. I'm a real winner with these odd symptoms Well, one mystery figured out, another one to figure out. 

After all the tests results came back, it was confirmed, for real that I do indeed have Crohn's Disease. The one doctor, I really liked, sat down with my parents and I and said we probably should get a second opinion, at a larger hospital, Robert Wood Johnson. Okay- I guess we are going to another hospital. 

My view during my hospital stay

The 2 week hospital stay was hard. There were always people around me, but it was a very lonely time. I was sick and just frustrated with everything going on, I didn't have answers quickly and all i wanted to do was to feel better. I had my parents with me during the day, family members stop by and even some of my coworkers surprised me. When I finally got a definitive answer, I was happy to have answers but they weren't exactly the answers I wanted. 

At the appointment at Robert Wood Johnson, we went to the Crohn's and Colitis Center and gave all the tests results and my history to the doctor. The doctor and the medical student confirmed that I do indeed have Crohn's Disease and I would require to take medicine. This is the exact point when I broke down and started to cry. Especially since he was talking about having to inject myself with the medicine- I did not want to do that. This was a lot to digest. I wasn't expecting to be told medicine was something that I needed- it never entered my mind. I needed time to think about medicine if that was something I wanted to do.

I made another appointment with the doctor I connected with in the hospital. We talked about all my options and what I felt most comfortable doing. I was feeling better after the hospital and more like myself. We decided to hold off as long as I can, without medicine. I wanted to see if I can control Crohn's Disease with my diet and exercise, since I had a mild to moderate case. My life has completely changed because of this diagnosis. 

From September to December, I was healthy as I could be and I was living as normal as I could.  I was truly enjoying life to the fullest. I was relieved and happy. At this point, I was hoping this was the end of the worst. 

2016

I was still feeling good for the beginning of the year. By March, I wasn't feeling the greatest. I had really trying days. My mornings were terrible- I would wake up feeling very sick and not motivated to do anything but sleep. This 'morning sickness' would last some days until noon; some days all day- it really varied, and I couldn't figure out what I was doing to make me feel like this. I would go to work because I always knew at some point this would pass and I always thought, why would I waste a sick day for something that was going to pass. I had also developed this terrible irritation around my eyes. It was red and itchy and to be honest, I looked like a sad panda. I went to multiple dermatologists and eye doctors, no one had any idea what that was. It was another frustrating time for me. I wanted answers and no one seemed to know what was wrong. I was under a lot of stress because these unknown symptoms that kept popping up. I had reached my boiling point one day seeing a dermatologist, that I screamed THAT'S IT! I'M DONE! all the way out of the office. I truly looked like a crazy person, but I felt no one was really listening to me. Finally an eye doctor told me "to find expensive eye cream" and that should help. I still looked like a sad panda for a few months afterwards, but it did eventually go away.

It was already May when I felt like I was getting even worse and nothing was working. I finally saw my doctor after 3 months- I was miserable, sad and confused. I was not having any gastroenterological symptoms but all these other random symptoms that didn't make sense but were all indicative of Crohn's Disease. He thought it was time for me to start medicine. I wasn't happy about this medicine, but something had to change. We decided to start with Remicade which was a biologic medicine. I was not pleased about this especially since I would have to go to the hospital to get this medicine- it was an infusion and the list of side effects were absolutely terrifying.  My doctor prescribed it to me and that started two weeks of fighting with the insurance company to approve this specific medicine for me. They fought back saying I didn't fail other medicines first and that my symptoms weren't serious enough. They finally relented and I was approved after two long weeks.

The happiest sight to see

I was happy to have the infusion at the hospital just in case I had any allergic reactions or something else happened.  I also have notorious hard to find veins so that added to the stress A LOT.  The infusion was to take place in the Outpatient Oncology Infusion room. That is a little intimidating, I understand this is a chemotherapy drug and it needs to be in safe place.  The day came for my infusion and I was very nervous. The infusion room was very small and there was very little privacy. The nurses were above and beyond amazing. They did everything to make me feel as comfortable as they could. I was there for about 5 hours. They had to give me pre-medication to ward off any allergic reactions and then I had to stay there for a little bit after the infusion to make sure I was okay. The medication took about 2 hours to infuse into the IV. During the infusion, I chatted with my parents, I watched the Office on Netflix and I tried to nap as well.

I was so hopeful this was going to help me.  I was so tired of being sick and tired at this point. In the next 8 weeks I had to go back for 3 more doses, two more starter doses and one maintenance dose. Each time I would go to the infusion room, it got slightly easier. They always seemed to have trouble finding my veins and the anxiety was still front and center.  As the medicine doses continued, I was nervous this wasn't going to work; I knew I wanted instant results. The redness around my eyes was still there, I had some random rashes popping up which could be from the medicine; overall I was feeling slightly better and I had gained some weight. Between my doctor, blood test results and how I was really feeling, we weren't sure if this was actually working. This is something I knew going into this- having no real clear results due to my funny onset of the Crohn's Disease and the unusual symptoms it was really a guessing game.

This verse got me through some really hard times

It seemed like every month in the summer, I was heading back to the hospital for another infusion. I got used to it after a while and I actually even started to feel a little better. My doctor was happy with my progress throughout the Fall. It might had taken a little time to work but at this point it seemed to be working well. Late in the Fall, my doctor decided to do a colonoscopy to see if the inflammation was decreased because of the medicine. To everyone's surprise, I did not have any active disease and I was given the one thing I was hoping to hear- you are in remission! WOAH! Remicade actually worked. I couldn't believe it.  I was so happy to hear those words. The doctor decided not to continue with Remicade at that point. There were far too many random side effects that we couldn't tell if it was coming from the Remicade or something else. I was feeling good and in remission. This is something I've dreamed of for a long time.

I spent the rest of November living life as a normally healthy person. In the middle of December started to get a little shaky. I wasn't feeling well and I was sleeping as much as I could. I didn't enjoy the holidays and I started to worry I wasn't in remission anymore. It was hard not to get down on myself- I started to think, did I do this? what did I eat to cause this? My fatigue and irritability came back along with the lack of appetite. I was back to having terrible mornings as well.  I pray 2017 would be better.

2017

January was okay. I was doing my best to keep as busy as I can but still rest and listen to my body.  I was still working, going to therapy, practicing yoga and going to Rotary meetings. At this point i was seeing my doctor every 3 months for a check in, January he sent me for a blood test as I still wasn't feeling great. After the results came back, he put me on antibiotics to help with an infection that popped up. 

I had terrible anxiety and depression during this time, seeing a therapist weekly was really helping but the fear of the unknown with my symptoms and remission seemed to be too much for me to handle most days. I tried to keep a good face for the public but being alone with my thoughts was so hard. You would never have thought I was dealing with such anxiety by just looking at me; my therapist was such a big help (and she still is!) during all of this.

Dealing with all anxiety surrounding this diagnosis, I decided I needed to see someone to talk through all of this. I had one therapist in the beginning that I really didn't click with; her solutions felt so unattainable that I felt like I was set up for failure.  I stopped going to her and found my current therapist by chance. She is help me create a toolbox that was full of tools that I could easily use and would benefit me in my current situation. She didn't diminish how I was feeling, she has helped me understand why i am feeling this way.

I had a colonoscopy in May that showed inflammation again. What a bummer but I knew it. I was feeling like crap and I was starting to fall back into old patterns. We decided I would try Stelara; I was not happy with this at all. I was very much against the self-injectables. This scared me so much but I know I needed to feel better.  My doctor agreed to do it for me. I hated these visits; These were so painful, and I was worried that this wasn't going to work out.  After getting several doses, it seemed to work for a while.

After the 5K

During the summer, I trained to run a 5K at the end of the summer. I hated to admit that Stelara might actually be working; I was feeling the best I was feeling in a long time. I was super active, and I was happy. The Fall kept on giving me good health and I was, again, hopeful with the thought that this medicine actually worked. This again was short lived. By Christmas again, I was not feeling well at all. It got so bad that when I went to NYC to see the Radio City Holiday Spectacular, I was exhausted, pale and not feeling at all my best. We left early in the morning, I slept part of the way into the City, we saw the show and on the way home, I fell asleep again. I took a nap before going to dinner. I slept more that day then I was actually awake. It was truly terrible. That fatigued feeling followed me into 2018.  I was overcome with emotion- why is this happening again? Why me? What did I do this time?

2018

On New Years Day most people are hung over from partying too much; I felt like I was hung over but not from drinking but being sick; I truly was not feeling my best. It was so bad that I took the next day off from work. Not the way I wanted to start the new year.  After a visit with my doctor, we decided another colonoscopy and another blood test was needed. He realized I was iron deficient again. He suggested I see another doctor for iron infusions. That doctor agreed with my doctor that iron infusions were the best protocol. This new doctor had an infusion center in his office; it was convenient and helpful. I ran into the same problem I did with other infusions, the nurses had a hard time finding my veins. When they finally got one, I was relieved. The room was set up like a living room; there were a bunch of oversized recliners against the wall all facing towards the center. There was not much privacy and the other patients were there getting infusions and chemotherpy. I felt out of place, just like I did when I went the infusion center at the hospital. Most times I slept: I was so exhausted. The staff was always going above and beyond what they needed to do.

Sleeping during the iron infusion

After the iron infusions, I started a different therapy for Crohn's disease- Entyvio. I was much happier with the fact this was a quick infusion and not a self-injectable (Stelara) or a longer infusion (Remicade). I would schedule these infusions in the morning and go into work afterwards. I was happy to see that the tiny original infusion center was moved into a new brighter, more welcoming infusion center in the hospital. My favorite part of this infusion center, the heated chairs. The nurses were amazing, and they always went above and beyond for the patients. My fears resurfaced again about them finding my tiny veins; some days it was hard to find a vein. One time, it took them almost an hour, 3 nurses, 8 pokes and one vein finder to find a very tiny and hidden vein. I needed the apple juice they gave me more than ever that day.

At the new infusion center, getting Entyvio

I hate to admit, but I had a favorite chair in the infusion center.  It was all the way at the end and it was the one by itself. It wasn't that I didn't want to be friendly with another patient (there were two chairs angled somewhat towards each other facing out a huge floor to ceiling windows that overlooked the main entrance of the hospital. You could not see in but the patients could see out.) I just liked being alone. Being in the Infusion center always put everything into perspective for me.  Life changes so quickly, you need to cherish every moment- good or bad.

Entyvio and the iron infusions seemed to help me through the winter and spring. I still was keeping up with a full schedule of extracurriculars. I had another iron infusion in July to supplement the ones in January and February. Around this time, I started to get weird stomach pains. These pains would not be present all the time but when they did decide to show up, they came strong and quick. As the summer wore on, they would show up more frequently and become more painful. We, my doctor and I had no idea why this was happening, and I was losing my appetite more easily which in turn made me unintentionally weight loss. I started antibiotics and it seemed to work a little taking the really bad pains away.

In early August, I saw my doctor again and at that point, I had lost some  more weight, I looked sick. He was upset this therapy wasn't working. He suggested maybe a diet change; I was game for anything at this point, I wanted to get off this roller coaster that my health issues had become. The stomach pains didn't improve and at this point, I tried to ignore them and when they did come, I grinned and bared it. Sometimes, the pains stopped me in my tracks- it was that bad. I always described them like contractions- they come on strong, stay for a few seconds and then they disappear.

August 2018 - This was in the midst of one of the bad 

flare days

I was not doing well in August,  I was running to the bathroom all the time, coupled with no appetite and these stomach pains, I started to get worried. I kept these things mostly to myself. I didn't want to worry anyone just in case it ended up being nothing. I was going on vacation the first week in September and I prayed I would be able to make it through.

My vacation came and it was a mixed bag of symptoms. Some days I was fine and I was able to all the fun things that were planned but then at night I would start to feel terrible. The last day was probably my worst day-I was at the pool all day and I was leaving that night. My stomach was in knots, the pains seem to be getting even worse and  I kept running (literally running) to the bathroom that was across the pool area and I felt more  terrible as the day wore on.  All I wanted to do was to get home to my bed and I knew that was not possible right then and there. I had 6+ hours of travel ahead of me. I tried to eat plain pasta before we left for the airport since that's usually my go to meal when i am sick but I couldn't even eat that. I prayed so hard that I wouldn't have any trouble on the red eye back home. Luckily for me I slept the whole way on the plane and then all the way home in the car.

In Vegas, right after eating dinner that did not agree with me 

before sleeping through LOVE: The Beatles Show

I spent the next day in bed trying to recover. I went to work the week after my vacation for two days feeling terrible but on Wednesday I didn't go to work; I was still feeling terrible and now I was starting to throw up. UH OH! I knew that really meant something was wrong. After realizing that, I knew I had to go to the hospital. That is the last place I wanted to be but throwing up with Crohn's Disease is never good.

After what seemed like forever, I was admitted to the hospital for observation with Ileitis aka Crohn's Disease. This seemed like a really big flare and the stomach pains over the summer seemed to be the cause of this flare. We were happy that I was finally having gastroentrological problems because of my Crohn's Disease.  All my other symptoms were never stomach related, they always appeared somewhere else on my body, up to that point. He sat down with my parents and I and said, you might want to seriously think about surgery.

September 2018 overnight hospital stay after getting back from Vegas

Now surgery had come up about a year before all of this and I brushed it off. I was managing my symptoms pretty well and surgery was/is a really big, scary step. All of these emotions were flooding me-feeling worried, scared and sad. He suggested we contact UPenn hospital because he thought I would get better care and they might be better equipped to handle my case.  I spent an overnight in the hospital and I went home with some antibiotics and a lot to think about. The stomach pains ceased after the hospital visit and I was so happy- I had lived with those stomach pains for so long that not having them was a little weird.

Two weeks later, we were on our way to Philadelphia to meet with a doctor that my doctor recommended. I had no idea what to expect from the doctor and UPenn. It was overwhelming and scary. I was really glad my parents were with me. We were prepared to wait for a very long time. my appointment was at Noon, but we waited for almost 3 hours for the doctor. The doctor was totally worth the wait. She was amazing, she listened and she didn't rush us. She agreed that I surgery was a good idea and that I probably should start Humira, another treatment for Crohn's Disease. I was hesitant about this but because this was a self-injected treatment. I remember the terrible time I had Sterlara BUT I was really sick at this point; the Entyvio clearly wasn't working- I would not be having such terrible stomach pains if the medicine was working.

September 2018 After my first appointment at UPenn

I felt hope after this first meeting with the UPenn doctor. This was something that I hadn't felt in a long time. I was thankful for her and curious to see if Humira was going to work. My parents and I met with my doctor two weeks after going to UPenn. He was happy she agree with his diagnosis and that I would be starting Humira. He was just equally as upset that Entyvio wasn't working as we were. At this point I wasn't feeling 100% just yet but I was doing better than I was 6 weeks earlier.

Taking Humira by myself for the first time was very intimidating. I had to take to the 1st loading dose that was two injections, one in each leg. I felt a little more confident doing this because this was a pen not a syringe. It was fool proof but still nerve wracking. I did it and I think I cried afterwards- not because it hurt (which it didn't) but because I was sad it had gotten to this point.  I had previously 'failed' three other medicines up to this point and all I wanted was to live a normal healthy life and that seemed like the hardest thing for me to achieve.

October 2018 First loading dose of Humira 

The second loading dose went easy and I just kept praying this was working. I was back to having this terrible morning sickness and just trying to get through the day. After taking Humira for a month, I saw my doctor again for a checkup.  I let him know how truly terrible I was feeling and what I have been doing. He sent me for another blood test (#3405ish at this point) and for another iron infusion. I hated how this year I was receiving so many iron infusions, but I knew my body needed the extra help; I felt like my body was giving up.

Right after Christmas I ended up back in the hospital with Ileitis again. I was so frustrated and upset that Humira didn't seem to be working. I was angry at my body and I yearned to feel better. I wanted to be healthy again. I was sent home after 4 days with antibiotics and lots of prayers. I knew now that surgery would more than likely be in the very near future whether I like it or not.

2019

A week after my latest hospital stay I saw my doctor again for a follow up visit. We discussed surgery and how I was feeling. I was feeling okay at this point, nervous but I knew this would be a good choice in the end. Towards the end of February, I was not feeling well again. I stayed home from work and when I saw my doctor again, he agreed another colonoscopy was needed.  We needed her approval to see a surgeon at UPenn. The colonoscopy was just another routine one; at this point I had 6 colonoscopies since 2014. This was nothing new for me. This would help the doctor in Philadelphia. 

I had another appoint at UPenn with the same doctor I saw in September. When we went to UPenn the next week, I was pretty nervous. I didn't know what she was going to say or if she was going to agree if this is the right time for surgery. It was another long day of hurry up and wait. I was even offered a snack waiting for the doctor. After talking with the doctor and her looking at the colonoscopy results, she agreed surgery would be the best plan of action. We made an appointment to see the head of surgery in three weeks.

March 2019 Snacks while waiting on the doctor 

During the three weeks, I wasn't feeling great but I wasn't feeling terrible- I was just surviving. That is what I did a lot of the previous years- I tried to just survive. I was trying to live as normal as I could yet in the back of my mind, it was looming that I was having surgery sometime in the very near future. I knew this would be for the better but my anxiety got the best of me every time I started to think about it.

The day came for us to go see the surgeon. I was to have a diagnostic test at 8AM then to see the surgeon at 10AM. The test was done in the hospital at UPenn and the test was a small bowel series. Over the years, I had this test multiple times. Its not a terrible test but its not one of my favorites. I had to drink barium for this test; the bottles of Barium seem so large and it's always so cold.  It's like a chalky milkshake that was never ending. One the test was completed, the results were read and sent over to the surgeon who we were on our way to see next.

April 2019 drinking Barium for the diagnostic test

We went across the street to the doctor's offices where we were to meet the surgeon. This was another hurry up and wait situation, which we were expecting. We moved from one waiting room to another waiting room until it was time to see the surgeon. I was nervous she was going to rush through this appointment and not listen to a word I was saying. I was worried that my concerns would not be heard, and my symptoms would be dismissed. Worst of all, I worried that she did not think it was necessary for me to have this surgery.

She put all my fears and worries to rest. She listened to me patiently when I spoke about my symptoms; she listened to my mom about her concerns about me and not ignoring her (like some doctors have done in the past) and she put me at ease that yes this would be beneficial for me. She explained the surgery, the recovery and what to expect. She wanted to schedule the surgery as soon as possible; looking at her schedule, she asked how is May 2nd? May 2nd in less than a month? I said yes!

I left the appointment feeling hopeful that in just under a month, hopefully my life would be totally different. I wanted to live a normal healthy (as I can be) life.  On the ride home, I started to think of everything I needed to get together for my hospital stay. I never really packed for an extended hospital stay and with all the things swirling around in my head, I fell asleep from exhaustion of worry and nervousness from the day.

The next few weeks were a blur; I was getting things ready for my hospital stay, I was making sure loose ends were tied up at work and everything was labeled and instructions were left for my boss to take over my job for a month. I was excited and nervous about what is to come.

May finally arrived and I couldn't believe it. We went out to Philadelphia the day before my surgery because I had to prep for the surgery and we thought it would be easier to be in Philadelphia for that and for the morning of my surgery. The prep for the surgery was exactly what I expected for the surgery and I went to be that night praying things went well the next day.

After waking up early the next day, I gathered my things and we were off to the hospital.  We checked it and then played the waiting game again.

May 2, 2019

Pre surgery family selfie

The surgery was a success and I was happy to be on my way to recovery.

[[Next week I will post all about surgery- my thoughts, concerns and everything surrounding it]]

Post Op Day 1 family selfie

May was a roller coaster for recovery- some days were good but some days were bad but overall, I was happy. I couldn't wait to get back to work again. I was slowly starting to do things on my own and I felt good as the month wore on. Once I went back to work, life seemed to be back to normal for a few weeks.

Six weeks after my surgery, I was having odd stomach pains again and not feeling great. Something was off and after speaking with my doctor here, he suggested I take a trip to the Emergency Room. After work on a Thursday, I headed to the Emergency Room and after a few hours giving the diagnosis of Ileitis again. I was angry at the diagnosis; this shouldn't be happening- I just had surgery to correct this. I started my Humira again for the first time since and that should of helped but it didn't. I was sent home with antibiotics and I prayed that was the last time I would be in the emergency room for a while.

Emergency Room Hallway

June 2019

Slowly as the summer wore on, I started to feel better and better. Once August came, I felt exponentially better. It felt like a 180 with my health. All the stress that I was experiencing, and all the worries seemed to disappear overnight. I was cautious to fully accept this amazing feeling. I know my body and it likes to play tricks on me.  My doctor was elated when I saw him in August and told him I was feeling better. We, my doctor, my family and I, all hoped this feeling would stay forever.

Judging from my blood test results, it looked as if Humira was actually working. This was the first time we had ever seen positive results with a medicine. In December, I saw my doctor again and he was shocked as much as I was that I was still feeling good. This was the first December in a long time that I wasn't sick; it was a miracle.

2020

That healthy feeling and having little to no symptoms has stayed for 9 months. I am over the moon that I can live my life with as much normalcy as I can. I still am taking Humira every other week and watching what I am eating. Exercise has been helping me keep my stress level down- I had realized in the past that stress was a big aggravator with my symptoms. I am still seeing my therapist to help me through things and process all the crazy things that pop up. I am hopeful for the future and what is to come with my health. I have a great team of doctors that understand me and listen to my concerns, so I know I am well prepared if anything should happen again.

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Writing my complete Crohn's Disease journey out has been therapeutic for me. I have snippets written down in different notebooks from over the years but putting everything in one place in order and without censor, it feels really good. Thank you for taking the time to read this, I truly poured my heart and soul into this post. 

[[Be kind, for everyone you meet is fighting a hard battle]]

-gabrielle