My name is Natalie and I was diagnosed with Crohn's in March 2004. This is my story.
It was the beginning of my junior year of high school (October 2003) and I had no idea I would be in for the fight of my life that year at 16 years old. I was in and out of the hospital for weeks at a time my whole junior year because no one was quite sure what was wrong with me. I was losing weight, losing some of my hair, tired all the time, no energy to do simple things like walk from one room to another and at times walking with a cane because I had developed a pain in my upper right leg and lower back. Not to mention, I had been missing a lot of school and losing contact with friends. This went on for far too long and I couldn't remember what normal felt like anymore. More time had passed and I noticed a lump had formed on the lower right side of my stomach. After several tests, they found out that my appendix had swelled up to the size of a tennis ball (this was the lump I was feeling)! Unfortunately, my appendix ruptured before they could remove it. This can be deadly, but luckily my body protected itself by forming puss pockets which encapsled the toxins from my ruptured appendix. The Doctors had to first carefully drain the puss pockets that had formed around my intestines before they could do the appendectomy. I can still vividly remember this procedure to this day because I was awake during the whole thing. It was done as a CT guided drainage. I remember feeling so much pressure and squeezing the nurses hand that was in the room with me. The doctor ended up removing four large syringes of puss and showed me one of them after. After that was removed, I was cleared to have the appendectomy done. I was sent home a couple days later. The doctors had thought that must have been what was giving me trouble the whole time and now I should get better! That wasn't the case though because in the coming days after I had went home, I still wasn't feeling good. Not long after that I was back in the hospital. This was really starting to wear on me mentally - All these trips in and out of the hospital and all the tests they were putting me through an so many days NPO. I was starting to feel like I was losing myself. I had forgot what it felt like to be a normal teenager. This time around in the hospital they found a perforation in my Ilieum. I find out later that the fluid that leaked out from the perforation is what caused the appendicitis. At somepoint during all of this, I had become septic as well. Since I was so young, the doctors didn't want to go the surgery route first. They wanted to try resting my bowel to see if my body would heal itself to prevent the surgery. I had to get a PICC line inserted in my arm so that I could still get nutrition (TPN) into my system since I wasn't allowed to eat any solid foods. All I could have were these nutrition drinks and my 17 pills a day I was taking (antibiotics and oral Crohn's medication). It's not an easy thing to go a month without being able to eat real food. After that month of resting the bowel, I went for more testing and the results showed it didn't work. I was devastated. That definitely was not an easy thing to go through and now I was told the perforated part of my Ilieum would need to be removed. 17 years old (Senior year 2005) and going under for major surgery. It was one of the scariest moments of my life. Throughtout all of this, I kept up on all of my homework when I was missing high school and because of that I was still able to walk with my graduating class (about a month after my surgery) and even graduated with honors.
The Doctors told me that I have Crohn's. What is Crohn's I thought? I had never heard of it before and no one in my family has it either. I started doing a lot of research on it and had quite a few people tell me they didn't think that I had Crohn's because I didn't display any of the classic symptoms. I had started to believe that I really didn't have it either, so I quit taking my medication because it didn't make me feel good at all. The next few years I felt really good physically, but mentally I was in rough shape. Keep in mind, not long after I had my surgery, I was graduating from high school. That meant all my friends were going off to college and I didn't. My parents thought it would be best if I take a year off because I had just been through so much. Looking back, I'm not sure if that was the best decision because I had started to develop anxiety, bouts of depression and loss of myself as the person I was before going through all of this. I had lost contact with most of my friends since this was such a pivotal time in my life when this happened. I knew I was the only one that could change my situation. I started reaching out to all of my old friends and doing things again - living a normal life to me. I started to feel like I was finding myself again. It was a wonderful feeling. Music became a very important part of my life during all of this too. It got me through some of the really hard times.
Fast forward to December of 2012. I was starting to have a lot of diahrrea and it got to the point where it wasn't letting up. I thought to myself, I better go see a doctor. I was told I needed a colonoscopy. I had it done and it showed that I have some inflammation going on. I was then referred to a GI doctor. The GI doctor put me on some steroids to help with the inflammation.
Fast forward to January 2015. I had been off of my maintenance medication for a while now and unbeknownst to me my intestines had become extremely inflamed. I had felt a lump again on my side so I made an appointment to see my PCP. I was sent to get a CT scan done and before we left, I was told my doctor wanted to speak with me. "I'm sorry Natalie, but it's back". I can still hear those words so clearly to this day. I burst out in tears. At this very moment, I realized that I really did have Crohn's. That denial I was living in quickly vanished. I was devastated to find out that an abcess had formed on part of my intestine. I was direct admitted. The Doctors drained the abcess and put me on a bowel rest for a month again. That meant only clear liquids orally and IV TPN. A PICC line had to be inserted into my arm again to deliver the TPN (total parental nutrition) into my main artery. The bowel rest seemed to help this time. So I was put on a Crohn's maintenance medication to keep things under control. This is the year that I came across the Crohn's and Colitis walk as well. I had wanted to start getting involved and raising funds to find a cure. I did a quick Google search and came across CCF of Michigan! I walked this year and made a promise to myself that I would participate every year and start raising funds. I knew I had to do my part to help others that are going through the same thing. It really is amazing what talking to other people going through the same thing can do for you.
Fast forward to December of 2016. I ended up in the hospital with a severe Crohn's flare. It was causing a lot of pain. I could barely even eat. I was sent for more testing again. They found a little bit of fluid that they said was a start of an abcess. I was in the hospital for 11 days and then came home with IV antibiotics. They had to put a PICC line in again so that I could administer the medications at home. My doctor thought the medication I was on for Crohn's wasn't working anymore and that's why I had that flare. I was then in and out of the hospital four more times before they decided to do surgery in March of 2017. This time was harder. I struggled mentally because I had been through all of this before. Some of the anxiety had come back from everything that I went through too. This time though I had added stress - not having any income come in since I was missing work, my bills stacking up and a new house we had just bought. After surgery, the surgeon told me that it was worse than he thought. When he got in there he said my small intestine had a perforation and my body tried to protect itself by part of my large intestine attaching itself to the area of the small intestine that was affected. In doing that, it ruined that part of my large intestine. So part of my small intestine and large intestine had to be removed this time. This was a major reality check and I knew I needed to get on a stronger Crohn's medication now since this was my second resection. I knew it was time to go on biologics again. I would like to give special recognition to my surgeon, Dr. Hawasli, who did my surgery back in 2005 and the one in 2017. When no one else seemed to know what was going on, he saved my life both of these times. He is truly a wonderful surgeon and I am so grateful for him.
These days, I am feeling great. I have gained a lot of perspective through everything that I have been through and am so grateful for every good day I have. One of my biggest take aways - Never give up - You can do anything you set your mind to.
As you can see, this is why I continue to fight for the cause and to fight for a cure. Please help me reach my goal! Any little bit helps.
This year, I will be walking in the Take Steps for Crohn's & Colitis Foundation of America (CCFA). Take Steps is CCFA's national walk the nation's largest event dedicated to finding cures for digestive diseases. It is a casual 2-3 mile stroll to raise money for crucial research, bringing us closer to a future free from Crohn's disease and ulcerative colitis. Over 1.6 million American adults and children are affected by these digestive diseases. While many suffer in silence, Take Steps brings this community together in a fun, energetic and supportive atmosphere.
Your donation will help support local patient programs, as well as important research projects. This cause is very important to me and I appreciate your help as we fight for cures! In addition to donating, you can join me at the event. There will be food, music and family activities. The more money we raise, the closer we will be to making life more manageable for patients who live with these diseases every day.
Please join me or donate to my efforts to support CCFA in finding cures!