In honor of Crohn’s awareness week, I thought it would be “fun” to tell how my journey with this little disease all began! Because this week is all about awareness, I have decided to share some of the yucky details of being diagnosed to let y’all know the signs and symptoms. So here is your fair warning…if you get grossed out easily, I would suggests skipping over this post ;)
On January 1, 2005 (19 days before my 13th birthday) I woke up to a bad stomach ache. Since it was the holidays, I figured it was something I had eaten in the past few days that was making me feel bad. Later that afternoon, I realized this “stomach bug” was going to be a rough one. The pain increased and soon the bloody diarrhea began. Being the active 12 year old that I was, I choose not to tell my parents because I knew they would not let me play in my basketball tournament that weekend if I was sick. Over the next week the pain grew increasingly more intense and the blood and diarrhea got worse and worse. My parents quickly picked up on the fact that something was not right. My mom got me into my pediatrician the very day that she realized I was very sick and getting worse. So that afternoon the pediatrician spent a long time examining my stomach, running blood tests, stool tests, and having me use every descriptive word I could think of to describe my pain. I don’t know about you, but every time I have to describe to a doctor the kind of pain I am experiencing, I get frustrated super quickly and annoyed by all the little questions that they can ask you in regards to one comment, “My stomach hurts.” Nine years later, I now have it down to a quick 5 second description of the kind of pain I am experiencing…practice makes perfect ;) After being with the doctor for well over an hour, she told me that my signs and symptoms were not good and that I would need to go see a pediatric gastroenterologist. I left a little frustrated because I wanted some medicine to make this terrible stomach bug go away and my doctor had not given me any. That afternoon my mom called the pediatric GI group at Cook’s Children’s and they informed her that they could see me in a month. The Lord gave my mom great discernment during that moment and urged her to find somewhere else that could get me in more quickly. We got into Dr. Michael Russo at Children’s Hospital in Dallas the following day. I remember feeling excited to see him because I thought he would give me the medicine that I needed to make these progressively worsening symptoms go away. They had actually gotten so bad that I had lost 15 pounds since January 1st and I was starting to miss school because of the amount of times I was having to go to the bathroom during the day. If you have ever had a stomach bug that left you wondering if you could even make it to the bathroom, imagine that times about 10 times more aggressive and you have the lovely “need to go” feeling that Crohn’s brings.
January 13th, 2005 is a day that I will never forget. It was the day that the word privacy left my vocabulary. And the tests that they have to perform in those GI rooms, let’s just say I don’t wish those even on my worst enemy. Ugh, they are not something that you get used to. God’s presence was so evident in that hospital room that day as he provided my mom and I a lot of piece amidst a storm. Dr. Russo told us that I would be having a colonoscopy and endoscopy the following week and gave me the prescription for my clean out the day before. As he sat there and explained to me that I would be put to sleep and have a tube inserted down my throat and up my bottom, I remember my head began to spin and I thought this was all a mean joke. A very very very mean joke. I did remember, though, to ask if they would be using different tubes in my mouth and bottom ;) don’t worry, they do!!! J
My 13th birthday came and it was the most wonderful birthday I have had! My parents did “While You Were Out” to my room while I was at school. They painted, got me a new bed, desk, bedding, lamps, curtains, the whole 9 yards! It was wonderful! I was so surprised and felt so loved in that moment. We went out to Outback (my favorite restaurant!) that night for dinner, but sadly, it was cut short as my raging stomach ache took over my body and we had to rush home to get me to the bathroom and into bed with a heating pad. 2 days later, the fun began! I was on an all liquid diet and began to drink my clean out medication. Well, my stomach was very angry and did not like the medicine and so it came right back up the same way it went down. Later that afternoon, I had a pre-op appointment at Children’s where we found out that I was running a 102 fever. So, after all the clean out medicine, I was told that I would have to do it all again the following week as it was not safe to put me under anesthesia with a temperature that high. Oh how I wanted out of this bad nightmare.
On February 3rd, 2005 I had my first colonoscopy and endoscopy that included 35 biopsies from areas in my large and small intestine. All 35 of them came back positive for Crohn’s disease. But we didn’t even have to wait for those to come back. My colon was so eaten up with Crohn’s that Dr. Russo came right out of the OR and told my parents what the diagnosis was. That afternoon I was sent home on so many medications that my mom had to create a chart for when I took what. We were told that Crohn’s was autoimmune and chronic which meant that it was going to be with me for the rest of my life. The medication that I was hoping for to cure my little “stomach bug” was not available. And to this day it still is not, but I know that in God’s beautiful and perfect timing, there will be a cure for Crohn’s!
My life changed that day in 2005. Crohn’s has brought out the worst colors in me and it has also brought out the best. Crohn’s has challenged me to do things that I didn’t think I was capable of doing. Crohn’s has brought me closer to my Savior. It has showed me my desperate need for my God every second of my day. Crohn’s has showed me who my true friends are. Crohn’s is a blessing. The textbooks may classify it as a disease, but it has become a part of my family. It has brought us closer together. Crohn’s is a beautiful thing. And the doctor’s that help Crohn’s patients are truly blessings from the Lord. Dr. Russo is someone that my family thanks the Lord for as he treated me with such kindness and compassion over the 7 years that he was my doctor. I have been blessed again with a wonderful adult GI doctor at UT Southwestern!
If you know someone that has Crohn’s, ask questions, ask about doctor’s appointments, ask about medications, and ask how they are feeling that day. We have our good days and our bad days, but our bad days can be made so much better when a sweet friend cares how we are feeling and tries to make our day better! The best of friends are those that aren’t scared off by our condition, but embrace it and love us through it. I am forever grateful for my family and countless friends who have walked this journey with me and will continue to until the race is over.
Be aware of the signs and symptoms of Crohn’s. Ask questions. Be informed.