16 year olds are supposed to have broken hearts, not disease!

[KippytheKrohnie]

I'm the sperm that won and was given the unique name "Kippy". I had a very stressful childhood after my parents split when I was in second grade and ever since I can remember I have been in and out of hospitals. I was exposed to TB when I was in preschool and went through months of treatment. At four years old I was already having to swallow 16 pills every day. Little did I know that was just going to be practice for what was to come! Having two older brothers and despising the taste of milk, by the age of 12 I had already broken my wrists 9 times. At 13 is when things started to get rough for me. My pain tolerance is extremely high so when I would complain about an upset stomach my mother knew it had to be "doctors visit" worthy. What's that? It's just a stomach bug that's going around and should clear in a few days? Okay, so I stop eating solids and stick with my favorite go-to frozen dessert-Italian ice. Wait a couple of a days and lose a couple of pounds.. wouldn't you know? No more pain! But then it became a monthly...weekly... daily battle. I was at the point where I was used to being in pain. In 2009 I moved to North Carolina to live with my dad and continue high school. Two more years of stomach pains and BS answers from physicians. "It's your menstrual cycle", they said. I know my body better than anyone else does. I KNEW it was something more; something serious. Memorial Day weekend of 2011 my dad planned a trip up the Blue Ridge Parkway for him, my older brother and I. I tried to talk my dad out of taking the trip because at this point I wasn't even able to keep down water and would pass out every 10-15 minutes. But on we went. While they spent the weekend hiking and swimming I sat there in the room in extreme pain and what seemed to be a silent cry (to everyone else, at least). My brother could see from my blue lips and pale face that I was extremely dehydrated. I would try drinking water or eating cubes of watermelon but nothing stayed down. When we returned to Asheville my dad was hesitant about taking me to the ER because he knew from working in hospitals all his life that people will do whatever they can to get a few more days off after a long weekend. So to avoid the crowded ER, he took me to Urgent Care. The second I got through the door I passed out. They saved the paperwork and took me back right away. They were pushing fluids through me as fast as they could but it still wasn't enough. They told my dad that he had the option to take me to the ER or they would. I got to the ER and continued with more fluids and lots of people pushing on my stomach. They did lots of tests, ultrasounds, xrays, and CT scans. The only problem was that I couldn't even keep down the contrast they wanted me to drink. They put me on morphine and kept me while they waited for results from tests. Still in the hospital three days later, one of my CNA's came in my room and said with as much enthusiasm as you could say "so, you ready to get this surgery over with??". This was the first any of us had heard about it. After we asked her what the hell she was talking about she quickly turned around and bolted out the door. Only to return with the surgeon and the GI doctors that had been talking with me. They said they needed to perform emergency surgery on me. I didn't have time to get nervous or scared. I really didn't know what to think at all. A CNA spills the news and 30 minutes later I'm in a pre-op room. They removed 2 feet of small intestine, and some of where my large intestine started and took out my appendix "just because they were there". It took me four days to even get the courage to look down through my hospital gown to see where they had cut. My GI doctor came in and told me the news: Crohn's disease. So what? I had never heard of it before. I didn't care and I didn't want to know. But with more talk and more visits from people, I could tell it wasn't going to be as easy as I thought. I made my dad go home that night so I could be alone. I broke down. 16 year old girls were supposed to have broken hearts, not diseases. They put me on methotrexate. I had to give myself a shot on Friday after school then feel like crap for the rest of the weekend. So I stopped taking it. They put me on 6mp- I can't remember to take pills for the life of me. So I stopped taking it. I fell out of remission this past summer and ended up back in the hospital. I am now waiting for my appointment with the center for infectious disease so I can see if I am able to take Humira after my exposure to TB in preschool. Just last week I got my tattoo of the crohns and colitis symbol tattooed on my forearm with the month and year I was diagnosed. Just like all of you, I have a story. And just like all of you, I struggle to not let this disease control me. Some days are harder than others but I will always stay hopeful simply because there is no other choice. I am stronger than I will ever admit and in these past 30 months I have learned more about myself than I ever thought possible.

 

[***Lisa***]

Hi Kippy:

What a journey you have had! You are in good company with lots of strong Chronies & their family & friends here in this forum. Please keep us posted on your progress during the coming months.

Lisa

 

[iriechic]

I am sorry about all you have been through! I do think each of us have difficult stories as inflammatory bowel disease is no joke...so please don't feel alone. You have understanding company on here. And I totally agree: 16 year olds should have broken hearts, not disease. God bless you. Keep on keeping on! PS I used to live in Asheville.