My Crohn's Story

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My Crohn's Story

Post by CrohnieJane on Sat Jan 14, 2017 12:39 pm

My story starts just like any good story; Death, disease, and dangerously long. It's 2001, I'm 13 years old, and just like any 13 year old I'm excited to leave middle school and venture into the waters of high school. The only difference between myself and the average 13 year old wasn't much, at least not yet. Because before I knew it, my life was going to change forever.
It was April 28th, 2001, I'm at home getting ready to go to the movies with my friend Portia. As we are getting ready to leave the phone rings. I answered and my Aunt Sharon's voice comes through the phone. My Aunt Sharon never called the Bakersfield house phone. She was my Dad's brother's wife and my was down in Los Angeles. I remember thinking "Why is she calling here? She knows my Dad isn't here.". She asks to speak to my Step-Mom, Susie, and that's when I knew something bad had happened. I handed the phone to Susie and she stepped outside to talk to her. I see her face change, I see her start crying, and that's when I knew that is was serious. My Dad's parents were on the older side so I began to think something had happened to my grandpa. She hung up the phone and while holding back tears told me my grandma had passed away. I was in shock at first trying to understand what she just said. Then I collapsed onto the floor and began wailing. "Why her?!". I couldn't function, I couldn't do anything but scream and cry. Wanting to see her, not wanting to believe that she was really dead.
I was out of school for a few weeks and during that time is when I began having trouble digesting. Already being thin, I began to lose a bit of weight. Instead of talking to me about it, my parents ignored it for a while before accusing me of having an eating disorder. I was throwing up after my meals but it wasn't by choice, I just couldn't eat some things without it happening. Being 13, naturally thin, and pretty was already a struggle. I know what you're thinking, "pretty people problems" but it didn't save me from the other kids at school. They began to bully me for my weight, the way I dressed, the things I enjoyed, and my sexual orientation. My depression became so awful I contemplated suicide on many occasions. So I finally leave middle school and things didn't get any better. I was still bullied and my digestive problems started getting worse. It was a year later that my siblings and I were told my dad was sick. I had noticed something was wrong but I saw him on the weekends, I didn't really see how bad. He was going for test after test trying to figure out what was wrong. Eventually they diagnosed him with Crohn's Disease. At the time Irritable Bowel Diseases were not well known and were treated very poorly. Most patients were denied medicines, primarily pain medications, because doctors didn't believe bowel pain was a real thing. We're told it's all in our head, that we just need to watch what we eat, that there is nothing the can do. After another year my step-mom's friend read an article about Remicade. My dad brought the article to her GI doctors and asked why he wasn't on it. They told him they wanted to try anti-inflammatories first before trying something so extreme. My dad's case was extreme though and after some fighting they eventually put him on Remicade infusions every 8 weeks. It was a miracle for my family, my dad began to feel better, started putting weight back on, and feeling like his normal self again.
Now what about me, you ask? Well I'm being tested for different things. Acid reflex was what they come to and put me on Zantac. Nothing changed and I was starting to wonder if I had what my dad has. I developed anal fissures and eczema around my genitals and face. The anal fissures got so bad that I now have a large skin tag, which is mostly just embarrassing. From that point on I had abdominal pain, diarrhea, anal bleeding, and vomiting. I started seeing a GI doctor who suggests a colonoscopy, but since I was only 15 years old they did a sigmoid colonoscopy.It was incredibly painful and showed signs of inflammation and rectal fistulas. They started me on Imuran and gave me Darvocets for pain, it was then I knew my life would always be like this. As life continues my symptoms continue to persist and get worse. They do different tests to rule out any other conditions and disorders. 2004 comes, I'm in the end of my junior year of high school and at this point they have put me on Methotrexate. I had my first small bowel follow through and it took all day long. They said it doesn't normally take all so that was already an indicator that something wasn't right. The x rays showed evidence of a stricture that was over a foot long in my small bowel. Which is the cause of the test taking forever. They kept me on Methotrexate and told me I had probable Crohn's Disease. I lived every day ruled by my body and by now I'm a senior in high school applying for colleges and preparing for my adult life. I graduated high school in the top 15% of my class, I got two art scholarships, and was even accepted into a private art school and well as the local university. My symptoms were getting worse though, so my parents didn't want me going away to school my freshman year. My first semester was tough between having bad symptom days and going to the doctor. It was then that my doctor suggested a new test they had; a camera pill. For anyone who doesn't know what that is, it's a wireless pill that had a small camera in it to take pictures where scopes can't reach.
Now, are we paying attention still? Cause this is where it gets interesting. I had the first test done in December of 2005, it showed a bit of inflammation and bleeding, nothing too bad though. A month later I'm feeling even worse, they put me on a Prednisone blast and had me on Pentasa. Then wanted to do another camera pill to follow up from the first one. From there I just kept getting worse I eventually dropped out of university because the course load was too much and it was better than flunking out. By March 2007 I was in so much discomfort and felt that none of the medications were working. I stopped going to the doctors and started doing alternative medicine. I was watching what I ate and exercising a few times a week. I saw no changes in my health after stopping the medications, I didn't get better but I didn't get worse. By October 2007 I had lost weight to the point that my boyfriend at the time told me I needed to go back to the doctor. My GI does some blood work and the results show something making her want to do a third camera pill to check my small bowel. Within a week after the camera pill I started having trouble keeping any food down and the pain was unbearable. My GI does an endoscopy and colonoscopy, both show no evidence of what's causing me to hurt so much and vomit as much as I was. After almost two months of vomiting constantly I began losing weight, I was 110 pounds in October before the third test, it's now December 9, 2007 and I weigh 82 pounds. I was taking medication like they were tic tacs and my GI still had no idea what is causing me me to vomit and have pain. So on December 11, 2007 I went to my regular doctor. I told her all my symptoms and she suggested an x ray. As I head over to radiology I can only think, "Why didn't Dr.Howard do an x ray?". I do my x rays and the tech asks me to wait, she then asks me if I had removed all my clothes besides my underwear. I tell her that I did as she told me and she has a look on her face that was easy to read. She saw something. She asks to take it again because she wasn't to confirm what she saw. When we're done she hands me my x ray and tells me to take it to my doctor right away. I do as I'm told and go back over to see my doctor. She put the x rays on the;light box and that's when, to our surprise, we saw 3 foreign objects. It took me a minute to figure out what I was looking at and that's when it clicked. I had all three camera pills still inside me.
She hands me my x ray and since I already had an appointment the next day with my GI doctor I prepare for what's about to happen. I tell my dad, he was angry at first, and he said we needed to go pull all my medical records before anything else happens. By this time I'm so tired, so malnourished, and could literally feel my heart having trouble pumping. December 12 was the day I lost faith in doctors, after showing my GI doctor my xray she actually had the nerve to blame me. She told me "This is what happens when you don't take medication". I'm looking at having foreign objects removed from my small bowel and she blames ME. They rush me over to the hospital and began prepping me for surgery, they couldn't get an IV in my arms because I was too dehydrate. They talked about putting one in my neck and I vetoed that right away. So they put a PICC line in and started me on IV fluids, TPN, and pain medication. I finally felt some sense of relief because for the last two months I was in constant misery. They did my surgery and immediately upon my return to my room for recovery I got a wave of pain, turns out I can't have a catheter. I also found out how horribly insensitive nurses can be. None of them seem to pay attention to what was really going on with me and made me feel all around annoyed with how they treated me. I slowly began my recovery, my dad would help me go for walks, when they started me on liquids, he encouraged me to try even though I didn't want to eat yet. Then the pain came back with such force I thought I was going to die, again. I slowly watched my blood pressure rise, I slowly noticed 1 mg of morphine wasn't lasting me more than 20 minutes. But I really noticed when my bed got bumped the pain was awful. It was four days later before it finally chewed out a nurse and told her to get my surgeon before I went postal. They did a CT scan and found fluid had completely filled my body cavity and 80% of my right lung. My surgeon said I had hours before it would have killed me. Had my nurses done their job monitoring the correctly it would have been caught much sooner than maybe I wouldn't have needed to spend three days in the ICU. I began feeling a lot better and was even able to stand up and sit down unassisted. I spent the next week and a half recovering before they put me back under to do my stitches to send me home.
Now almost 10 years later I'm still dealing with the repercussions from that experience. I have now been hospitalized a dozen times for bowel obstructions. I've tried every medication on the market and now I've stopped responding altogether. They refuse to do surgery, mostly due to me not having insurance but no one will say that. Instead they make it like I'll benefit more from not having the surgery. I'm at the end of the line, the end of my rope, the final straw, and no one seems to care but me. It has made me realize that they may never be able to help me so I need to do it on my own it starts with quitting all my bad vices I've picked up to cope with my illness. Then keeping up on motivating myself and having something like this to reinforce the idea that I need to be better to my body. I only have one life on this earth and I'm not doing myself any favors by smoking, drinking, and eating poorly. If I'm going to have a shorter life because I have the disease that can't be treated, I'm going to have to be my own "doctor" and do my best. I have accepted and I will die from complications associated with Crohn's one day, but I'm not going down with out a fight.



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CrohnieJane
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