My Journey’s Beginning And A Reality Shaking Diagnosis
Before you read anything about my story, I feel I should warn you…it revolves around the less glamorous symptoms and disease family. So it’s not unlikely for me to refer to blood, guts, and poop (yup, you read that right). Yes, it’s humiliating but it’s also empowering to just talk straight about disease. So, now you’ve been warned 🙂
I should really stop eating from the vending machine…
I was a junior in high school and enrolled in a few classes at the community college to get college credit from the dual enrollment program. I was taking two classes, Physics and Spanish. I was 16 years old, ready to take on the world and plan for my future as an adult…. graduate, go to college, get a great job, have a family, live “happily ever after”.
One day I realized that I hadn’t felt very well for at least a week or two. I assumed it was the mad intake of vending snacks while studying and taking my college courses. Then I got the true scare…. what started as bloating and diarrhea turned into bloody bathroom visits and one very freaked out teenager. Of course, I didn’t mention anything yet…it surely wasn’t bad and I was just being overly paranoid with a terrible snacking habit. So I continued trying to eat better and just waited to feel better as a result (hello denial!). That was September.
It wasn’t until a month later that I told anyone about my symptoms. I was with my mom and Girl Scout troop for a charity walk when I got extremely nauseous and weak feeling. Of course I had been super smart and barely ate breakfast, and apparently I was getting really pale and sick looking, so my mom grabbed me some snacks (yogurt, juice, and a snack bar) to help settle my stomach. The food helped me feel a bit better and I was just ready to stop feeling like everyone was looking at me (what can I say, I like being a wall flower). We all did the race but I quickly fell behind, having to stop periodically or sit on the curb because I just did not feel good anywhere….stomach discomfort, nausea, general weakness…nothing like I’d ever felt before. On the drive home, my mom asked “Are you really ok? That’s not like you….is there something going on?”…..well, I couldn’t deny it any more. Fear was really setting in and I knew that after a month of me trying to feel better and only getting worse, I needed help. She instantly said we should see a doctor so we scheduled an appointment with my regular doc and waited to get his thoughts.
What is wrong with me?!
After explaining things to my doctor, he referred us to a GI (gastroenterologist) specialist. We made an appointment and they ran a few blood and stool tests and decided the best option to figure out the culprit was to get a colonoscopy. Of course, the thought of this was gross (I don’t do guts and body fluids) and the prep drink was so nasty I about threw up just because of the flavor. But, I did everything I was supposed to and my parents drove me to the hospital so I could get checked in and prepped for the procedure. I was nervous and worried but I’m pretty good with distractions, and I didn’t want to worry my family, so I brought a book with me (thank you Harry Potter) and read that until the last minute before they pulled me back for the procedure. I’m so glad I had anesthesia, because I didn’t want to hear, see, or feel anything during the procedure. As I began to wake up, my first memory is me repeatedly asking my mom “what time is it?”. I must have asked a million times…literally asked every minute, until the point I remembered asking but couldn’t remember the answer so I asked once more “Mom, I remember asking so I’m sorry, but what time is it?” I didn’t want to be stuck there all day or have my parents wasting their time waiting for me.
When the doctor came back to speak about what he found, there were plenty of terms and images from the procedure (you guessed it, I looked away for most haha). He spoke of ulcers, inflammation, and the fact my entire colon looked like a mess. Based on these findings and my symptom progression, it appeared I had ulcerative colitis. Most people would consider that a terrifying thing….chronic disease, trashed intestine…but my first emotion was relief. The way I had been feeling had a reason behind it that is known and has treatment options! It was also the less severe version between UC and Crohn’s (which impacts your entire GI tract), even if it’s a little more stubborn to respond to treatment.
What do I do from here…
Aside from feeling some relief to have a name for my symptoms, and reassurance that I wasn’t imagining things, there were options and a plan to try and get better. My goal was to begin the medication and hope for ‘remission’ status to come quickly so I could get on with life!
Unfortunately, it took me a year of multiple medications, steroids, procedures and hospital stays (my longest causing me to be admitted in summer and leave in fall). That year was a roller coaster of emotions; relief of a diagnosis, worry about my symptoms, fear that I wouldn’t get better, depression that I was being punished and would never get better, suicidal because I was a huge burden and maybe my family would be better off without me, excitement that a new treatment seemed to help, sadness that it didn’t work for long, frustration that it seemed I wouldn’t get adequate care without my advocates (my parents were amazing fighting for good care)… But, finally after my final and longest hospital stay (also under a new doctor), I began a new treatment that had be gaining back the 40lbs I had lost, returning health and nutrition to my body, and providing me hope again for a future.
Moving from the diagnosis to a life with a chronic illness wasn’t easy, but somehow I managed ‘gracefully’ – so I’m told. My focus was always to do everything I could to protect those I loved and to distract as much as possible when things seemed impossible. If you or someone you love is struggling with chronic illness, you aren’t alone! There are resources to help with decisions and chat rooms and organizations that can help you feel less like the only person living in a nightmare (if you’re comfortable at least listening to the stories of others 🙂 ). So, know you are loved and reach out for help when you need it!
Be well and take care,
~ Jennifer