My invisible disease

Update

Hello people who are reading my story !

Anyways, it is currently 1:36 am on July 7 2018 in the oh so sunny Florida.

About 6 weeks ago I was hospitalized for 6 days after continuously getting worse over a period of 3-4 months. I was admitted on a sunday and Released 6 days later on a Friday. The day after I was admitted, I was given a colonoscopy which confirmed that my Colitis had gotten worse. Before, it had been only 9 cm of my colon but now my disease has reached 45 cm.

I had tested positive for C-Diff which is a bacterial infection which causes diarrhea and urgency and many UC patients test positive for this specific infection. My entire duration of my hospital stay I was in isolation which meant that everyone who visited had to wear yellow gowns and gloves and i wasn't allowed to leave my room.

My doctors combined every education I had eve been on in hopes of getting it under control. I was put on IV steroids, IV fluids, prednisone (oral steroid, 40 mg daily), methotrexate (chemo injection, 1x week), folic acid, solmedrol (IV steroid every 2,4,6 weeks), vancomycin ( antibiotic for C-Diff, 4x daily), Sulfasalizine (5-ASA, 4 pills 2x daily), Entyvio (IV medication, 1x every 2,4,6 weeks). Im currently still on all of these medications with the exception of IV fluids, IV steroids, and Vancmcin. The one thing im concerned about with all this medication is if Ill ever be able t have Children due to the extent of my treatment

I missed two weeks of school, all of my sophomore finals, and the chance to say goodbye to all my friends for the summer.

To be quite honest: it sucked. I love school and I was missing the end of the year. I missed 27 days of school last year due to my colitis.

For those of you reading this and have colitis: please note that flares are scary. They come when your stressed, overworking your body, or just when your immune system is low. TELL SOMEONE if you even think your flaring. Please please please dont let it get out of control.

For those of yo reading this without colitis: it's scary, and not something you can see. Those of us with this disease dont like to talk bout out poop and blood but try to be understanding if someone you know cant hang out because they're sick or refuses to eat certain foods. It isnt a disease thats easy to talk about or comprehend but we appreciate it when you try.

But also: I'm a special case. My body adapts to keep me from going anemic and stabilizes the rest of my body when one specific level is to low. My levels are always balanced even if it isnt in the place it should be. My body builds resistance to every medication its given which is why I specifically flare so often if your new to the colitis wold, it isn't normal to flare every 5-6 months. At the specific hospital and medical group im apart of, there are only a few of us who don't react long term to treatment and we all basically face the same prognosis.

My Next step is a second opinion at the MAYO clinic but my insincere wont pay for it so we are going to hope these meds wil stick and work long term. However if they don't, I willl most likely be having an Ileostomy bag for awhile then an internal Jpouch- my colon will be removed and replaced with a bag on the outside of my body until they can connect my small intestine to my rectum.

Im currently living my life normally, hanging out with friends, working at a candy shop, and watching netflix. My 16th birthday was last week so Im now licensed and driving. I made the varsity cheer squad and get to go to Baltimore in September. I refuse to let my colitis stop me and although i may be living without a colon a year from now, I know that what happens happens. I trust my doctors and nurses and trust they know what's best for me.

I am going to be starting a paleo diet (or at lest trying to) this week to see if it improves my Colitis and helps me lose some of the weight Ive Put on due to the steroids ( steroids make you retain water, gain a round face and feel puffy all over).

If you have any questions about colitis or need someone to talk with because your new to this or scared, jut comment.