Living With UC

I am not sure if anyone on this site has Ulcerative Colitis.... But I guess I'm going to blog about it.... (PS this is my first blog... like ever :/)

I was diagnosed 2 months after my 18th birthday with UC. Incase someone is reading this and doesn't know what UC is.... I guess I will explain it in a little detail....

I'll start from the beginning of my story for you to understand UC better...

Just after Christmas in 2011, my stomach started feeling weird. It was gurgling and I was in intense pain. After a few days of that.... Al hell basically broke loose. See with UC, the large intenstine doesn't absorb nutrients, and causes you to have diarreha... This happened from Christmas time 2011, until about March 15 2012. My mom was getting more and more worried about the whole ordeal because there was blood in my stool... This is a sign of internal bleeding. My mom took me to the ER and that night I was booked for a colonoscopy the following day.

The next day, after much coaxing, my mom took me to the hospital to have the procedure done. 15 minutes of trying to find a vein in my hand, since I was getting dehydrated, because you cannot eat or drink before a procedure. I went in, and was out in 15 minutes I had the results of the test. See I have about a dozen Ulcers throughout my entire intestine. So when my mom told me what the diagnosis was, I was pretty confused. Everyone hears stuff about Chron's, and Fibromyalga.... but with UC, there's nothing out there that explains to the general public what this is. It is a silent battle to keep it under control so that it doesn't become cancerous, and potentially kill you.

So my GI doctor put me on this one pill called Salafalk. I had to take 4 pills, twice a day... and they weren't small pills either, huge pills that you had to take one at a time. After about a week and a half on these pills, I started developing lower back pain. A week later, I was throwing up the second I woke up. I went to the walk in clinic multiple times, and everyone just thought it was my body adjusting to the new medication. After about 3 weeks, my mom took me to the hospital because I wasn't getting any better. After waiting for a long time in the hospital bed, and various times trying to get the IV in my hand, my blood work had come back. This enzyme in my blood, that is supposed to be lower than 20 in a healthy adult, was almost 6000.... The doctor told me I had pancreatitis.

See pancreatitis is difficult to diagnose. And the normal causes of it are excessive drug and alcohol abuse, diabetes, or family history. None of these applied to me. So the ER doctor googled the medication I was on, because he was not familiar with it, and it found that in 0.01% of paitents on Salafalk developed pancretitis. Easter weekend 2012, I was admitted into the hospital, on a strictly IV only diet. No food, nothing to drink, to rest my pancreas. If pancreatitis persists undiagnosed, your body becomes septic, and essentially you can die from it.

So after that, I say my GI, and he put me on another drug called Imuran (sidenote, there are only 3 medications in Ontario that can treat UC, and I have an allergic reaction to one of them) After being on Imuran for another week and a half, I started getting back pains again, and I was throwing up, so my mom drove me to the hospital again, and that enzyme I mentioned above, was almost 4000.... so for a week, I was in the hospital. Mother's day of 2012, my mom had to spend it in the hospital with me. I was discharged on a Monday, and unfortunately, my Prom was the upcoming Friday. Because of the pancreatitis, I was weak, because I was laid up in bed my entire hospital adventure. I did not go to Prom, prompting my best friends in the entire world to pass around a picture frame and sign it telling me to get better, then they took a picture of themselves, looking absolutely GORGEOUS and gave it to me my first day back at school. I was off school for an extra two weeks, to recover, and to become hydrated again, because of the throwing up, I was becoming more and more dehydrated.

Anywaaaays, over a year later, I am on the final medication that will be able to help me. I go into a clinic, every 6 weeks, to have it injected into my body. It takes 4 hours, on a Saturday to get all the medication into my blood stream.

I don't have insurance to cover my medication, and this med (Remicade) costs upwards of 40 thousand a year... I applied for the drug coverage that my province offers for those who cannot pay for it themselves, and they denied me. Why did they deny me? Because I didn't take steriods for 12 weeks before starting Remicade. They wanted me to go off Remicade, go on Steroids, and if they didn't work, go back on Remicade. But the problem is, if I am off of it for a long period of time (longer than 8 weeks) my body will create anti-bodies and Remicade will become inactive within my body. Apparently my province would rather have a yooung 19 year old die of cancer rather than pay for the only medication she can recieve to help with this disease.

So every 6 weeks, I go in and recieve this medication on the dime of the company that makes the medication. And for that, I owe them my life <3

Interesting Facts about UC

Everyone is different

It is hereditary (No one in my family has it)

People with UC usually develop Lactose Intolerance

Rice and whole wheat are now evil in my diet (along with popcorn)

And UC is absolutely terrifying.... Most nights I am up crying about it....

You are extremely brave and real inspiration x