What is Colitis?
Before I was diagnosed, I had never heard of Ulcerative Colitis. I was ignorant to the disease, its symptoms and the hell that came along with it. For those who are in the same boat as I was, here’s a quick overview. Colitis is an autoimmune disease. The immune system sees the large intestine as an intruder and attacks it causing inflammation, ulcers and bleeding. This leads to cramping, constant abdominal pain, running to the bathroom 20+ times a day and anemia. Yup -it’s shitty.
My Intro to Colitis
My dance with this sexy disease started in January 2014, although I wouldn’t be diagnosed until May. All the above symptoms started and being only 21 years old I was foolish and tried to ignore the symptoms in hopes they would just resolve themselves. When 4 months went by and my symptoms continued, I finally went to my family doctor (I owe this saint of a woman my life). She listened to my problems and referred me to a gastroenterologist and said she suspects it to be Crohn’s or Colitis -two words I’d never given a thought to and didn’t realize were about to become my entire life.
Emergency Round One
I physically couldn’t wait for my specialist appointment and ended up in the emergency room later that month as my pain had become so aggressive. Besides the pain, I had lost so much blood I was dizzy and faint every time I stood up. I was admitted for a week and received IV steroids (prednisone), along with a drug to treat my symptoms long term as steroids are only a short term fix, they are very hard on the body and have terrible side effects in themselves. However, the prednisone did its job and the inflammation subsided and I was discharged with oral steroids to taper down for the next 8 weeks. All was good…. for 8 weeks.
Starting to get scary
Once I finished the prednisone, despite being on another medication my symptoms returned almost immediately. This time they were worse, more blood, pain, humiliation…I was now 22 and living my life in a dark hole. I wouldn’t leave the house or go anywhere unless I knew the location of all private bathrooms. I didn’t sleep longer than 2 hours at a time as I was constantly going to the bathroom and had chronic pain. I was exhausted. I tried to be tough and wouldn’t take any pain medication -not that Tylenol or Advil could have touched the pain. I was in a dark place. By this time, it was August and I had a trip planned to BC with Evan (my now husband) and his family that I was determined to go on. However, a few days before our trip I could barely get out of bed and up the stairs by myself. My mom (another saint who I would not be here without -there will be a separate post on the amazing people who got me through all this) took/hauled me into RUH emerg for the second time. They admitted me immediately when they saw my hemoglobin (the amount of blood in one’s body) was at 62. For reference someone my size should be sitting at a number roughly around 120. Yup -I had half the amount of blood in my body as a healthy person. I was put back on IV steroids and was given my first blood transfusion. If you have ever donated blood -thank you. If you’ve wanted to donate but don’t know what it’s about, check out this link.
To be honest being transfused was a little freaky. Watching someone else’s blood go through my IV made me a little uneasy and I had to look away for most of the hour. But none-the-less, thank you anonymous donor!
A Rare Case
I was discharged 4-5 days after the blood transfusion and went home slightly better but still not great. By this point I was down about 10lbs and my muscles had atrophied from not having the energy to do more than lay in bed. Unfortunately, a few days later I was back in the hospital again. My insides were so sore and inflamed that they put me on a clear fluid diet for 4 days. Everyday I only had 2 cups of soup broth and a few pieces of Jell-O, (I hate Jell-O to this day). This time I was put on an infusion drug called Remicade. This is a drug that must be administered directly into your system through an IV. I would have to go to an infusion clinic every 6 weeks and have an IV drip for 4 hours for treatment. This drug is also very expensive as each infusion cost $3,000. Thankfully we qualified for exceptional drug status and the government covered 98% of this cost and our insurance covered the rest. This drug seemed to do the trick and I was discharged feeling better and down another 10lbs. Yup- 20lbs down in just under 3 weeks. I was so weak and discouraged. I was feeling better but I never let myself get too hopeful, I knew it could all change overnight. Prednisone took care of the weight loss problem and I gained all the weight back plus another 10lbs within the month. Prednisone side effects for myself included:
· weight gain and what people refer to as “moon face”,
· mood changes/aggression/agitation -I would get so angry and it would come out of nowhere.
· Headaches -I never got headaches before this
“moon face” mugshot
A visible side effect of prednisone, along with excessive weight gain. The other side effects were not visible but they were frustratingly felt.
But despite all this I wasn’t in constant pain and tried to get back to “normal life”
False Hope
Life started to get back on track. I began my first year in the College of Education, made some life-long teacher friends and pretended that life was going to be normal from now on. I knew in my gut (lol) that this wasn’t the end. The infusions were working. I tapered off my prednisone and this time I didn’t have a flare. September, October, November, went by and I was feeling like myself again after almost a year. My body stopped attacking itself. I started to socialize again, workout and go places other than my house and university. I hung out with my new friends and went to a few parties like a regular student and even hosted my class’s Christmas party.
It looked like I was going to end the year on good terms and have a fresh start come January. Unfortunately, that’s not what my new year would bring.
Part II coming soon.