While I have other illnesses that significantly impact my life, here is some of the story of only the Inflammatory Bowel Disease I have been battling.
Twenty years.
Let that sink in for a minute.
Some of the people that I grew up with, and other people my age, now have children the age that I first became ill.
I woke up in November of my grade nine year thinking that I had the flu. Nausea, stomach pain, and the runs. Apart from that, I was just like anyone else. I had friends, I had crushes, and I worried about the difficulties of not being one of the popular kids. I took the bus to school, I was taking music lessons, and even participated in city musicals. I was deeply involved in sports (namely volleyball, basketball, badminton, and track), went to church on Sundays, and was an honours student.
After two weeks, the flu hadn't subsided. Not only that, but there was blood. Quite a bit of blood.
I went to see our family doctor who immediately felt inflammation in my intestines. He sent me for a scope and to a pediatric gastrointestinal specialist.
I was 14, it was the year 2000, and I had never heard of organs being 'inflamed' before. I had never heard of Inflammatory Bowel Disease. I had never heard the word 'chronic' to describe an illness before. In my small mind at that time, if people got sick, they either got better within a few weeks or months or they died. I had no glimpse into the world of constantly ill; of incessant pain. I was ignorant to its existence.
After my first colonoscopy/endoscopy combo, I was sent to a bigger city centre at a children's hospital to see another specialist. The official diagnosis from his office came in January of 2001.
That year I missed over 200 classes.
I learned what it felt like to be in the 5% of patients who get pancreatitis from certain medications, and was hospitalized for that adverse effect four times that first year. I also developed liver problems, went on a corticosteroid, and had to cut nearly everything out of my diet. I learned what it feels like to have no control over one's body - including weight, bathroom breaks, pain, nausea, mood swings, and energy. Every month we would drive to see my specialist in the big city and I would have a sigmoidoscopy right there in his office, and I had to get bloodwork done as much as twice a week those first few years.
I went from being a normal 14-year-old girl going through puberty to another beast all on its own. (Puberty and Prednisone do not mix well). My parents became friends more than parents. Our conversations changed - our whole world had changed.
The doctors spoke about removing my large intestine several times over the course of the first three years. I was reluctant. I was damn stubborn. I wanted to try every possible avenue first. But when severe dietary restrictions didn't work, when I showed allergies to most of the medications, when I dealt with incontinence several times each and every day, when my body could not function without Prednisone, and when the blood just wouldn't stop, surgery was inevitable.
My large intestine was removed around a week before my 17th birthday.
It had actually been scheduled on my birthday, but they found out so they moved it up instead.
I woke up with a long line of a vertical scar (this was before it could be done laparoscopically), and stoma and ileostomy bag on my stomach - I was 3 feet smaller and 6 lbs lighter (and a picture of my intestine and appendix for a souvenir to prove it).
Unfortunately for me, the ileostomy was fraught with complications. The Colitis around the ileum never settled down. It didn't settle down in the cuff at the other end either. I was also allergic to the adhesive to keep the bag on my skin. So I had the choice of breaking out in painful and large welts or risk leakage. Turns out, I dealt with both. Due to these complications, it meant that I could not swim or bathe with the bag attached, so I could only shower every five days when I would change my ileostomy bag.
It's safe to say that, with all of these complications, I felt disgusting. All the time.
Then, about two months before graduating high school, the ileostomy was reversed. I got to be off of Prednisone, I got to enjoy my graduation, and was hoping to be 'cured'... or as cured as one can get with Ulcerative Colitis.
Only a few months later, I was having similar (but not identical) symptoms. I was diagnosed with Crohn's Disease that summer. I also continued to have chronic inflammation of the leftover cuff and the newly formed j-pouch. A makeshift cure was no longer in the cards. This was for life.
Then began a domino effect of other organ complications, other diagnoses, and a laundry list of new symptoms to fight with. It is a battle every day. It is the battle that started everything else. Inflammatory Bowel Disease was my body's trigger to then fight so many other organs and tissues.
One day the picture of health, the following day showing signs of a flu, one month later being spoken to about surgeries, a potential need for a liver transplant, inflammation in my intestines and pancreas, hospitalized for allergic reactions, losing blood... missing school, missing lessons, missing sports events, and living an entirely new life while trying desperately to hang onto the life I had been living, and doing every single possible thing to try and feel better.
As of today, my missing organs include by large intestine, appendix, gallbladder, uterus, and both ovaries.
The question is: can I do another twenty years of this?
Yes. Yes I can.
Hell, give me forty. Give me fifty.
I have had my doubts before, of course. Who wouldn't? But I know I am capable of continuing to fight.
This year I turned 34 years old. I am battered and bruised, scarred, and taking life day by day. I've made it twenty years with this awful disease, and I'm still going. The most important thing is that I have found happiness and fulfillment within my life. Not just in spite of it, but also because of it.
Let's go another twenty years, shall we?
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