Rachel Botros, 19, has suffered from Crohn’s disease since she was 14. The chronic illness interrupted her schooling and her ability to lead a typical adolescent life. Her two siblings also suffer from inflammatory bowel disease (IBD) – Crohn’s disease and ulcerative colitis. This is his story.
For a few weeks when I was 14, I noticed blood in my stool. A lot of blood. At first I was scared – I didn’t really know what to do about it. But then I told my parents about it and they said, “We have to tell the doctor immediately. “
Crohn’s disease – how I was diagnosed
I was taken to the emergency department of a hospital where the doctors did a whole bunch of tests – colonoscopy, gastroscopy, MRI, blood tests – and finally concluded that I had Crohn’s disease. After that, I started to experience a lot more symptoms – abdominal pain, I went to the bathroom more than 20 times a day, vomiting, loss of appetite, and weight loss. It got much worse after the diagnosis.
What is Crohn’s disease?
Crohn’s disease is an inflammatory disease that affects the gastrointestinal (GI) tract. It is incurable and usually chronic with flare-ups ranging from a few days to several months and affects appetite, energy and bowel movements. Symptoms vary from person to person, but can be serious. Crohn’s disease can occur at any age, but most people are diagnosed between the ages of 15 and 30. There is no cure. Along with ulcerative colitis, Crohn’s disease is classified as an inflammatory bowel disease (IBD), which affects over 80,000 Australians and is on the increase, particularly in western countries and increasingly in developing countries. It is expected that 1 in 200 Australians will develop IBD.
Finding a cure for Crohn’s disease
So we tried a lot of different drugs. Some drugs did not work at all. And then some worked at first, or they seemed to work but then there were often terrible side effects, or the drug just didn’t work well enough, and I had to change.
One of the drugs I was taking ended up poisoning my liver and I had to go to the emergency room. I think I threw up 15 times in one day. Another drug caused me an anaphylactic reaction. Another involved having a weekly injection, and I couldn’t take it because it was really painful.
i usually see Dr Edward Giles (Hudson Institute inflammation researcher and pediatric gastroenterologist consulting Monash Health) every two months, but on my last appointment they said I could see him every six months because I’m doing so well. He said I am in clinical remission and will continue to take this medicine, Stelara, as long as it works. It’s because of the medication I’m on now, which was the last option for me to try before having to do clinical trials – that I’m doing well. I had tried everything else.
What is it like to live with Crohn’s disease?
When I was first diagnosed, I was scared, confused, sad. I said to myself: “Why? Why am I the one with Crohn’s disease? I was only 14, felt very unlucky and didn’t really understand what it was or why I had it, which took a long time to get used to. It was hard, but I think it made me stronger so it’s good. There are a lot of things that I learned about myself. I can handle more than I think I can – I’m brave enough. Whenever there’s a challenge that I think I really can’t take I look back and I’m like, “Well I did that, I survived that, I can do it. ! “
When I was in a “rocket,” there really wasn’t much I could do. I couldn’t go to a lot of social events like parties and stuff. It was tough, especially when you’re so young – it’s a great time to make friends and socialize. Few of my friends really understood what I was going through. I would try to explain it, but it’s quite difficult for me to understand, let alone them.
How Crohn’s impacted my education
I missed a lot of school. But my teachers were very understanding and tried to help me, especially when I was explaining my situation. For year 12, I had special allowances during my exams, as I was allowed to go to the bathroom anytime for as long as I wanted and I would have the time I ran out of. go to the toilet, so as not to be disadvantaged. It really helped – thinking about taking exams and missing so much time caused a lot of stress. Stress makes my symptoms much worse.
Sibling Connection to Crohn’s Disease and IBD
My brother and sister also have IBD which I know is strange. Because we had it around the same time, we figured out what the other was going through.
I am the youngest of three. My brother is 31 years old and he had ulcerative colitis when he was in elementary school. He had to have his entire large intestine removed, but after that he was pretty much in remission. My sister is the oldest, she is 32 years old. He was diagnosed with Crohn’s disease around the same time as I was. She’s not quite in full remission yet, but about the best she has been.
It was really difficult for my parents to have three children with the same problems. They thought it was their fault. They thought they should have done something to prevent it. But it’s definitely better for them now to see that we all deal with our conditions. We’re all fine, getting things done in our lives, feeling better, not sick all the time.