Rachel’s story: living with Crohn’s disease

Rachel Botros, 19, has suffered from Crohn’s disease since she was a 14-year-old. The chronic condition interrupted her schooling and ability to live a typical teenage life. Her two siblings also have inflammatory bowel diseases (IBD) – Crohn’s and ulcerative colitis. This is her story about living with Crohn’s disease.

Over 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.

Then I told my parents and they said, “We need to tell the doctor straight away.”

Crohn’s disease: how I was diagnosed

I was taken to a hospital emergency department where 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 getting way more symptoms – abdominal pain, I went to the bathroom over 20 times every day, vomiting, loss of appetite and weight loss.

It just got a lot worse after diagnosis.

Finding a Crohn’s disease treatment

So then we tried a lot of different medications. Some of the medicines didn’t work at all. And then some worked at the beginning, or they seemed to be working but then there were often some terrible side effects, or the medication was just not working well enough, and I’d have to change.

One of the medications I was on ended up poisoning my liver and I had to go to emergency. I think I vomited 15 times in one day. Another medication caused me to have an anaphylactic reaction. Another involved having a weekly injection, and I couldn’t handle it as it was really painful.

I usually see Dr Edward Giles (Hudson Institute inflammation researcher and Monash Health consultant paediatric gastroenterologist) every two months, but at my last appointment, they said I can see him every six months because I’m doing so well. He said I’m in clinical remission, and I will continue taking this medication, Stelara, for as long as it works. It’s thanks to the medication that I’m on now, which was the last option for me to try before having to go into clinical trials – that I’m doing well. I’d tried everything else.

What is it like living with Crohn’s disease?

When I was first diagnosed I was scared, confused, sad. I was like, “Why? Why am I the one to get Crohn’s disease?” I was only 14, felt very unlucky, and I didn’t fully 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 that’s good. There’s a lot of things that I learned from it about myself. I can handle more than I think – I’m pretty brave.

Every time there’s a challenge that I think that I truly can’t get through, I look back and I think, “Well, I did that, I survived that, I can do this!”

When I was in a ‘flare’, I couldn’t really do much. I couldn’t go to many social events, like parties and things. That was hard, especially when you’re so young – that’s the prime time for making friends and socialising. Not many of my friends really understood what I was going through. I’d try to explain it, but it’s hard enough 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 out, especially when I explained my situation. For Year 12 I got special allowances during my exams, because I was allowed to go to the bathroom any time for as long as I wanted and I would get that time that I missed going to the bathroom back, so that I wouldn’t be disadvantaged. That really helped – thinking about having exams and missing that much time caused a lot of stress. Stress exacerbates my symptoms a lot.

Sibling connection to Crohn’s disease and IBD

My brother and sister also have IBD, which I know is strange. Because we had it at around the same time we understood what each other was going through.

I’m the youngest of three. My brother is 31 and he got ulcerative colitis when he was in primary school. He had to have his whole large intestine removed, but then after that he was pretty much in remission. My sister is the oldest, she’s 32. She was diagnosed with Crohn’s disease around the same time as me. She’s not really in full remission yet, but about the best that she’s been.

It was really hard on my parents to have three kids all with the same issues. 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’re all managing our conditions. We’re all doing well, achieving things in our lives, feeling better, not sick all the time.