Not Giving Up
Paige Rosenberg withstands the trials of Crohn’s disease to come out on top.
I was 12 years old when I was diagnosed with Crohn’s disease. I remember the exhaustion, weight loss and hospital visits. The main thing I noticed was how different I was compared to my friends. None of them were having bad stomach pains or having to sleep so often. I remember how much smaller and weaker I was and how I was unable to properly grow or hit puberty because I wasn’t digesting or absorbing food properly. After the diagnosis, I was immediately put on a liquid diet for eight weeks. I was also given my first medication to take called Azathioprine. Azathioprine is a chemotherapy treatment used to suppress the immune system. This meant weekly blood tests to monitor my blood cells, mum slathering me in sunscreen because of my skin sensitivity, and avoiding any sickness and infection like the plague.
Despite this all going on, the worst thing I remember was not being able to eat cake on my thirteenth birthday. Apart from that, thankfully to my extremely supportive family, I was able to breeze through it.
Things were going well but halfway through Year 8, just after my fourteenth birthday, I developed rheumatoid arthritis in my knees. It became painful to walk and I had to use crutches to get around for three months. I ended up sleeping downstairs in our lounge room as walking up the stairs was too painful.
Due to my Crohn’s and my suppressed immune system, I also developed facial eczema which wouldn’t heal. My ears and nose would bleed and dry up and bleed again and it took almost a year of different creams and dermatology visits until we finally got on top of it. I was in a new school environment, so I found this hard to explain to people. Some would make comments about my nose always bleeding, but my friends were supportive and always had my back.
Eventually, I had to stop the Azathioprine as it wasn’t helping as much, and I was told I would have to go on the liquid diet again. I remember coming out of the hospital and crying. I felt so alone and I hated my illness.
The second round of the liquid diet was the hardest. In high school I was developing independence and hanging out with my friends more. Watching them eat while I couldn’t was hard. I started a new medication called humira. It involved a needle injection into my leg every fortnight. Before it was subsidised by the government the medication was $3,000 per needle. While my mum was becoming used to injecting me, some would squirt out of my leg and we would laugh at the fact a few drops was worth hundreds of dollars.
The most frustrating part of this disease is the fact it is invisible for the most part. People think I look healthy but there were some mornings where I couldn’t physically get out of bed.
On the eve of my high school graduation, an MRI showed that I had a stricture in my small bowel. My ulcers had built up scar tissue in my ilium and if left untreated it would block my bowel completely. Surgery was booked for a month later on the sixth of December. I was told that I may wake up with a stoma but at that moment I didn’t care, I just couldn’t wait to feel better. At this point I was 174cm weighing 45kgs. I had 30cm of my small bowel removed (my ileum) and the surgery was a success.
Recovering from the surgery was difficult. I woke up with a catheter in four separate scars on my abdomen. I couldn’t move without being in pain, and I wasn’t able to eat food until my bowels moved. I needed help showering, going to the toilet and was pushed around in a wheelchair because I couldn’t walk. I stayed in hospital for just over a week. After one day home I had to be rushed back in due to an infection around the joining of my bowel.
After a heavy dose of antibiotics, and another week in hospital, I was finally allowed home just before Christmas. The experience taught me how much my parents love me, and how they really will do anything for me (I wasn’t lying about the toilet and showering part). After a three-month long bout of antibiotics, I was finally on the mend.
Something many people don’t know is 90% of serotonin is made in the digestive tract. It is no surprise then that so many people with bowel diseases suffer with depression and anxiety, and I am one of them. I find the unpredictability of the disease hard to cope with. I don’t know what my future will be like and if it will include medications or surgeries. I don’t know if this is something I will pass onto my children. I panic when I get stomach pain and sometimes, I am so tired and unmotivated, I don’t want to get up.
Instead of being anxious about the future, try to focus on the present, and remind myself of how lucky I am to be alive.
My days are so much better now. I have colonoscopies every six months to a year, and I am doing great. I have been medication free since having surgery and I’m currently in remission. I work and am up earlier than most people, and I am so proud of myself for that. Of course, I still get tired for no reason, I still get sick, sometimes I’ll go to the bathroom ten times in a day. I have iron infusions and need vitamin B injections due to part of my ilium being removed, but my quality of life is the best it has ever been.
I’ve experienced some of the worst this disease has to offer, but I want people to know that it gets better. I owe everything to surgery and my beautiful family and friends that never left my side. I know it’s hard and I know that it can feel like you’re alone but you’re not. Don’t give up and don’t lose hope, better days are just around the corner.