The strength to see life differently – Breanna’s story
I was diagnosed with Ulcerative Colitis (UC) at beginning of 2021. I was 18 at the time and had no idea what UC was, and had to teach myself how to deal with a chronic illness.
Ever since I was a bit younger, I always had “IBS” symptoms. I experienced mild symptoms my whole life with pain, blood in my stool and ‘food intolerances’. When I was diagnosed I was going to the toilet around 10 times a day with large amounts of blood in my stool. As a young person this was horrifying. I was initially told I had severe IBS, but when i saw a specialist and underwent a colonoscopy, they found signs and symptoms of Ulcerative Colitis. In 2023, I had a really long hospital admission. I’ve had a number of stays in hospital, but this one was for a month and a half. During that time, I had another colonoscopy, and they changed my diagnosis to Crohn’s disease.
I started on Asacol and 50mg of prednisone (the devil drug). I began to feel better, but as I weaned off prednisone, my symptoms continued. I then went on Purinethol which made me constantly vomit. I began Humira which worked for me for about two months before my symptoms got worse. I had mucus, pus and blood in my stool, and was going to the toilet around 15 times a day. I went into hospital and was on IV hydrocortisone for a few days to settle my symptoms. The hospital then discharged me with 60mg of prednisone. The next morning I woke up with severe pain and went back to hospital. Little did I know I would be in there for a month. I had IV hydrocortisone again and two Remicade infusions which didn’t work. This was a scary time as, by this point, I had tried many drugs and was coming to the end of drug options. The doctors began to speak about having a stoma and then a J pouch. At this time I was a 21 year old girl who thought my life was over.
It was so hard for me and my family to process this information. Then my team of doctors mentioned RINVOQ. They told me that RINVOQ would have a 50 per cent chance of working and it usually would take eight weeks to reach remission. I had taken five months off work and university (studying a Bachelor of Social Work) as I physically didn’t have the strength or was well enough to work or study. I went into hospital weighting 60KG and got discharged at 45KGs. Now, I am over six months out of hospital. I haven’t reached remission however I am well enough to use RINVOQ as a maintenance drug for now. During my last colonoscopy and endoscopy, the doctors found many lesions in my stomach and small intestines. As a young girl this was, and still is so hard to process. Having a chronic illness at such a young age is so scary along with the symptoms that come with it
Through my hospital admissions, the specialty team of doctors working with me were helpful. They were supportive, and they understood what was happening to my body. In terms of dietitian support, I found that the advice didn’t align with me and my body at times. For instance, they would give me a list of foods, and I knew there were things on there that I couldn’t eat. On the psychological side of things, being quite unwell last year, it did impact my mental health quite badly. I had quite severe depression and lots of anxiety. I feel like the team helped me to process everything that had happened.
I don’t know anyone personally with Crohn’s disease or Colitis. I’m in a few Facebook groups for Crohn’s and Colitis which has been helpful. Just to read what people are saying and to validate what my symptoms are, and that what I’m feeling is normal. In saying that, I think it would be good to talk to other people who are going through the same thing.
Before I was diagnosed, I never thought that my health would have such a big impact on my life and the day-to-day decisions I make. Having Crohn’s disease has changed the way that I live and the way that I treat my body. As an example, I go to bed earlier because I know — if I don’t — I’m going to be tired the next day, and that will affect my well-being. I feel like the diagnosis and what I’ve been through has also given me more strength because my health can really change at any time, and at any moment. I am grateful for the good days that I have and hope during the bad times that things will get better.
There is always light at the end of the tunnel and at some point in our lives we will reach it. We never know what people are going through, and there are so many hidden disabilities and Illnesses that are hard to talk about.
It is so important to spread awareness and share our stories to break that silence.