My Story Living with ulcerative colitis
Written by Isabella Hantas
My name is Isabella Hantas! I am 20 years old and have recently been diagnosed with ulcerative colitis.
I first became symptomatic between 2019-2020. The immediate eye-catching difference was blood in my stools. But my naïve younger self dismissed it as something subtle, something that will surely pass with time. However, as time itself went on, so did the progression of my UC.
My symptoms became far more obvious and questionable. I thought to myself, “is this really normal?”. Having known or heard nothing regarding my display of symptoms, I began to worry and think, what could this possibly be?
After frequent google searches and far too many unanswered curiosities, roughly a year ago I had finally decided to visit my doctor and explain my situation. It was then I was initially suspected of having Crohn’s disease. That was the first time I had ever heard of IBD – I wondered to myself how I hadn’t heard of such a disease before, how it hadn’t been more discussed within society. I thought, perhaps if it had, I would have felt more comfortable seeking help for my issues. But there is no point fretting about the past when I can take action in the future.
I was recommended multiple laxatives to try and ease my constipation (one of the more persistent side effects of my UC), which unfortunately were rather in-effective.
May 2021 – Some months later, with no laxatives effective and the blood in my stools worsening, I visited the emergency room, hoping for some answers. It was a great disappointment that the doctor was quick to assume it as being purely anal fissures and haemorrhoids. He simply recommended a different laxative and sent me off. I won’t sugar coat things, I was upset, disappointed. And it’s genuinely so disheartening that many doctors are so persistent to assume it’s anything BUT IBD. I was let down.
It wasn’t until October 2021 when things really started to become more obvious to me that this was a problem. I had begun to notice large amounts of mucus and blood in the toilet bowl. I can still recall the growing anxiety I felt with that very night. Another trip to the doctors!
With my symptoms not improving, I had been put on a waiting list for a colonoscopy and gastroscopy at the hospital. I was also required to take some blood tests and a stool sample. As my symptoms weren’t severe at the time, I was expected to be waiting some time for the colonoscopy/gastroscopy. But there was a sense of ease, knowing that an answer was near.
Fast forward a couple months…January 2022! I was experiencing what I can recall being my most painful flare up. With no diagnosis at this stage and no evidential signs as to what exactly it could be, I visited the emergency department at the hospital a second time. I was experiencing pain near my appendix which would hurt and would cause incredible discomfort if I were to sneeze, cough, move or stretch in certain ways. I was convinced I had an inflamed appendix.
After seeing the doctor and explaining my situation, they did acknowledge that my symptoms did sound like an inflamed appendix, however people experiencing such generally display greater signs of pain, and I seemed mostly fine. Then the question was asked “Do you have any other ongoing issues?” Then the clogs start turning! I begin discussing my situation and how I’m waiting for a colonoscopy at the hospital to get some answers about my suspected Crohn’s disease. The doctor showed great care and was truly so supportive, I couldn’t be more thankful for the consideration that was given to me that day.
Shortly after the hospital visit, I went to the pathologist to do some blood tests and received my first ever stool sample to complete. Once the results were sent to my doctor, I was called and told to book an appointment urgently. I wasn’t sure what I was expecting. The blood test results weren’t the issue. It was the stool sample.
In my stool sample they found that my faecal calprotectin levels (which to my understanding indicate the level of inflammation on your bowel/stools) was detected at over 4000. My doctor explained that people with as high as levels of 250 are considered concerning. I was stunned. I remember looking out the doctor’s window, gazing at the traffic passing, my head was completely empty, until I heard the doctor say something like, “you’re putting on a really brave face.”
I remember being confused. I wasn’t being brave at all. I had no idea what to think, because I had such a lack of understanding of everything that was happening to me, I genuinely was clueless how to react. But at the exact same time, a deep pit of worry and concern was brewing in my chest. Something was wrong. Given the results, my colonoscopy was then re-faxed as urgent. And I was expected to have my colonoscopy within the next 3 months at the latest.
Two months later…March 2022! It was the month of my colonoscopy! After what felt like an eternity of seeking answers, the time had finally come. On the day of my colonoscopy, I cannot begin to explain the amount of anxiety I was experiencing. It was my first time at the hospital, it was all new and very strange. The uneasy atmosphere crawled through my skin. But knowing that my everlasting desire for answers was so close was enough to ease all worries!
On that day, I was officially diagnosed with ulcerative colitis. I will never forget waking up after the procedure, still feeling quite weary and half-awake from the anaesthetic, when the doctor rushed in and told me my diagnosis. Two areas of inflammation had been detected, the bottom 5cm of my rectum, and a slight patch near my appendix within my colon, which would most certainly explain my visit to the emergency department.
Currently, I have trialed 2 courses of steroids and anti-inflammatories which have given absolutely no long-lasting effects. The sights I see in the toilet bowl really look as if I’m not taking medication at all. Nonetheless, I am soon to try medication number 3, in high hopes of going into remission. I am still symptomatic, and with each day learning more about this disease and how it affects me personally. But it doesn’t change my outlook on life and my eagerness to hope that I will one day be symptom free!
Thank you so much for reading my story! My heart goes out to everyone going through the struggles of IBD, suspected or diagnosed. It’s fascinating to hear everyone’s story, it’s so interesting to know how everyone and every body (literally) is affected by this disease. And please, if you’re feeling how I used to, and displaying some not so nice bowel related symptoms – don’t be embarrassed, don’t be scared, there will always be an answer and the support you need out there for you!