Growing up I always saw myself as the “sick kid”. I was diagnosed with Asthma at 18 months old and every year until I was about 11 years old, I spent weeks in hospital. I remember going through school with this stigma that I’d labelled myself with and how much it affected me. My asthma eventually settled, and I felt like I was again in control of my body. I no longer considered myself as the ‘sick kid’. It wasn’t until I started experiencing gastrointestinal symptoms from around the age of 20 (however I wouldn’t be formally diagnosed with Ulcerative Colitis until 8 years later) that again, I would be tainted with the “sick kid” stigma.
I never thought much of it as the symptoms would come on randomly and then wouldn’t occur again for months. This went on for years and during that time I saw many different GPs trying to find some answers. The replies were common, it was always “change your diet” or “you have IBS, so take this supplement”. Once, I even remember being told I just had a lazy bowel (what does that mean and how is this even a diagnosis?????). I got to the point where I even started to doubt myself and began hiding my symptoms even from my family because I thought they wouldn’t believe me.
This is the worst part of living with an invisible illness. Not only are the symptoms you experience invisible, you begin to feel invisible yourself when not even medical professionals will listen to you. The problem with seeing all these doctors and never really getting an answer, was that I began to ignore the symptoms as I believed it wasn’t something to worry about. I did everything the doctors suggested and yet nothing improved, in fact over time it only got worse. I felt so alone, I knew what I was experiencing wasn’t normal, however when I spoke to health professionals about it, they didn’t seem too concerned. This left me feeling crazy and I questioned myself and what I was experiencing. It made me believe that perhaps my gut health wasn’t as bad as I thought.
I believe part of the problem with me getting a diagnosis was that my initial symptoms weren’t how most Ulcerative Colitis cases start out. I had the opposite in fact, I would go weeks at a time without being able to go to the toilet. It wasn’t until 2020 when my symptoms began to really impact my day-to-day life. I found myself having more days off work sick than I had my whole working life.
I eventually had enough and tried out a new GP. This doctor was immediately concerned with the symptoms I presented with and sent me for urgent tests. One being the Calprotectin test which measures the level of inflammation in your bowel. A normal reading should sit under 200 and mine came back at over 900. The following day I was in a specialist Gastroenterologists office, all organised by my new GP as she was so concerned with the results, and within a week I had my first colonoscopy. As a result, I was finally given an official diagnosis of Ulcerative Colitis.
At first it was the biggest relief, finally this silent illness I’d been battling had a name. Unfortunately, though even after diagnosis I wasn’t provided with much information, just that it was a part of a group called inflammatory bowel disease. I was so naive after the initial diagnosis. I thought ‘ok great, now we know what it is, I’ll be given some medication for it and I’ll be right again’.
Boy was I wrong.
To say the last 3 years since diagnosis have been a rollercoaster ride would be a gross understatement.
We started with the usual medications, we tried them in every form- tablets, suppositories and enemas. When all these failed we tried courses of steroids. Although these worked for a while, I found they masked the symptoms and once off them, the terrible symptoms would return. One night it all got too much, I hadn’t been to the toilet in over a week, I was in so much pain and incredibly uncomfortable. The decision was made to go to hospital.
I remember being so nervous thinking that the triage nurses would think I was overreacting and wasting their time. I was pleasantly surprised at their display of empathy and understanding, something I had yet to have experienced with having this illness. More scopes, tests and steroids later, I was sent home after three days with another different medication which seemed to work for a while at least.
Fast forward to January 2021 and my symptoms had progressed far beyond what I ever could have imagined. I was rushing to the bathroom over 20 times a day and each time passing copious amounts of blood. I couldn’t keep going like this, so off I went to hospital again. After fainting on my poor mum in the waiting room due to my Hemoglobin or HB level being so low, I was admitted and immediately given two blood transfusions. Again I started another medication and I was sent home, however after only two days I had to return due to a severe reaction to this medication. I remember at this point thinking how I had never in my life been this sick. If only I knew what was to come.
I was admitted again and I didn’t leave for another 8 days. This time it was decided I would start biologic treatment called Infliximab. To my complete joy, this one seemed to work really well. I started to see the light at the end of the tunnel of this very debilitating disease.
This was short lived however, as soon I required approval for ongoing treatment of this new medication. Unfortunately this process took longer than expected and in that time my symptoms started to reappear. Eventually I started again on the same treatment, but this time around it wasn’t working how it did before and I started to become very unwell again. I was put on another course of steroids to assist the biologic, however again this just seemed to mask the symptoms.
At this point I started to feel completely helpless. Nothing we tried was working and I was feeling incredibly disheartened with it all. I had a friend of mine begin working for a gastroenterologist (GI) and in my desperation I asked if I could get a referral to this specialist for a second opinion. Unfortunately this GI didn’t work with Colitis patients but instead they recommended a fellow GI.
I remember my first appointment with this new GI, I was ready to be told everything I’d already heard numerous times before and sent home with another script. This couldn’t be further from my experience. The new specialist was so kind and sympathetic. It was as though he truly understood exactly what I was going through. I left the appointment that day feeling so positive. I just knew that no matter what he was going to do, he could help me. At this point I had exhausted a lot of medication options already and he had told me we still had multiple to try before even thinking about surgery.
Surgery! This was the first time this had been brought up and explained to me. I remember doing some research about Colectomy/Ileostomy surgeries and being so overwhelmed with it all, that I just closed my browser and decided to not think about it. At that point in time I still had many other treatment options to explore.
He began by starting me on a new biologic called Vedolizumab and every 4 weeks I went in to receive this infusion. I wish I could say this was my miracle drug but unfortunately it became just another one that failed.
By this point the Ulcerative Colitis was really taking hold. I was going to the bathroom almost 20 times a day passing blood every time, I was barely able to sleep as I was waking up all through the night having to rush to the toilet, I had chronic pain, fatigue and everyday tasks became almost impossible. I was still working full time at this point as well as teaching Pilates on the side. Battling this disease everyday wasn’t easy and at some point something had to give. One morning, whilst at work and after several terrible weeks of my Colitis symptoms, I just couldn’t do it anymore. I decided it was time to go to my local hospital again.
I had a sigmoidoscopy prior to this hospital admission and it showed severe inflammation in my colon with up to 20cm of disease. The hospital liaised with my GI the entire time and I was started on another medication called Tacrolimus, first in enema form and then I was given suppositories and sent home to continue treatment. This medication only seemed to aggravate the Colitis more. I was losing what felt like litres of blood everyday and getting weaker and weaker. Three days later I had a follow up appointment with my GI. After barely making it out of the house without fainting that morning, I went to his office. He took one look at me and asked me to go across to the hospital, where he’d have a bed waiting for me. This way I could be at the hospital he worked in and directly under his care.
I never imagined at this point that when I walked through the doors at RPA that I wouldn’t be walking out again until five weeks later. Over the course of the five weeks; I had multiple scans, scopes and tests. The first medication we tried was Cyclosporine and was delivered intravenously through a drip over the course of six days. Some days we’d see improvement and I held onto that. I was then moved onto the tablet form soon after. Again we had days where my levels would improve but all round it still wasn’t enough.
The topic of surgery started to get brought up more often during this time, and I remember still being terrified at the thought of it. I didn’t want to think about that yet, I just wanted to focus on what we were trying currently. After about three and a half weeks it was decided that this medication wasn’t working and so the search for another one began. I was quickly running out of options but I knew if there was still something worth trying my GI would find it and so he did.
I was given a high dose of a drug called Tofacitinib, normally used to treat rheumatoid arthritis. There was a high risk of blood clots with using this medication so I was also given daily injections of Clexane a blood thinner. Everyday we began to see small improvements in my levels. It was looking positive and on the 23rd of December, I was stable enough to be sent home and got to enjoy Christmas with my family and friends.
After being released from hospital, I felt immense pressure for this medication to work. My family, specifically my mum and fiancé; never let me go a day whilst at RPA without a visit. They rode every high and low with me and I wanted to fight with everything I had for this medication to work and to end the suffering this inadvertently put them through. But all the while I was telling everyone that I was feeling better and thought this medication was working, deep down I knew it wasn’t doing enough.
I had a follow up appointment with my GI in February of this year and he confirmed what I already knew. It hadn’t worked. We hadn’t given up though and he sent me off for another calprotectin test to see where it was at, before we made the next decision. Just over a week later my GP rang me with the results, it wasn’t good. My calprotectin level was sitting above 4000 (extremely beyond the normal level of under 200).
Within 2 weeks, my symptoms seemed to somehow get even worse. I was in incredible pain and was unable to eat anything other than a boiled egg a day. This could only go on for so long and soon enough I found myself back in RPA hospital. More tests and more scopes all saying the same thing, inflammation and a lot of it. My colon was in terrible shape and so was I.
The 2 months prior to my admission in February I had been researching everything possible about the colectomy with ileostomy surgery, so mentally I was prepared for whatever outcome. At this point I just wanted all the pain and suffering I had endured to end.
I’m sure not everyone feels this way, but when I was told that surgery was really our only option left, I felt nothing but relief. It felt like the light at the end of my tunnel and preparation began for surgery. I met my Colorectal surgeon; who just like my GI gave me the utmost confidence in what we were about to do. I quite literally trusted both of my doctors with my life and I’m so glad I did.
The week leading up to my surgery was actually the most sick I had ever been in my life. I had dropped down to 52 kg and looked like I could join the cast of ’The Walking Dead’. In all seriousness, I truly think it was one of the first times I realised just how sick I had been over the years and just how serious this disease really was. My body was slowly dying from this disease and that scared me more than any surgery.
On Thursday 4th of March it was time for surgery. I woke up that morning with a strange calmness, I knew that my cure was on the other side of this surgery and finally I had a chance of getting my life back. It no longer scared me like it once had. If I could survive what I had been through with my Colitis, then this new way of living would be a walk in the park. After the surgery, I woke up in recovery in immense pain, with it so bad that I couldn’t even speak. All I could do was nod to the nurses when they asked if I needed more pain relief. In that moment however, I felt this amazing weight had been lifted off my shoulders, finally we had beaten this cruel disease. We had won!
I won’t sugarcoat the recovery, as it was really hard at times but I knew it was only temporary unlike what I was dealing with before. Over 3 months later I couldn’t have imagined how much this surgery would change my life for the better. Ulcerative Colitis took everything away from me, I fell out of love with life and lost myself in the battle but my stoma has given me all that back and more. I feel nothing but love and gratitude towards my stoma now; and am a little embarrassed that I ever thought I wouldn’t be able to handle this way of life.
It’s certainly been an adjustment, but compared to what I had to deal with before, this is a walk in the park. Previously I would have to plan where a toilet was along my entire journey, always have a spare set of clothes with me and a lot of times avoid going out at all, just so I could be in the comfort of my own home.
My stoma has given me this new sense of freedom and confidence I never imagined it would. I know body image is a huge concern when people are looking down the path of this surgery but honestly I have more confidence now then I did prior. My stoma gave me life. Everyday I’m amazed at how I can now live, which was all made possible from my wonderful team of health professionals.
I think it’s crucial to have trust and faith in your medical team because I know my decision to go ahead with the surgery was made easier by having them around me. I also can’t forget the unwavering support from my family and friends. Having this surgery isn’t an easy thing to do, however when you’re as unwell as I was it makes it easier. Also having a support network around you that you can lean on is one of the most important tools you need to get through it.
I still think about all the times during some of my worst flares where the pain and symptoms were so bad, I just wanted it all to end. I didn’t think I could survive it anymore. Those days were awful and had a profound impact on my mental health. They gave me some of my darkest moments, but also gave me a strength I never knew I had and never knew I would need until I underwent this surgery.
In the past three years even though I have had some incredible times such as getting engaged, I always felt this black cloud hanging over me that was my Ulcerative Colitis. I was never fully able to enjoy any moment as I was always anxious about what could go wrong. Yet now after receiving my stoma I feel like it has completely changed my outlook. I not only look forward to the future now but I find so much joy in the simplest things in my day, I see the beauty in the little moments and that’s something I missed out on for so long.
My experience with Ulcerative Colitis was not a good one, it can be such a cruel disease. It attacks without warning and still no one knows why. I hope from my own suffering with this disease I can bring awareness to it so that maybe there will be a future where a cure exists.
I understand not everyone will have my experience and outlook regarding stomas and that’s ok. I believe it is totally an individual thing in how you deal with it. My goal after diagnosis was always to first get healthy, and more importantly to live. My stoma has made that possible for me when nothing else could and I will forever be grateful for it.