Overcoming Impossible

An unexpected turn

If you're battling chronic health issues, lost in the medical system, and losing hope, I've been there. As a teenager I dropped to 36kg and the medications and treatments just weren't working. My life looked truly grim... but now my passion is to help others find real solutions. To listen. To be your partner in this journey like I wish someone had been for me.

My health story started when I was 14 years old. Prior to then I was a normal, healthy child who could eat whatever I wanted and didn’t often get sick, but during year 8 at school my world suddenly got flipped upside down.

I experienced quite severe bullying and friendship trauma in year 8, which triggered such a deep, intense emotional response that I started getting physical symptoms. At first it was extreme fatigue which we later discovered was an almost non-existent iron level, then I developed constant upper GI symptoms of nausea, vomiting and heartburn everyday for over a month. During the course of 18 months my GP ran every test he could to try and determine what was wrong, but almost everything came up ‘fine’. It wasn’t until he referred me to a gastroenterologist who got me to do a gastroscopy and colonoscopy that I finally got some answers, although the outcome left me numb…

At 15 yrs old I was told I had mild inflammation in my large bowel which was Crohn’s disease. It’s an autoimmune condition that doctors both don’t know what causes it and don’t have a cure for. It could make me incredibly sick and I would most likely have surgeries in the future and be on medication for the rest of my life.

What are you supposed to say or think when you suddenly get news like this at only 15? My life was just starting, yet it felt like my future just got torn to pieces. I only realised many years later, but that was also the day my hope evapourated.

When help turns to harm.

We’re brought up being told to trust doctors and do whatever they recommend, as they know what’s best for our health, right? We don’t know any different, so we put out life in their hands. We don’t know to ask questions. We don’t realise how broken the medical system is. We don’t know what no one tells us. This is why I do what I do. To bring awareness that doctors are only human too, and we have to take responsibility for our own health.

Being interviewed by a news channel in 2013 when I was in a new section of the hospital and because I had a rare condition.

The gastroenterologist said I had to start treatment straight away, so I was put on a liquid ‘nutritional’ drink diet in which I had to live off Fortisip for 8 weeks and have no other food. The idea was to give my bowel total rest, but unfortunately it had the COMPLETE opposite effect. Fortisip is what gave me bowel symptoms (I previously didn’t have any before that) and sent me into my first ever Crohn’s flare. We kept ringing the doctor’s office explaining my deteriorating state, however they kept saying to push through as I would get better. We didn’t think to question them, so I carried on as best I could. After 2 weeks lost 8kg and had chronic vomiting and diarrhoea everyday. My mother rang the doctor to say that we had had enough and we were stopping the Fortisip drinks, as I had never been that sick before in my life. The doctor was in disbelief that I could have a negative reaction to the drinks, but given my condition, put me on prednisolone steroids to calm all the inflammation down. The reason for putting me on Foritisip in the first place was to try and avoid steroids. but they ended up being the very reason I needed them.

After I stopped Fortisip, we researched some of the ingredients and were horrified at what the scientific words meant. Three of the top five ingredients were a highly processed form of sugar, then there were emulsifiers, additives, artificial colours and flavours, vegetable oils, thickeners, etc. - all HIGHLY inflammatory. How on earth could they call these healthy?

Unfortunately since those two weeks my body has never been the same since. In the first 12 months that followed, I developed a perianal abscess, erythema nodosum which turned into pyoderma gangrenosum (gangrenous ulcers on both legs) and lost another 10kg. This was a snippet into when the next 10 years would hold.

By the time I was in year 12 I had the biggest flare I had ever had. The pyoderma ulcers came back with a vengeance on both legs, putting me in a wheelchair because they were so painful I couldn’t walk. The only thing that took the edge off the pain was IV morphine. My body was also going into shut-down mode, rejecting almost all food and drinks. My bowel was so inflamed, anything I tried to put into my body it reacted to. I got down to 36kg so was literally skin and bone. I was housebound because I was so sick and couldn’t walk more than a few steps without being in agony. This carried on for weeks, until finally my body started to settle. I ended up missing 10 weeks of school due to being so unwell. Even when I did return, I had to use a motorised scooter to get around school (like elderly people use), because walking any more than short distances would bring shooting pains in both legs where the ulcers were. It wasn’t until the following year that the last of the leg ulcers finally healed, 15 months after they first re-appeared.

I can’t explain the relief I felt when I could finally walk normally without pain, drive again and didn’t have to limit my life to short distances. However the scars from that season will always remain with me, both physically and emotionally. Pyoderma gangrenosum ulcers form in the middle of your leg and then penetrate every layer of tissue, so by the time they reach the skin every part of your leg is affected. When they heal, the scarring is extensive and permanent. I was extremely self conscious about the scars initially, but after a few years I leant to embrace them as my battle scars. They are a daily reminder of what I’ve overcome and can get through.

With the ulcers finally healed, 2016 brought about some relief. The next 2 years I plateaued with my health, so I was definitely better than I was, but I still had the occasional flare up and hospital trip. I also could not get over 45kg no matter what I did or ate.

Mid 2018 started the next season of health hurdles. I developed internal fistulas that were incredibly painful and needed surgical draining. Fistulas are wound tracts that form between 2 organs or to the skin. Mine were complicated and not easy to drain, so they required 6 surgical drainings over 2.5years. The fistulas also caused numerous bowel infections during this time.

By 2020 I could finally put the fistulas behind me as I had the last surgical draining, and I was really looking forward to FINALLY getting on with life. But unfortunately my body had other plans.

Pushed to breaking point

It’s amazing how much our body can go through and survive. We have no idea what we are capable of until we are forced beyond what we thought possible. I’ve never met anyone my age who has been through as much with their health as me, but I would also never wish that upon anyone.

In December 2020 I started getting very unwell, and by January 2021 I ended up in hospital. Unable to diagnose what was wrong, the doctors assumed it was a C.diff bowel infection, although only one of the markers for it came back positive. So they sent me home with antibiotics, as my symptoms improved enough to function while on them. But a month later I was extremely sick again and back in hospital. Doing some different tests, the doctors still couldn’t find anything else to cause the symptoms, so put it down to the bowel infection once again. A third time I went in and got the same story. By the fourth hospital visit in 4 months I went in and wasn’t going to leave until I got actual answers as to why I kept getting so sick. By this point I was having a lot of bowel pain and hadn’t opened my bowels in 24hrs which for me was unheard of. Previously they had refused to do a CT scan claiming it was too much radiation, but this time I insisted, as nothing else was giving me answers.

They finally agreed and a few hours later I was told the results. A doctor came to me looking slightly apologetic, saying that the CT scan showed I had a complete bowel obstruction and I would need emergency surgery in the next few hours. I would have to get a stoma and bag as my large bowel was in such a bad state they couldn’t cut out the obstruction and simply stitch my bowel back together, as the stitches wouldn’t hold and I would go septic. So suddenly in the early hours of the morning I had a rush of doctors and nurses coming into my room to prep me for surgery and put in extra IV lines.

After surgery I felt immediate relief. Obviously sore from surgery, but my bowel could finally rest for a while. However this was short lived, as my recovery was anything but straightforward.

Within a few days, my midline incision got infected and all the stitches had to be taken out. Later my bowel herniated and I started to develop the same pyoderma ulcer I had on my legs around my stoma. To add to that I also had an abscess form next to the stoma too. And as if this wasn’t enough, three days after surgery I was visited by a doctor I hadn’t seen before. She explained that it’s routine procedure to biopsy anything that comes out of the body during surgery, and to everyone’s surprise, when they biopsied my bowel obstruction it came back positive for stage II bowel cancer. I lay there in disbelief after hearing this news. Just when I thought my situation couldn’t get any worse, this happened. Thankfully my surrounding lymph nodes they removed came back clear, but they now needed to do more testing and scans to see if the cancer had spread anywhere else. Thankfully everything was negative and the cancer seemed to be contained to the bowel obstruction. Finally, a bit of good news.

All the complications meant I needed a second major surgery 2 months later to fix everything up. My bowel was stitched back in place, the abscess was drained, stoma was restitched and I had a new midline incision. Thankfully I didn’t get as many complications the second time, but the stomal pyoderma continued to deteriorate. As if the pain of recovering from 2 major surgeries wasn’t enough, the pyoderma made it 10x worse. My recovery was slow and hard. A few times I developed partial obstructions from where I had strictures - narrowings in my bowel. They at least didn’t need surgery to fix though.

The never-ending search for answers.

It’s extremely disheartening when nothing you do or try works as planned. Year after year, disappointment after disappointment, it pushes you to breaking point. The two things that kept me from completely breaking was the support of my mum and my faith in God. Without those two I don’t think I would be alive today. It’s a strong statement, but 100% true.

I continued to look for answers that might help my body heal, but nothing I tried seemed to help. The fistulas then returned in 2023 in a different part of my bowel. They were abdominal fistulas this time that surfaced next to my midline scar. I once again deteriorated as the year went on, meaning many more hospital trips. The doctors kept insisting I needed to have another colonoscopy to see what the exact state of my bowel was, and to biopsy for cancer cells due to my declining state. I eventually agreed (knowing it could make me feel even worse due to the prep and not eating beforehand) and it went ahead in October, seemingly without any issues. Then for the third time, tragedy struck…

Around 11pm the day of the colonoscopy I was suddenly in the most pain I’ve ever had in my life (which for me is saying something). I could barely move and was struggling to breathe. I managed to wake up my mother and said that she needed to call an ambulance. This was the first time we called an ambulance, as every other time of the 20+ hospital trips I would suck it up and grin and bear the 18min drive to the hospital from my house. But this time was different. I knew there was no way I could get myself into the car, let alone cope with the drive. In my mind there was only one explanation for what was happening, but I was desperately praying that I was wrong. Just this once I wanted my gut instinct to be wrong.

The ambulance thankfully didn’t take very long, and by that time I had already taken panadol, endone and tapentadol but with no relief. The paramedics gave me the green whistle while they tried to get a cannula in, but it took a few attempts because my blood pressure had dropped to 77 which made my veins hard to access (they can be tricky at the best of times). Eventually they got the cannula in and gave me 2 doses of IV morphine, but that still didn’t touch the pain. Struggling for breath due to the severity of pain, they loaded me into the ambulance and gave me ketamine. They told me the ketamine would make me not be fully with it as it sends you a bit loopy, but I wanted anything that might ease the pain. Thankfully the ketamine finally took the edge off the pain. I arrived at hospital where they ordered a CT scan. While waiting, some of the initial pain killers were starting to wear off so they gave me the only thing I hadn’t had yet, which was a fentanyl injection. After a few hours, I finally had the results and I was devastated.

As I feared, I had a bowel perforation from the colonoscopy and was going septic. My heart shattered as my surgeon explained that I would have to lose 90% of my large bowel and have a new stoma with the end of my small bowel.

I knew I had to have the surgery as I would die otherwise, but this was the ONE thing I had been trying to avoid above all else the past 12 years.

CRP is the main inflammation marker doctors test.

Normal range is less than 6.

I was the one who kept refusing surgery prior to this, knowing that it both wouldn’t cure me and once you get your bowel surgically removed, it can’t grow back. I had always been determined that I would keep searching for ways to save my large bowel no matter how long it took. But now, that choice was suddenly ripped away from me.

I didn’t get time to process the severity of what was happening, as not long later I was taken to surgery. Hours later I woke up and now had to face the reality of the last 24 hours.

Pain into purpose

When we go through excruciating circumstances we have the choice to get bitter or better. Our mindset plays a HUGE role in our recovery and can determine if we actually get fully well. Throughout my journey I have made a habit of being thankful. No matter how dire the situation, I stop to reflect and find something to be thankful for. The situation doesn’t change, but my mindset does. I also give my pain a purpose. I use what I’ve been through to help others and have empathy when they are struggling. Our pain can either define us or drive us forward.

For the first time since I could remember, I was finally without pain and my body had peace. It was a surreal experience given what I had just been through. My surgeon gave me very comprehensive pain relief so I didn’t feel any of the surgical pain yet.

It was like a switch suddenly changed in my body. For the first time ever my recovery went really well and everything healed like it was supposed to. Never before had I recovered that quickly and that well. NEVER. My body went from strength to strength and within a few days I was walking around the hospital ward with the help of a walker. I can’t put into words what it was like to just feel well.

Although there were times in the previous 12 years when I was feeling better than others, there were always mild symptoms I was experiencing. I had never had a complete break until then. All of a sudden I started to be able to do things that I had longed to do for so many years. Finally I was getting my life back.

During that ordeal I got down to my lowest weight ever of 35kg, but within two months I gained over 20kg and got back to my normal weight, which I hadn’t been able to achieve in over 9 years. For the first time in my adult life I felt and looked my age, which particularly as a female was incredible.

In the follow up appointment with my surgeon 3 months after the surgery, he mentioned that when he removed my large bowel it was one of, if not the worst bowel he had ever seen - and he’s been a colorectal surgeon for many years. While this was hard to hear, it also gave me closure as to why NOTHING I had tried, whether medical or natural, seemed to make a significant difference for my health. My surgeon said I had pyoderma-like ulcers all throughout the inside of my bowel, and it was so inflamed it essentially wasn’t functioning. The reality is, my large bowel was too far gone. I think I was only able to handle this news because it had already been removed and I was now doing so well.

It’s certainly been a challenge trying to process this last season. Particularly as it came without any warning and completely turned my life upside down from where I was. I’m incredibly thankful for where I am now, but it came at a huge price. My goal is to help others so that they never end up in the same situation. Having to lose part of themselves in order to get well - both physically and/or emotionally.

The journey’s not over yet, as I’m planning to have bowel reconnective surgery in the near future to reverse my stoma and connect my small bowel to the 18cm of large bowel that I have left. After that I will finally be able to put this health chapter behind me.

Through it all I determined that no matter how many times I got knocked down, I would not be defeated.