Sienna’s story
Hi, I am Sienna. I’m 14 years old and I was diagnosed originally with Crohn’s disease in late June 2023. My mum has Crohn’s disease which suggests a genetic link.
It all started when I became a bit intolerant to milk drinks, and very greasy food like KFC. I would get a stomach ache, and be on the toilet within an hour with pain. This probably started when I was 10 or 11, but wasn’t too big a deal to me. It became worse when I was 12 and, when I was 13, the paediatrician wanted to follow up on some fatigue that I was feeling following my autism diagnosis, and checked my iron levels.
Your iron levels should sit around 75-100. Mine were 9.
Little did we know at the time, but this was caused by undiagnosed Crohn’s disease. I had malabsorption. Sadly, this was brushed off as being a woman, as I had started my period in December 2022. I was put on an iron tablet supplement and told to check my iron levels in the future. So all was good. Then, I experienced more abdominal pain. I thought I was constipated, but in reality, I had diarrhoea. My stools became more frequent, more liquid and a lot less frequent, so I thought it was constipation because solids weren’t coming. Mum got me a natural laxative, which didn’t work because it wasn’t constipation.
Later on, I discovered blood in my stools and when I wiped. I had passed this off though sadly because I got told by doctors when I was 4 that it was normal and it was just tearing of the anus. I told Mum 2 weeks later, she rushed me to the doctors. They weren’t too concerned even though Mum has Crohn’s disease. That was when I realised I wasn’t constipated. My doctor got me to do a stool sample and, weirdly enough, my faecal protection levels were normal, which they shouldn’t have been considering how much inflammation I had. I also had a blood test to re-check my iron levels, but my inflammatory levels were so high, they couldn’t see my iron levels. This was in April 2023.
In May, I went on school camp and got COVID-19, which affected my immune system. I lost my appetite and it never came back after that, I also lost weight but we connected this to the long-term effects of COVID-19. Again, it was an undiagnosed sympton of Crohn’s disease.
I was 40 kg when I should have weighed 50 kg for my height and age.
Exactly a month later, in mid June, I got the common cold. It was all fine and I recovered. I was ready to head back to school on the fourth day until suddenly, my sore throat worsened and I presented with SEVERE gastro symptoms, despite not having gastro. It was watery, and I was going 15 times a day. My stool sample was negative for all viruses. On day 6, we had to go to the Bendigo Health Emergency Department with very severe abdominal pain.
It was assumed I had appendicitis for some reason, and I was admitted to the children’s ward for treatment. I progressively got worse and CT scans showed severe swelling in the large intestine. They thought I had ulcerative colitis. I was very scared. I had a NG tube put in 4 days in and then transferred via ambulance to the Royal Children’s Hospital, where I now receive treatment.
Four days into my admission at the RCH, 29 June 2023, I was diagnosed with severe complex refractory Crohn’s disease. I was put on an EEN (exclusive entereal nutrition) diet for 8 weeks, which involved a supplement drink, 3 hard boiled lollies and some chewing gum.
Three weeks later though, they let me eat since I tolerated everything so well. Then, I was allowed to start infliximab, a biologic. I was discharged after a hard five weeks. Fortunately, the originally the plan would have been 10 weeks, so this came as a relief.
Three weeks later, I suffered C.diff, colon infection. I was also put on a drug called methotrexate, which made me very sick, and is also an immunosuppressant, so it essentially helped the C.diff come back. I was released 10 days later. My third admission was 5 days long, caused by a different immunosuppresant called azathioprine. A very rare side effect is that you can develop induced pancreatitis 3 weeks in. Sadly, this happened to me. I also had adrenal insuffiency caused by the steroid prednisolone, so was put on hydrocortisone.
My fourth admission was another Crohn’s flare – you guessed it, 3 weeks later. I was hospitalised 20 days. They did another set of scopes, to see that the six rounds of infliximab worked for the inflammation my small intestine and stomach, but my large intestine was still very inflamed. This led to me being diagnosed with IBD Unclassified, since I was very much on the cusp of both Crohn’s and UC. They put me on steroids again, then later tacrolimus, a drug for transplant patients, in hopes my body wouldn’t reject my own colon. This worked for some time, but only when my levels were dangerously high. I also suffered side effects such as neuropathy and shakiness. I started vedolizumab, which is a biologic that is slow working but good for colitis.
In February 2024, in the week leading up to my favourite artists concert like most teen girls my age, Taylor Swift, I felt unwell again. I was sleeping around 15 hours a day. I went to the concert after a rough day, felt good during the concert, then downhill. I went back to hospital, and had my vedolizumab infusion in hopes that would work. I did get better but two weeks or so into my admission, I became very, very sick. I was going to the bathroom 10 times a day with again severe pain. They put me on total parenteral nutrition (TPN) in the hopes it would stop the inflammation, and in case I needed surgery. A week later, they saw no change. They booked the surgery in for the removal of my colon, only leaving 15cm at the rectum.
When they took out my colon on March 15, they said it looked like ulcerative colitis. But when they looked at it under the microscope, they saw Crohn’s inflammation as well as Ulcerative Colitis inflammation. This means that when my stoma is removed, I face the risk of developing Crohn’s disease again in my small intestine. They will have to monitor me, and I will need regular scopes to make sure they can treat it quickly and put it into remission without losing more of my bowel.
I have improved so much since my surgery and haven’t had a stomach ache in many weeks. I hope to get back to school soon as I have missed out on a lot being so sick. Many missed opportunities and I hope to catch up on them, and more, soon.
This is my story, it’s not over yet.
Give me a follow on instagram at @thatgirlwithibd. Thank you.
