Hi all! My name is Georgia; I am 20 years old and I have a permanent ileostomy.
My final year of secondary school was not like my friends. At the start of Year 13, aged just 17 years old, I began experiencing significant rectal bleeding and was passing mucus. I was constantly tired, and I remember struggling to walk up the stairs at school. I went to the GP in the October of that year, had some blood tests and was referred to a gastroenterology consultant at my local hospital. The GP suspected I had Inflammatory Bowel Disease (and she was right)! At the time, this wasn’t my top concern. I was juggling writing my personal statement, practising for admissions tests and preparing for interviews to get into my dream university. All the while my health took a downward turn. I saw the consultant in December, and a flexible sigmoidoscopy booked for January 2018.
The week after I found out I got into the university of my dreams, I was diagnosed with indeterminate colitis (now more commonly referred to as inflammatory bowel disease unclassified) at the age of 18. At the time my inflammation was mild; I was prescribed with Octasa (mesalazine) which quickly cleared up my symptoms. But, I was still very anaemic from the prolonged blood loss and became quite ill with the flu. I developed ulcers on my epiglottis (one of the worst pains I have EVER felt) and lost a lot of weight in a matter of days. My liver function was abnormal, so I was told by my doctor to come off the Octasa. This is when I experienced my first bad flare up. Just months before my A-Level exams, I could only muster the energy to move from my bed to go to the toilet where blood poured out of me. My haemoglobin dropped significantly (to 68g/L), I had fevers, and could barely stomach any food. I went back on Octasa, but I still felt utterly rubbish. My IBD nurse prescribed an 8-week course of Prednisolone and booked three iron infusions for me. The Octasa along with the steroids eventually put me into remission which lasted me through the summer. I still experienced significant fatigue and never went back to school full-time, but I somehow managed to get the grades I needed to get into university. Perhaps the steroids waking me up at 5am helped me cram as much revision as possible…
I had had a great summer, but unfortunately remission did not last long. A week or so before I headed off to university, I began to experience rectal bleeding again. I was gutted. I doubled my dose of Octasa and picked up a 4-week course of steroids in Freshers’ week, praying they would clear my symptoms. Sadly, they did not. I was waking up several times in the night to pass significant amounts of blood and this got worse day-by-day. Catching ‘Freshers flu’ didn’t help how I felt, and after only 2 weeks at university I was completely wiped out. I went to a big Freshers’ ball on a Saturday night (with an open bar!) but spent all of it feeling pretty awful, taking multiple trips to the toilet to pass blood. The next day I knew I made a mistake exerting my energy the night before. I was tachycardic, had a fever and was eternally grateful I had an en-suite…
I booked an emergency GP appointment, was sent to A&E and admitted to hospital. My CRP was around 100 and I was swiftly put on a course of IV steroids, enemas, antibiotics and I even went on a drug trial. I spent just over a week in hospital and was discharged with a cocktail of medication: Octasa, Prednisolone, Azathioprine and those lovely chewy calcium tablets. I also had an infusion of Infliximab and I left hospital with the hope that this would kick in, but it did not. I don’t remember much of the week between when I got discharged and when I was readmitted on Halloween; I just remember coming to the realisation that I would most probably end up having surgery. During my second admission, I had a double dose of infliximab, two blood transfusions and an iron infusion. My arms were covered in bruises from the endless cannulas and blood tests. I felt sleep deprived and just awfully sick. I had a bad fever that gave me hallucinations and I was utterly terrified about bowel perforation. I remember the feeling of relief when the consultant ordered an X-Ray to check whether I had toxic megacolon. My colon luckily never got to that stage, but I still needed emergency surgery as the medication simply was not working and my CRP was high. On Bonfire Night, my consultant confirmed that I would be having a sub-total colectomy within 48 hours. I had been really stubborn about my mum coming to visit me before this: I had just moved to university and wanted to be as ‘independent’ as possible. But I needed her now more than ever, and she ended up staying in the hospital hotel for over a week to be with me throughout my recovery.
I won’t lie, the time I spent in hospital was really traumatic. I was four hours away from home and I felt very isolated. I am incredibly grateful to the friends who sent cards or came to visit me; I was in a room by myself and only had the people who came to take my observations to talk to. I was so drained, and I remember not really caring if I woke up from the surgery or not. At least the pain would’ve stopped.
The initial recovery was really rough. I was in so much pain the day after surgery I couldn’t speak, I could only cry, and my drainage bag consistently leaked so I was essentially soaked in my own blood. Despite this, I still felt better overall than before my surgery! At least I knew I was on the road to recovery. I became very sick from an ileus a few days after surgery, which was excruciatingly painful. Whilst the vast majority of my friends were out making memories and enjoying their first term of university with plenty of vodka shots, I was taking shots of morphine. Having an ostomy didn’t faze me; what did affect me was the fact that I had to take a year out of university to recover. It really hurt seeing everyone else going on nights out, going to events and experiencing what I wanted to experience but couldn’t because of my chronic illness.
I had a very productive gap year! I am happy with what I got done and the work experience I gained. Although it was very difficult to leave university for a year, in hindsight it was an essential part of my recovery. I ended up needing a proctectomy in July 2019 because of my annoying rectum which wouldn’t stop bleeding, but that’s another post altogether… Now I am back at university and very grateful for the medical professionals who gave me my life back.
Follow Georgia’s stoma life and being back partying her way through university below: