I was admitted to hospital by my doctor after explaining that I was visiting the toilet 10-15 times per day with bleeding. I had a flexible sigmoidoscopy that revealed 20cm of inflammation in my large intestine. The consultant happily handed me 40mg of daily Prednisolone, and told me that this medication would be the answer to all my worries. Unfortunately, this was not the case. After 2 weeks of taking this high dose of steroids, my bleeding had gotten worse, and I’d lost so much weight and was so anaemic that I was almost unable to walk as my worried Dad took me to hospital again. I was immediately re-admitted and put on intravenous steroids. Much like the oral version, this also had no effect on my disease. It seemed I was resistant to steroids entirely.
2 CT scans, 4 x-rays, and a second flexi-sig later, as a last ditch attempt to control the disease, I was approved to try the biologic Infliximab. I had my first dose under the watchful eye of a wonderful nurse at 10pm, and things started to look up. My toilet frequency decreased, and I was sent home with a second loading dose appointment in 2 weeks. During those 2 weeks, I sadly declined in health again, until I returned to the hospital for a third time. The second dose of Infliximab was given to me, but 5 minutes into the infusion, I had a severe allergic reaction to it. The infusion was stopped, and the surgeon who would end up creating my ileostomy came in to talk to me, as I’d reached the end of my treatment options. I was having surgery in 3 days as an urgent, semi-emergency case, to avoid my disintegrating bowel from perforating and causing sepsis.
This was on the 19th of August 2016. I had lost weight from 55kg to 41kg, and had two blood transfusions. I was unable to walk further than to the toilet and back, and I was on TPN (food into my veins) because I hadn’t eaten a full meal since I’d arrived in hospital in July.
I was terrified. Why me? At 22 years old?! Surgery had always been the very last resort – as far as I was concerned at the time, it was life ending. I imagined I would smell, be unable to wear anything but pyjamas, that my boyfriend would leave me and I would be disgusted with myself for the rest of my life. I remember lying in bed, hand on my stomach where the stoma nurse had marked where my stoma would be sited, crying.
However, my wonderful parents, my boyfriend, and all of my amazing colleagues and friends assured me otherwise with messages of love and support. I joined a couple of Ostomy Facebook groups, and felt less alone already. The night before surgery, I decided I was going to name my stoma Squishy, and love him, and myself, no matter what. The next morning I went into surgery with my incredible mum beside me right until I went under the anaesthetic.
When I woke up from a seven hour long surgery, I was acutely aware of being very hot, and very thirsty! I wasn’t actually in that much pain, as I had requested strong relief and a Fentanyl pain pump button was pressed into my hand, which I gratefully mashed several times! I slowly came around and was taken into intensive care initially, then moved to high dependency. Everyone was excited, because Squishy had started working only a couple of hours after surgery! Finally, some good news! The next day, I took a photo of myself doing thumbs up so everyone knew it had gone well.
The first time I saw Squishy was when the stoma nurse came to change my bag for the first time. She removed the bag, and a swell of emotions rushed to the surface. “Hello Squishy!” I laughed, nervously. As it turned out, Squishy and I got along rather famously. I recovered for 11 days in hospital before I had the strength to go and recover for another 6 weeks at my parents’ house. I had a largely problem-free recovery period, and I received the best care from my caring parents, who are both absolutely incredible. My appetite returned with great gusto – I remember my first Indian takeaway – it was absolute HEAVEN to enjoy a decent korma and naan bread again! Squishy handled everything like a pro.