I had an abscess the size of a melon on my intestine, and was fitted with a colostomy bag at 22. This is what it’s really like living with Crohn’s disease

Seven months later I returned home, now weighing under seven stone. It was clear to see that my health was rapidly deteriorating. I was going to the toilet up to ten times a day and was bent over double after eating anything at all. It was a struggle to even stand up straight. After going for a scan, I was soon diagnosed with a second abscess. Doctors tried various ways of draining the abscess without invasive surgery, which consisted of a tube being inserted through an incision in my stomach while I was awake. The pain of the procedure had me howling like an animal despite a local anaesthetic.

It was soon clear that I had little choice but to agree to a second operation to have the infected part of my intestine isolated and removed. I would have to wait eight weeks before they could operate – the longest two months of my life. In that time, I was given the notoriously addictive pain medication Oxycontin to take as and when I needed it. I quickly became very reliant on the pills which I would take all day with very little supervision.

My boyfriend (now husband) Jerome and I had recently started seeing each other. But the worse I got, the harder I found it to confide in him. I struggled to communicate the emotional and bodily trauma I was enduring, while my friends were all getting on with their lives. Vulnerable and needy, I hated the person I was becoming. Once headstrong and fiercely independent, the dynamics of our relationship seemed foreign to me. I felt emotionally abandoned, and the looming operation filled me with dread.

Jerome’s face was the first I saw when I came around from the anaesthetic. His piercing brown eyes looking down at me, I knew something had gone wrong. My abscess had been the size of a melon so there was no way they could have completed the operation as planned because my intestine wall was too fragile to be stitched back together and would just disintegrate all over again. He broke the news: I had been fitted with an ileostomy bag (a colostomy bag for the small intestine) after having over one foot of my small intestine removed. This was so my intestine wall could heal before hopefully being reversed and sewn back together later down the line.

Although drifting in and out of consciousness, I was in shock; inconsolable when conscious enough to remember. Lying in intensive care, wired to a monitor to keep track of my heartbeat, Jerome was unable to leave my side. As he tried to let go, my heart rate would soar, the machines would alarm, and the nurses would come running. His presence was the only thing that kept my heart rate stable.

For the first few days in hospital, I refused to look down. Knowing I was stuck there until I was self-sufficient, I had to come to terms with my new appendage quickly. My fears were different this time around – no longer the intangible, ‘why me?’ – but the practical ‘what goes where’. Calm, underwhelmed, focused on the practical: I finally let Jerome look after me. He told me every day that I was still the most beautiful girl in the world, but all I could see was the stub of intestine thrust through my stomach. It looked like a small pink tongue poking out at me.

After a few days I forced myself to get out of bed. I thought if I looked better, I’d feel better. Still attached to my drip, Jerome held me up and washed my hair, even attempting to blow dry it afterwards. He even brought me an antique china cup and saucer to the hospital to have my tea out of, just to make it all feel a bit less clinical.