I was diagnosed with inflammatory bowel disease in 2015. Ulcerative colitis, to be precise, which is a form of IBD that causes severe inflammation in your colon and sometimes, rectum.
When I was nineteen, my bowel perforated. I had been going to the doctors for a year before this happened; concerned that something was truly wrong. I had been losing an excessive amount of weight, had experienced horrendous stomach cramps, and eventually, chronic constipation, and rectal bleeding.
I was called a “hypochondriac”, and told that it was just “women’s problems”. No matter how many times I pleaded with the doctor to run some tests, I wasn’t listened to.
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I was very outgoing when I was nineteen. I’d just moved into my first flat with my partner, something I had saved up for myself for months before by working non-stop at the local pub. It was something I was immensely proud of because I come from a working-class background with little money.
My ex and I had little money, too — but we had ‘our place’; a little loft flat above a small family. We made it our own and felt like real adults as we were both working long hours to afford it.
I would go out with my friends and catch up with people all the time — I was physically insecure, but hid it well, and found it easy to communicate with people. I had fun. Being nineteen was fun. Until everything changed.
I suddenly became really unwell around New Year 2015. I was mostly delirious, in and out of consciousness, using the toilet around 40 times a day with acidic diarrhoea that made it painful to go. I was physically, emotionally, and mentally drained. I was turned away from A&E three times before I finally went to stay with my parents because I couldn’t cope at home.
It wasn’t until my mum found me lying on the floor in pain that she decided to take me over to her own doctor, who pre-diagnosed me with appendicitis. As soon as we arrived at the hospital, I was taken down to theatre and had my appendix removed. But this wasn’t the problem. In a side room of the hospital, I deteriorated over the space of a week, all of my observations alarmingly high and pre-septic. I was in agony, and couldn’t stop going to the toilet.
On the Saturday of that week, I was lying in my hospital bed crying in pain, with the nurses around me trying to up my pain relief. Suddenly I heard popping noises coming from my stomach. My bowel was perforating inside of me. My mum screamed for a doctor, with the nurses frantically continuing to up the pain relief. The next thing I know, I’m sent down to theatre and awoke with a stoma bag.
The histology report showed that my bowel was severely distended and inflamed, and they removed the entire colon. They then diagnosed me with ulcerative colitis.
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Six years on and I no longer have the stoma bag, as I had it reversed — in an operation that connects my small intestine straight to my rectum to allow me to go to the toilet ‘normally’. I now have chronic diarrhoea and frequent flare-ups with rectal bleeding, as I have active colitis in my rectum, still.
The whole experience has left me scarred, and I honestly feel like a shell of the person I once was. I am no longer outgoing; instead, I am nervous and uncomfortable around people. My body has changed so much and no longer feels like ‘mine’.
I am lucky in that I have had a child since — something my surgeons told me would likely never happen due to the amount of abdominal scarring I have — and he is my absolute world. My life is filled with being a working mum, and I wouldn’t change it for the world.
But I can’t help but mourn my former self. I feel like I didn’t get to live out my early twenties, instead, I spent those years processing medical trauma, and losing myself in the process.
Having inflammatory bowel disease is hard — it’s completely different to IBS and is life-threatening. Every time I have a flare-up I suffer from flashbacks to the operating table, to looking around the room telling everyone I loved them because I was sure I was going to die. In fact, I was twenty minutes away from it.
But this experience isn’t what affects me most — it’s also the amount of time I struggled in pain for, delirious, out of it. The length of time from falling sick to being operated on and waking up in what felt like a different body with a bag attached to me and my bowel poking out of my stomach.
I don’t want people to feel sorry for me. I just want to tell my story, because it’s a disease that more than 300,000 people in the UK live with.
I am lucky in that I made some amazing friends through IBD support groups, like The Toilet Me & IBD, but it still wasn’t the same. I missed feeling confident enough to go out. I lost my job. I had to move back home and start all over again.
It was all worth it to have what I have now — a loving family and a beautiful boy. But I wonder what my nineteen-year-old self would be doing if she was still here. If it hadn’t happened. If I’d carried on being ‘me’.
I wonder if I’ll ever see her again.
And who knows? Maybe I will. Maybe I will come out of my shell and reignite the light in who I used to be.
There is no happy ending to this story; it is more of a vent. A realisation into how deeply inflammatory bowel disease can affect you; not just physically, but mentally and emotionally, too.