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.
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.
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.
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