My symptoms started during the pandemic, when it was difficult to get a GP appointment. I had been dealing with mouth ulcers and consulted my dentist about them, but I was also experiencing recurring abdominal pain. The dentist referred me to see a specialist at the hospital, but my appointment wasn’t until the following year. When I managed to get a phone appointment with the doctor, they suggested I had some blood tests, which later showed that my iron levels were low. The doctor then told me I would need to have more tests when my gums weren’t inflamed from the ulcers. I had a second phone appointment where I was told it was probably IBS.
My symptoms continued, and I experienced urgency to go to the toilet as well as constipation. The abdominal pain kept getting worse and I felt exhausted all the time.
Sometimes the fatigue was so bad, I couldn’t keep my eyes open. I felt like I was failing the children I work with and failing my family.
When I finally managed to get a face-to-face appointment with the GP, I thought they would understand how much pain I was in, but I was again diagnosed with what they thought was IBS. I was told to get some over the counter tablets that would ease the pain.
It was only when I received results from the biopsy of my gums that I found out it wasn’t IBS. The biopsy showed signs of Crohn’s Disease. Before I was able to get a referral to the IBD team, I ended up in A&E with a kidney infection. I was sent home with antibiotics and liquid morphine. Two days later, I couldn’t move because of how much pain I was in. I called NHS 111 and went to A&E again. After a CT scan, I was told that I needed to have surgery. Within 24 hours, I was having parts of my intestines removed and a stoma bag fitted. I was terrified about having surgery, I was scared something would go wrong and I wouldn’t see my daughter again. There was no time to process what was happening to me.
It was difficult to come to terms with what had happened, but getting my Crohn’s Disease diagnosis came as a huge relief. I felt like I had finally been heard and taken notice of. I am happy and confident with my stoma, and my IBD consultants and nurses have been amazing. My Crohn’s Disease is currently stable, and I am so thankful to be able to enjoy my life with my family.
It’s so important that patients get the tests and treatments they need, fast. People don’t deserve to receive the wrong diagnosis or wait in uncertainty, not knowing what’s going on with their bodies. That’s why I’m supporting the Cut the Wait campaign. If I had been taken seriously and had my symptoms investigated fully, maybe I could have avoided having a life-changing operation so soon. It took two years from my initial appointment to receiving my diagnosis after an emergency hospital admission. Two years is too long to not feel heard.
We're calling on the UK Government to take the needs of people living with Crohn's and Colitis seriously. Join us by signing our open letter today.
