For around another year or so, I put up with my digestive symptoms. I tried to discuss them with my GP on a few occasions, but nobody would listen and so I just stayed quiet.
In spring 2023, my symptoms worsened again, with me now experiencing incontinence, along with cramping, bleeding and sickness. On top of this, I suddenly developed what I was told was a broken rib – I have a theory that my colon was swollen and causing pain. Enough was enough, I had just moved house, so I went and saw my new GP.
I explained my history and she begrudgingly agreed to refer me for an emergency scan. At first, I was being investigated for Cancer, but then they went on to look for other things. I had a CT Endoscopy which to everyones surprise and horror showed extremely severe ulcerative colitis.
According to the gastroenterologists I’ve spoken to, it’s very rare to be diagnosed with UC by just having a scan, but mine was so severe that there was no missing it.
It turns out that I could’ve had this for many years and it may explain the flares I’d had growing up of my digestive issues.
What came after my diagnosis was several rounds of steroids, trying to get a grip of the inflammation in my digestive system and calm it. These did help for a time, but unfortunately, they’re only a short-term solution and each time I would come off them, things would get worse.
I was found to be extremely anaemic from all the blood loss, so I was given iron infusions, which helped. I lost a lot of weight from the lack of absorption and my hair fell out.
In September 2023 I had a pillcam endoscopy which showed inconclusive results, but the preparation for it made me extremely unwell and I began to go downhill even more afterwards. I couldn’t leave the house without having an accident and I was consistently anxious if I wasn’t in the bathroom as I would have to go without any warning.
In November of 2023 I was started on biologic infusions to try and calm the flare I was having of my colitis, but these didn’t work. I had six doses of Infliximab in total, but they only made me sicker. I ended up on these and steroids at the same time.
