My story

Fairly new to ulcerative colitis. I first went to the doctor in October 2016 bleeding from bum. One always thinks the worst, so great that I was referred to Frimley for a camera endoscopy quite quickly, end of November. Had bad inflammation of the bowel. I then got lost in the system and didn’t get any feedback or treatment until I chased Frimley at the end of January. I had a follow up endoscopy in July but was no better. I was losing weight and planning things around where toilets were. By the beginning of September 2017 I was so bad I ended up in Hospital for a week on steroids. Changing drugs and the steroids saw some improvement. By the middle of October I was starting to feel human again and could manage trips out without the fear of not finding a toilet. Went to Kingston shopping for the day and actually commented to my wife how much better I felt. Then it all started up again, only worse than before. One week later I was in Frimley again and they were talking about removing my colon! Turns out I had picked up food poisoning, campylobacter, at Kingston food market. Steroids, antibiotics and the fear of losing my colon saw me improve quite quickly. I was home after a week fully intact, complete with colon. Talk about bad luck. The food poisoning was missed at first because of the colitis. Quite understandable though.

Since then things have been in control. I didn’t realise how much this problem drained me. I had become quite lethargic and bad tempered. With hindsight I think I had suffered with this for years and it was kept under wraps by my smoking. Nicotine is a good anti inflammatory, and I had weaned myself off of cigarettes by using vaping and had just reduced the nicotine to zero when my symptoms started.

I am now doing all the jobs I had left undone around the home rather than just sleeping whenever I sat down. Energy levels have recovered and people have found me bearable to be around again. I think I upset quite a few before I was diagnosed and treated.

This patient group was a real help. Talking to fellow sufferers helps put things in perspective and helps with strategies to cope.

I know I still have the odd bad day, and I am still working on finding all the triggers, but life is so much better now.