My time with Ulcerative Colitis


I wrote the following a few years back to describe my time with Ulcerative Colitis. It’s interesting reading back through it is hard and I hope by sharing it can encourage and give some hope to others:

I was diagnosed with Ulcerative Colitis when I was 13. I had never heard of it before then and all I knew was that I had constant diarrhoea and was going to the toilet about 20 times a day. Medication that normally helps Ulcerative Colitis are: Steroids, Asacol and Azathiporine, none of these worked with me. I spent nearly 4 years on and off medication, in and out of hospital, we sent tests to America, I had a parasite and throughout these 4 years my weight fluctuated dramatically.

Throughout my times with Ulcerative Colitis I found it really difficult. I couldn’t really go anywhere without being worried about needing the toilet, where the closest one was or whether I could hold it! I had been out with friends and had to come home because of an accident, I’ve had it happen in class, it was one of the most embarrassing things as a teenage boy not to be able to control your own bowel movements. It was when I was having these accidents that I realised that Ulcerative Colitis Sucks!

I am a Christian and God has always played a big part in my life, when I was going through all of this I always questioned why this was happening to me, what had I done to deserve this. I still to this day don’t know why but I have stayed strong in God, when it felt like he had forgotten me I was reminded of the people who God had put around me to support me! I have amazing family and friends and that is all because of him. I don’t know how I would have coped with all of this.

One of the many verses from the bible that has kept me going is Psalm 23: 

The Lord is my shepherd, I shall not be in want. He makes me lie down in green pastures, he leads me beside quiet waters, he restores my soul. He guides me in paths of righteousness for his name’s sake. Even though I walk through the valley of the shadow of death, I will fear no evil, for you are with me; your rod and your staff they comfort me. 

Ulcerative Colitis never stopped me from doing anything! I could play football, go out with friends and have a job. I tried to never let Ulcerative Colitis stop me from doing what I wanted to do. I have even been camping! Even though the toilets are disgusting, sometimes I have never been so relieved to see one!

Living with Ulcerative Colitis was not nice but once I’d worked out how to cope with it, it becomes much more manageable. Wherever I went I would take a spare pair of clothes and wet wipes just incase my bowels decided to open. It was sometime uncontrollable but not the end of the world, it would just mean a quick 5 minutes in a loo to sort myself out and I was back on my way as good as new. Trust me, most people wouldn’t notice that I’d been in the toilet a little longer than usual and changed my clothes even though to me it was blatantly obvious!

It was and is hard living with Ulcerative Colitis, and there was so many times where I wished a fairy godmother and rescue me! However knowing that God has a bigger plan for me allowed me to live my life as normal and not let this horrible disease put me down.

At the end of 2006 I had a colonoscopy to be put on a high dose of steroids in a last ditch attempt to make me well. There wasn’t really any other choice due to pre-cancerous cells were beginning to develop. I put on about 2 stone in this time and continued on a lower dose for another 6 months.


Me on a high dose of steriods


Me on the lower dose 6 months later

In september 2007 I had a colonoscopy and it was then that doctors said that I needed to to seriously consider having my colon removed as pre-cancerous cells were appearing in my colon. A week later I was sat talking to a doctor who said that if I didn’t have it removed I could get cancer within the next 5-10 years. Obviously the decision to be made was clear, a week later I was sat talking to a surgeon who was going to preform the surgery and 5 days later it was out!

At the 17 I had had an organ removed and had a ileostomy

4 thoughts on “My time with Ulcerative Colitis

  1. Chloe Dicker

    This is an amazing story Luke. What a beautiful wife you have! Hope you are doing well and glad your okay. It’s been a long time 🙂 xx


  2. Paul Nichols

    Hi Luke
    Long time – but I performed your first operation with my Colleague. Have touched base with your blog over the years and so glad to see you happily married.
    Wishing you all the best for the future.
    Paul Nichols


  3. Devin Corso

    I’m studying to be a medical coder and looked up what an ileostomy was and saw your picture of the stoma and bag. I’m so sorry for what you’re going through. It must be terrible.


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