My story started in the early months of 1999. I was having pain going to the toilet and was losing blood. I remember that there was a TV campaign at the time telling men to check and see their GP if there was any sign of abnormality. I took a visit to my GP who examined me and suggested I could have some sort of piles: with this, I went away and got on with living.
More and more frequently, I was experiencing blood loss and increasing levels of pain. My GP arranged for me to have a colonoscopy, and I was informed there was a small amount of inflammation found in my colon. I was never given any medication. It was almost as if it was forgotten about. But the truth was I kept experiencing blood loss and severe pain when going to the toilet. I was also suffering from severe headaches.
Eventually I was taken into the QE hospital and placed on the Neurology ward. For some reason they always dismissed my complaint of stomach aches and concentrated on my head issues. I had terrible mouth ulcers which they treated me for, but still dismissed my stomach pains. After a week as an in-patient, they finally looked at my stomach. I was then moved to the Gastro ward and was seen by Professor Keighley, who, after examining me, said that I had Ulcerative Colitis and was going to be considered for surgery, having tried to treat it with steroids which didn’t work. That was on Wednesday 13th October. On Friday 15th, Professor Keighley came to see me and said that I would be having surgery on the following Monday. Unfortunately, on the Saturday evening I experienced a lot of pain and lost a lot of blood, resulting in my having emergency surgery. I had the whole of my colon removed and was given a permanent ileostomy.
This was the start of my present journey. I now had a stoma. I took to living with a stoma right away. Like everyone else, I was told I had to stay in hospital at least until I could manage the stoma and change my own appliance. I was told that this could take some time, but I was determined to get on with it and get home as soon as I could, so every day I walked past the Professor’s office, and fifteen days later, he sent me home. I had a stoma nurse assigned to me who was supportive and helpful, giving me lots of advice, encouragement and faith in my new way of living.
I was supported through all of this by my partner John, who was there at my side from day one. He learned to change my appliance in case I couldn’t, and seriously, there have been times when that has happened since I had surgery. Three months later, I returned to work.
Work was relatively easy as I was a Sales Manager and drove all over England and Wales, and I soon learned where the toilets were on my daily routes. I was coping and living a normal life. I had a few difficult experiences where I suffered leakages. The first ever was when I was with a customer, and I felt a leak. I quickly made my excuses and went into a fast-food chain to clean myself up, and then quickly headed home. I remember being upset and embarrassed because I wasn’t ready or prepared for it.
From that point on, I was determined never to feel like that again. I have changed my appliance since in every possible circumstance: on an aeroplane, in a field, in the car – it would not faze me now to do it anywhere.
As my job involved me being on the road travelling, Prof Keighley decided I would be better off having a total colectomy. This surgery took place in 2000. The recovery from that surgery was difficult and it took me a while to get back on my feet, but it stopped the leakages from my rear end. Since the I have had very little trouble. I have become used to my two-piece appliance and I don’t feel the need to change to a different type.
Years passed without problems, but in 2017 I experienced horrendous stomach pain. I was admitted to the QE and was treated for a blockage. These have become a regular occurrence as I have adhesions, and I am now waiting to see if I will have surgery to have them removed. I have retired now, so all of the work stress has disappeared, and I am able to enjoy my hobbies of walking, swimming and going to the theatre.