I often say, “I love my life” and I really mean it. But when I look back to what was going on with me 20 years ago and during the following years until 2012 when I had my stoma, there has been so much change it certainly was a different story. For this blog, I went back and read one of the accounts of my life with UC and it was quite emotional to remember just how ill I was. Life pre diagnosis was AWFUL!
A: Aches (and pains)
While in my early 40s I began experiencing a lot of bad stomachs, feeling unwell all of the time; I spent many hours- too many really- suffering with diarrhoea and bloody stools. I always knew when it was about to flare up as I would have a burning sensation in my sides, truly as if my sides were on fire, and the only thing that would stop it at the time was a few ibuprofen tablets.
For most of my life from my teenage years I played football regularly, for several teams over the years. This meant outdoor football at weekends and indoor football during the week so I was a very fit person. But now my limbs ached, I had so little energy, I developed mouth ulcers and felt very sorry for myself. Little did I know that these episodes were to change my life so dramatically.
W: Worry
I began to worry about everything. I was in constant pain, I was losing weight and was gradually beginning to have days off work, which in turn meant little money. Financial worries as well as health worries made life very difficult for me and my family. Suffering with my ulcerative colitis was the first time in my life I had felt true depression. I felt really isolated and often shut myself away in the sanctuary of my bedroom, avoiding contact with anyone. Being “ nice” to people was too much effort. I didn’t want to join in any family events, socialise with friends, and even going shopping caused me too much anxiety. I was constantly worrying about potentially losing my job, losing money and about my future in general. I felt I didn’t have anyone to share my feelings with and that made me irritable, angry and sorry for myself. I became so easily wound up by the smallest thing, and this made me difficult to live with. That, in return, made me want to distance myself from people even more- particularly my family.
F: Fear
As my illness developed, I Became a frequent visitor to Morriston Hospital in Swansea. The symptoms I was experiencing were getting worse and I couldn’t seem to get anyone to listen. My diagnosis actually came after yet another hospital visit – I had become quite a regular in the A&E department in Morriston Hospital! But this time my symptoms had become a lot worse. I was in agony with pains in my sides, and I was passing lots of blood which was very scary. I had a horrible feeling I would be sent home once more with painkillers and antibiotics again, but the doctor who examined me realised how dehydrated I was and decided I needed to stay in hospital overnight on a drip to rehydrate. I ended up staying all weekend and it was only then that the nurses noticed my frequent visits to the toilet – a lot more than normal – I brought to the attention of the nurses how much blood I was losing during each motion and once they examined the sample I gave them, ‘alarm bells’ sounded and then things started to happen a lot quicker.
U: Upset
I felt that I was living in a world of unknowns and I was constantly getting upset by the impact of the UC on my everyday life. I struggled to get through a shopping trip, go out for meals, travel anywhere to visit friends and family, go swimming or go for a walk. I would always have to be near a toilet in case I needed to go in a hurry which in itself was embarrassing; I began to have a heightened awareness of how often I had to excuse myself and head for the bathroom!
I was also upset about how my appearance and my personality changed. Steroids, immunosuppressants, all took a toll on my self esteem. It was tough. I went from being the life and soul of the party, to being an unknown person who shut himself away from loved ones. It was because I felt so bad about the way I was feeling that I did not care about upsetting others. I suppose the people who really knew me realised that this wasn’t who I really was, but there are others who have struggled to forgive me. I was very intolerant of my teenage stepchildren and their typically selfish attitudes to life. I found it really difficult to cope and they in turn found it really difficult to cope with me and my black moods.
L: Limited
If I wanted to go out socially, I had to plan my day carefully. I couldn’t eat or drink as that would put my bowel into immediate action! I certainly went through an awful lot of Immodium around that time. As I mentioned above, simple everyday things like going shopping were out of the question, as on a bad day, I would have to find the nearest toilet within minutes. Going out for a meal in my local pub became pretty impossible – and that was something my wife and I always liked to do every week – a treat on pay day. I was limited in what I could eat or drink, my favourite foods often didn’t agree with me. I did manage a holiday in Portugal pre-ostomy but again my illness stopped me making the most of that opportunity as I’d have to stay in bed for long periods of the day.
Post stoma, my life has changed enormously. I am once more the life and soul of the party and am totally committed to spreading positivity via my social media. I can pretty much eat and drink anything I like, travel without worrying, shop ‘til I drop, and life is fantastic. Having said that, I am always mindful of making provision for my stomach; planning ahead is always a good thing. I have spare products and clothing in my cupboard at work, I carry spare products in my work bag, in the car, and sometimes in my wife’s bag if we’re out together. I make sure I have plenty of suitable drinks to hand to stay hydrated and I have my radar key to allow me to use accessible toilets when I need to. Having a stoma has changed my life and I can’t honestly say it is the best life; I have never regretted having Homer the stoma as he has given me a quality of life I never thought I’d have again.