Hi, my name is Keith Thomas, I am from Swansea in South Wales and I will be 54 years old in July. I have been invited to share my personal story regarding a serious illness that I developed about 10 years ago and how it has affected my life. So here goes…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. Little did I know that these episodes were to change my life so dramatically.
By the time I was 43, I had been a coach driver for several years and spent a considerable number of hours waiting around for passengers to return from their trips. Filling the time was mostly spent catching up on sleep (sleeping across coach seats) and lots of time snacking instead of following a sensible diet- so when I was getting these bouts of illness I just put it down to my life style,
I have never been a drinker, I’d rather have a cuppa to be honest, but since an early age I had been a heavy smoker. One day after a smoke, however, I felt dizzy and started sweating heavily. I didn’t know what caused these symptoms but I took it as a sign to give up smoking. I used nicotine patches for 12 weeks and for the last 10 years I have been a proud “non-smoker”. It is amazing what you can do if you put your mind to it!
Now I have to say, it went through my mind quite often that my episodes of illness seemed to have got a lot worse after giving up smoking but maybe I was just looking for an excuse to go back to smoking. It was when I was diagnosed in 2008 with ulcerative colitis after many years of not knowing what was wrong, that the Doctor informed me that this disease was most common in non-smokers!
The diagnosis came about after yet another trip to casualty- 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 a worry. I feared they were going to send me home 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.
Previous visits to the hospital and then my GP had led to some tests which included a barium enema where they fill your bowel with a white liquid that will show up on an x-ray. It also involves air being pumped into the large bowel to make the x-ray easier to see. Then they move you around and x-ray you; I have to say I have been on better fairground rides! But this time, while I was in hospital, I had my first colonoscopy and being a big brave man decided to have it without sedation. Big mistake. It was ok for a while but soon got extremely uncomfortable; even joking with the nurses that this was the best TV I had seen in ages did not help.
It was after this colonoscopy that I heard the words ulcerative colitis for the first time. In actual fact, Crohn’s disease was also mentioned – not an entire surprise as my sister has suffered with that for many years. Either way, my condition had a name and they could start treating it with tablets. At first, they started me on 40mg of Prednisolone steroids, OMG – 10 minutes later I was a new man and ready to go home and put all this behind me, (no pun intended.) But it didn’t last. As instructed, I slowly began to wean myself off the steroids but as soon as I reached 10 mg I would have another flare up.
By now I was having regular check-ups with a consultant in Morriston hospital and he put me on Pentasa tablets and later on Azathioprine, an immunosuppressant. Those along with the steroids I was also on, plus the endless blood tests to make sure the tablets were doing no harm became pretty tiring. I was also required to have repeated colonoscopies- but now with sedation – so much better. Life however became pretty miserable. 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 went through an awful lot of Immodium around that time I can tell you. Simple everyday things like going shopping were now 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.
After four years of trying to control my condition with more than 20 tablets every day, including all the steroids, I arrived home from work one evening in May 2012 suffering really severe leg cramps. I have to say I was on the point of crying, but after a while it stopped. The next evening the same thing happened with the leg cramps so I phoned the “out of hours” doctor. I was told to attend the surgery in Morriston hospital that evening, and when I saw the doctor she said that I was to be hospitalised immediately as something was not right – I had a fever which suggested there was an infection somewhere. Looking back now, her swift action probably saved my life.
I went into Singleton Hospital in Swansea that night in May 2012 and the staff spent 10 days stopping my bowel from perforating- thankfully they did but I was told there was no saving my bowel. I was pencilled in for an operation on 22nd June 2012, a day that gave me my life back.
My Ileostomy and Stoma
First of all I had to decide whether to have a total colectomy or to have a J pouch. I took the opportunity to speak to people who had been through both procedures to make an informed decision. I decided that the “no pouch” option sounded far better so I went with the mind-set that it would be one operation – one recovery. My surgery was therefore a total colectomy and was done as a laparoscopy (keyhole surgery) so I had no big scar to cope with and this definitely made my recovery much quicker. I was in theatre for ten hours – did the surgical team go out for lunch? I was discharged two days later and after a six week recovery period, returned to work. There were a few setbacks in that time, for example some of the stitching in my rear end came adrift a little bit so I had to visit a nurse daily over several weeks to have the wound packed and dressed. I also had a slight infection under the skin near my stoma that seemed to be more painful than my operation, but two days in hospital sorted that out.
All through my illness I had changed a lot as a person. I had severe mood swings, depression (being ill changes everything – all the fun in life was gone). But it meant everything to have the love and support of my family, their strength gave me strength – they knew that it was still me – it was just the illness that made me that way. I got through it and now the old me is back. I need to say a big thank-you to my wife Jane (who had to inject me for 28 days to when I came home from hospital so I did not suffer DVT, infact I think she enjoyed it a bit too much!!
There have been some adjustments to my routines, naturally, but the routine I have for managing my ostomy bag is no harder than looking after a baby. I have a loose stool collected in a bag now similar to a baby’s in a nappy. Sometimes I have sore skin like a baby but if it is looked after and the bag changed regularly, it’s another toilet routine and easy to manage. There are so many fantastic products out there, available from many companies, to make it easier and more manageable – and if you want to try something new you just order a free sample, it’s that simple. I have just tried a two piece bag instead of a one piece so have decided to use two piece from now on as it works better for me.
After a while back in my factory office job, I decided that I was well enough to leave and go back to my passion for bus driving. A vacancy came up for a First Cymru driver based in Llanelli. I applied and got the job. I will have been driving for two years in June. I work a 40 hour week and now I am never late for work and more importantly, I have no time off ill
I know I have a very positive attitude and this has definitely helped me cope and get me where I am today. Through writing my story for Pelican Healthcare and sharing it on Twitter I have had a story published in our local evening paper. This was followed by a radio interview on BBC Radio Wales and now I am writing this. By doing all of these things I have tried to raise awareness about the disease and the effects of it. I decided that having had such a life changing operation, I wanted to try to help others in my position who might be having to make the same choice. I hope I can continue to do so as every one person this helps is another smile My message to all is, “There is life after illness – look at me!”
*The opinions expressed are the bloggers own and do not necessarily reflect the views of the World Health Innovation Summit.