I’d just come back from holiday in Turkey in September 2013 when I experienced the first symptoms of bowel disease. I felt the need to go to the toilet a lot and remember thinking I must have caught a bug in Turkey. I tried to carry on as normal and ploughed on with plans to do the Great North Run in Newcastle, UK.
On the day of the run my friend who I was doing the 13-miler (21km) with noticed I was going to the toilet a lot and said I should get it checked out. I managed the run but the feeling of wanting to do a bowel movement continued.
Back home in Bedford, UK, I went to see my GP and presented my symptoms. The doctor did some blood tests and a couple of weeks later I was referred to Milton Keynes University Hospital for a colonoscopy, where a tube is used to examine the inner lining of the large intestine.
I wasn’t too worried and reasoned there would be a simple explanation. As a tennis coach and county tennis champion, I was in peak fitness and couldn’t believe there was anything seriously wrong.
When the results came, the doctor said I had ulcerative colitis, where tiny ulcers cause inflammation of the inner lining of the rectum and colon, otherwise known as the large bowel. It’s one of the two main forms of inflammatory bowel disease (IBD).
It took a while for the diagnosis to sink in. I’m not a worrier as a rule, so I tried to remain calm and positive. I broke the news to my girlfriend Jamie Jackson, now 24, a quantity surveyor, and although concerned, she was incredibly supportive. We knew it was serious but we tried to think logically about what steps we needed to take. I realise now I was very lucky to be diagnosed so quickly – some suffer with this for years.
I was put on a high dose of steroids, which had an immediate effect at first and my symptoms disappeared. But as the dose was gradually reduced over the next month, I began to feel bowel pain.
My GP referred me to Bedford Hospital to look into possible surgery. But after being examined by a surgeon, I was told that the condition was not yet serious enough for surgery and I should return in February. Weirdly, this made me feel better. I felt reassured.
‘I must be making a big deal of this,’ I told Jamie. ‘If I keep busy and carry on as normal, hopefully it will all be fine.’
Then, a few days later, one night I woke up in agony. ‘We’ve got to get you to hospital,’ Jamie said. She drove me to Bedford Hospital’s Accident and Emergency department the next morning. After examination a doctor said: ‘It’s good you came in. If you hadn’t you would have been dead in 24 hours!’
I was horrified. Despite me thinking I was OK, my organs had started to shut down.
Another two weeks of high dose steroids and cortisone via a drip followed. I was also fed food via a drip because my body had stopped absorbing nutrients and I was anaemic too. They also tried a treatment called infliximab, a series of drugs that aim to reduce the symptoms of IBD.
I was fading fast. From a 5ft 10inch sporty type weighing about 73kg, I was now down to a skinny 54kg. I was seriously malnourished.
Then one night my bowel literally popped; in other words, it was perforated. I developed life-threatening peritonitis, which meant the toxins in my body were attacking my organs. It was December 23, just days before Christmas, and I had to wait eight hours for surgery. I was in absolute agony.
At 4am, a surgeon was finally available and it took seven hours to entirely remove my large bowel. I was in so much pain I didn’t know what was going on. But my parents, Sheila, 59, and Jeff, 58, and Jamie were told I had a 50/50 chance of survival. The next 10 days I was in intensive care. When I came around, I remember seeing mum, dad and Jamie smiling. I didn’t really know how close I’d come to death.
‘How are you feeling?’ asked mum. She later told me how they’d all been sitting anxiously in the waiting room during the operation, holding out for news. ‘I told your dad to go and do some Christmas shopping to take his mind off it,’ she smiled.
By the time I recovered and was ready to be discharged, I had spent four weeks in hospital. I had a temporary colostomy bag, a pouch placed over the end of the bowel to collect my body’s waste products. It wasn’t easy to deal with but at least I was alive.
I’d only been out of hospital for a week when I ventured out for the first time to a restaurant near my parents’ home. I could only walk a few metres at a time and had to keep stopping because I felt light-headed and dizzy. But I made it there and back, despite still feeling sore due to the surgery.
‘Well done love,’ mum said when we reached home. ‘I’m sure things will get easier from now on.’
I flopped on to the sofa and put my feet up. ‘Night night.’ mum said, as she went off to bed.
Then, as I tried to move my left leg, I felt a twinge, as though I’d pulled a muscle. I moved my leg again and felt a shooting pain.
Thinking I really had pulled a muscle, I decided to get to bed and rest it. But as I walked up the stairs I felt something pop in my leg. My leg seized up and I couldn’t move it. I had to physically drag my leg with my hands up the stairs. At the top, when I looked at it, my calf was rock solid and had turned purple. I staggered into my parents’ room and mum, a nurse, knew straight away what it was.
‘It’s DVT,’ she said. ‘We need to get you back to hospital.’
Back at Bedford Hospital, I was put on blood thinners called warfarin. It was only after being diagnosed with a clot that I was told patients who have recently undergone surgery are particularly at risk.
For the next five days, I couldn’t move my leg or even wiggle my toes. A physiotherapist came around to try to get me to do exercises like lifting my knee – it was like recovering from a broken leg. Doctors couldn’t even get a support stocking on my leg because it had ballooned up.
I wasn’t able to put my leg down without being in agony and I couldn’t even walk to the toilet. I had to keep the leg elevated and spent the next two weeks in hospital.
I kept telling myself it would be fine and I’d be back tennis coaching in no time – but the doctors were less optimistic.
One said: ‘Your leg will never be the same again. It will always hurt and you will have to wear stockings for the rest of your life.’ He also advised me to avoid contact sports and said I should never play football - one of my favourite sports.
I was horrified. I found it so hard to believe that nothing could be done and I’d be in pain every time I exercised.
But they were right. I went from running a mile in six minutes in the Great North Run to 13 minutes, and then collapsing in agony. It was frustrating, but I always told myself that everything would be fine.
Then mum read about a woman who had a groundbreaking operation that cured her DVT. I went back to my GP and they happily referred me to Guy’s and St Thomas’ NHS Foundation Trust in London where the procedure was known.
However, before I could be considered, I had to undergo a surgery to repair my bowel in February 2015, then another one in July to put my bowel back together so that I no longer had a colostomy bag. After that, I was assessed for the DVT op and as I was young and fit, I was accepted as a patient of Dr Stephen Black, a consultant vascular surgeon at Guy’s and St Thomas’.
He explained that DVT is a blood clot that develops in a large vein, usually in the leg. Normally, blood flows quickly through veins, but factors such as being inactive can slow down this flow and trigger clots.
My clot was in my lower leg and although blood-thinning drugs prevented further clots, they don’t dissolve the existing clot.
The new procedure I was about to try involved fitting a stent, a tiny cylindrical mesh tube that acts like scaffolding, widening a damaged blood vessel so blood can flow normally.
For me, it would be fitted from the hip upwards to make sure blood to the heart and lungs is free-flowing.
Called the Veniti Vici Venous Stent, it has the same strength end-to-end, so is crush-resistant. It’s made from nitinol – nickel and titanium – which is more flexible than other metals. Dr Black explained how the stent can be compressed to a very small size, meaning they only needed to make a small incision to place it. Once inserted, it expands and reaches full strength at body temperature. It is also slightly larger than a normal stent.
With a success rate of 90 per cent, I was willing to give it a go.
I had the stent fitted in December last year under general anaesthetic. A thin tube, a catheter, was inserted and this released the stent into the vein.
The next morning I was able to move my legs freely without any pain. And there was no swelling. It was amazing and instant!
I remember taking myself home the day after the operation and walking across Westminster Bridge without any pain. I walked about two miles and it didn’t hurt!
I went to work the next day as normal and even went on the treadmill for 10 minutes – pain-free. If I’d done that before the stent operation, I’d have been in agony.
I was, however, told that there was a 33 per cent chance that I’d get a blood clot in the stent in the week after the procedure.
About three days in, my leg started to hurt again and I recognised the pain as a blood clot. I rang the hospital and was admitted overnight again for a quick operation to clear the blockage in the stent. The pain disappeared again.
I had an ultrasound two weeks later, which showed everything was fine, and I had another one on June 6 this year, which was a six-month check – all was well.
I am delighted with the results and feel as though I’m back to full fitness. All I have is a small scar at the top of my leg where the stent was fitted. I’m told the stents will last a lifetime and have been advised to take blood-thinning warfarin for a year after the procedure. But that is the only medication I’m taking.
I no longer play football as a precaution but I play cricket two or three times a week and am back coaching and playing tennis as before. Even my bowels are back to full health and no longer causing me trouble.
Surgery gave me my life back and there’s no reason why I can’t stay this healthy forever.
Rob Stean lives in Bedford, UK.