‘They told me I could never play sport again’

Af­ter a long spell in the hos­pi­tal with bowel dis­ease, Rob Stean, 30, devel­oped ag­o­nis­ing deep-vein throm­bo­sis, and was told his leg would never be the same

Friday - - Travel Real Life - Rob Stean lives in Bed­ford, UK.

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

One night I woke up in AGONY. At the hos­pi­tal, the doc­tor said if I hadn’t come in, I would have been DEAD in 24 hours. De­spite me think­ing ev­ery­thing was OK, my or­gans had be­gun to SHUT DOWN

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 crushre­sis­tant. 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

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. Then mum read about a woman who had a GROUND­BREAK­ING op­er­a­tion that cured her DVT

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.

Iam 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.

Even as I com­pleted the 13-mile Great North Run in New­cas­tle, I knew there was some­thing wrong with me

Through all the pain and surg­eries – in­clud­ing one to en­tirely re­move my large bowel – my girl­friend Jamie was an in­cred­i­ble sup­port

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