My appointment with the surgeon – my dream granted and the more serious stuff.


Today I had a very long overdue appointment with the surgeon. After the hardest week

not my surgeon but an internet pic

not my surgeon but an internet pic

at work to date, exasperated by gaining a horrid flu-like bug – thank’s to my none existent immune system someone only has to sneeze on Mars and I get a cold – I dragged myself out of bed and traipsed to the hospital to see the man who formed Winnie and finally got me under the knife.

Ok, before anyone yells at me, I know that you’re not meant to attend the hospital if you have a bug, because you could cause an epidemic, but I was not going to let a stupid cold stop me going to this appointment because, to be quite frank, who knows when he will sodding well have time to see me again. These appointments are as rare as gold dust. Trying to get an appointment scheduled for anything at the hospital is an absolute nightmare, but trying to get an appointment with a surgeon, well that’s taking your negotiating skills to a whole different league. For all the effort and constant calls it takes to get yourself slotted into a surgical outpatients clinic you would think they were trying to build a mechanical army – but in reality when you get there the waiting room is always empty and your surgeon is simply not as ‘oversubscribed’ as his secretary would like you to believe.

Oh and did I mention that these ‘rare’ meetings with my magic-hands man are scheduled months in advance – three/six months – and that forgetting them is a sin punishable by being struck-off. Scary stuff…they are highlighted around eight times in three separate diaries, two email accounts and even pencilled into my work diary for court cases – that’s how scared I am of being erased from that not so full book.

Anyway I dragged myself to the hospital while suffering from red-eyes and hair that looked like I’d stuck my finger in a plug socket. And found myself in the main outpatients waiting room full of people (who had also been too scared to miss their vital appointments) spreading their germs around to other people with little immunity to shield themselves. I sat there for around an hour before deciding I had been forgotten and taking myself through to the surgeon…to find that I was the only person waiting to see him.

Anyway, enough rambling, I walked into the room, sat down and waited for Mr Johnson my very lovely surgeon, who always seems to feel it necessary to hold my hand while telling me anything – nice, but sometimes a little too much if I’m feeling emotional. Today he told me how well I looked – a lie as I looked like death – and asked me how things were going, seeming unimpressed when I told him I had apparently been abandoned by the gastro team and was still on zero significant medication to help the flare-up of Crohn’s/Colitis I had been dealing with for the past three months.

He was also startled at the state of my skin, which is red and oozing around my fistula bag from all the leaks in Rome, which feels like a lifetime ago. The decided that in order to live a relatively trouble-free life I would need to have the remaining part of my redundant bowel removed so that I could be free of the pesky fistula…but that he was concerned about me having further surgery at such a young age.

I was like DO IT!!!! During the appointment I stressed that I wasn’t sure about reversal..what if the disease came back worse than ever when they reconnected me, what if I had to have more operations…I mean would it not be better to save myself all that pain and just have the whole thing removed once and for all? Me and Winnie (my stoma) are getting on just fine, maybe I will regret it in time (maybe I won’t) but for now I could see myself living just perfectly well with an ostomy bag for the rest of my life. I told him this and I seemed to make his day.

Like a frog

Like a frog

Before he got rid of me with a ‘you’re one of our favourite patients’ and a bit of intense handholding and eye contact as he explained I would need to have a serious think about the next step, which would be another significant operation, I braved the question I have asked on so many occasions and been met with a heart-breaking no!

“Can I swim?”, I said battering my eyelids and trying to look like the cute cat with big eyes in Shrek.

“Last time I asked I had the open wound, I love swimming, I think it would really help my stress levels”

And would you believe it he said: “There’s no reason why not!”

I felt like soccer punching the air and jumping for joy, and he looked genuinely delighted to be giving someone positive news after what had obviously been a trying morning.

Oh and he said I can have a bath….the luxuries!

So I’d like to say I left the hospital with all these incredibly serious thoughts in my head, permanent or not permanent, risk the J Pouch or have it all whipped away? But in reality all I could think of was dipping my head into water and swimming like a little frog up and down a clear blue swimming pool dodging other swimmers in a race to get to the poolside, with nothing on my mind but the soothing repetitiveness of counting the lengths against the water splashing in my ears.

That’s heaven, and once I’ve had my piece I will get on with the serious stuff.

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Meeting Olympic legend Sir Steve Redgrave – a true Ulcerative Colitis hero


Last week I met Sir Steve Redgrave. Many people know him for being an Olympic rowing legend – one of the most decorated Olympians in history, but few know that he has suffered from Ulcerative Colitis for the past 11 years.

Me and Sir Steve Redgrave - legend

Me and Sir Steve Redgrave – legend

When he first showed symptoms in 1992 he had no idea what it was. Just like all of us with IBD it came as a total shock to his body, but for him as a world-class athlete who was about to compete in the Olympics I can only imagine what that sort of pain would have done both physically and mentally. I mean if a pain like that can floor me and leave me screaming to die I wonder what it did to someone like Sir Steve, who surely was the fittest he had ever been in his life…he says he was doubled-up in pain, we’ve all been there, why didn’t he just curl up in a ball and give up?

I remember when I first found out that Sir Steve had IBD. It was when Darren Fletcher – Man United footballer – first revealed that he was going to take a break from the sport as he had been diagnosed with Ulcerative Colitis. The Daily Mail ran a story on Sir Steve Redgrave having the condition. My first reaction was, that can’t be true, that’s totally made up (and I’m a journalist!), my second thought was WOW, my third was WHAT’S YOUR EXCUSE???

I know that everyone is different. If we were to compare notes I think I would win hands down for how much my illness has effected my life…I think I would be able to say that it has stopped me doing more things, caused me more pain and caused me more humiliation in life. But from one story how do I know that? How do I know that he’s not sugar coating this illness when he says he never suffered from vomiting or uncontrollable diarrhoea…I don’t, and this isn’t a ‘who’s bowel’s the most destroyed competition’, it’s an unbelievable story, from a unbeleivable human being who has shown me that anything is possible no matter what.

It took doctors four months to diagnose his condition. Why? Because unbelievably he carried on training for the Olympics despite the crippling pain and his bowel disintegrating into a blood bath, he simply refused to stop rowing, and because of that some specialists simply refused to believe that he could have anything as debilitating as IBD – he was superhuman and they thought it had to be something else:

“One specialist had ulcerative colitis as the last thing on his list because he couldn’t believe anyone with the disease could do strenuous Olympic training, says Sir Steve in the Daily Mail article.

Sir Steve Redgrave won his third Olympic Gold medal in Barcelona, destroying the opposition with his partner Matt Pinsent – and he did it in a boat in the middle of the water with his bowel screaming with pain and probably at the back of his mind constantly that he could need the toilet at any second.

He almost didn’t get there though. He almost got pulled from the team – imagine how different our sporting history would have been then. He almost didn’t do it, but he did, he refused to let it stop him, he could have lain down and said I’m too ill, I’m not doing it, but he didn’t, he battled on. He refused to miss one training session because of his Colitis, even when he was doubled-up with pain, and because of that we have arguably the best Olympian of all time – and if that doesn’t inspire you what will?

“I told him I’m living proof that however bad it seems, there is potential to come out the other side. I hope he doesn’t feel so isolated as he may have felt before, (Sir Steve Redgrave speaking to the Mail about talking to Darren Fletcher about IBD). 

Just weeks later he had 12 pieces of his bowel removed. Before going on to become the greatest Olympian of all time, while battling Colitis and developing Diabetes – something which some doctors said was because of his IBD medication.

I don’t care who you are, where you are from, or what you do for a living, you would have to be inhuman not to find this story remarkable, not to find him an inspirational human being. So read it, it could change your life and make you realise there is a light at the end of this very dark tunnel – it did with me:

http://www.dailymail.co.uk/health/article-2076304/Steve-Redgrave-misery-colitis.html

Sir Steve Redgrave rang Darren Fletcher to offer support

Sir Steve Redgrave rang Darren Fletcher to offer support

That’s why when I saw him stood outside Chester Town Hall waiting for the full Council meeting to determine the future of the student village, of which his sporting institute – The Redgrave Institute – was a part, I just had to go and say hello. I wish I could say that I told him how much of a hero he is to me, I wish I could say that he has helped me in more ways than he will ever know, and I wish I had said so much more. But I dissolved into a bit of a wreck…I think I got starstruck – you know that thing where you are overwhelmed and just can’t say anything. Ok, so I realised in a professional capacity that it wasn’t the time or place to talk about bowel obstructions and blood, poop and tears, and it definitely wasn’t the time to start gushing and crying. So I didn’t do any of those things – just as I didn’t get my boyfriend an autograph when I met Sir Alex Ferguson at the race course when we welcomed back the troops – it would have been unprofessional and inappropriate.

But I met him, I spoke (even if my voice did come out as a little girl’s giggly whisper) and I shook his hand. I even had my picture taken with him. He could have told me to do one, but instead moments before he needed to speak in front of a packed room about something very important he stood and had his picture taken with me. And yes he was a lovely man, very friendly, very approachable and very tall.

So I met a true hero of mine. And you know what, he’s not superhuman, he’s not a robot, he’s just a really nice guy who has managed to overcome all odds to do something truly incredible. I hope I meet him again and get to tell him all of this…but you know what I think it would embarrass him – I just hope he knows how inspirational he is.

Perhaps everyone should live by this mentality, and re-reading this story I just think I will:

‘I took the view — as I always did — that whatever the difficulty, someone has got to win the gold medal. Why shouldn’t it be me?’