Little me, my ostomy, and Ulcerative Colitis versus the Cardiff Half Marathon – I came out on top!


This slideshow requires JavaScript.

I can’t walk down stairs without wanting to scream out in pain right now.

Weirdly after running a half marathon at the weekend on Monday I felt surprisingly ok – but I was a little bit distracted.

Apparently the not being able to sit down comes in after two days and for the first time ever I can’t stop eating everything in sight.

Anyway, even though the pain is getting just a little bit on my nerves now, I am I beyond proud with what I achieved on Sunday.

I ran a whole half marathon without stopping, walking or really slowing down – yes me!

I finished the race in 2hr 14min and 11 seconds (those seconds make all the difference) which is awesome compared to the 3hrs it took all those years ago when I did the Great North Run at the height of an Ulcerative Colitis flare.

Funnily enough about half way through the Cardiff race on Sunday I started to really need a wee (well I thought I did). It got to the stage where I thought I might burst, but there was not a chance in hell I was going to stop and queue for a loo if it wasn’t my ostomy that was the problem.

I stubbornly carried on determined not to let needing the loo ruin my time – I mean after a life totally ruled by toilets I was not going to give a queue for the lavatory the satisfaction of ruining my pace.

Somehow despite a few hills (which I ashamedly and rather vocally swore at) and this desperation I ran the whole thing and even sprinted at the end, crossing the finish with a few fist pumps as I couldn’t believe I had done it.

What amazed me the most is how well behaved Winnie was. She didn’t start kicking off until about three hours later, when I was obviously ridiculously dehydrated and starving – it is often easy to forget I should drink more than the average person (and that doesn’t include wine).

Thank you to everyone who sponsored me, encouraged me on the way, and tried to make me see the challenge was possible – it was all so worth it and Crohn’s and Colitis have bit more cash from my pain.

Anyway, I appear to have caught the running bug. My mirror is slowly getting decorated with medals and I’m collecting running t-shirts at a bit of an alarming speed.

I might not look pretty when I run but I am starting to love it. I get time to think, get fit and often see stunning sunrises and sunsets. I also like the respect runners have for each other – a little bit like the hello walkers in the country feel obliged to give each other, like it’s part of the highway code or something.

So I’ve decided this time next year I’m going to do that marathon I’ve always talked about. I’m thinking the Chester marathon so I can see friends and family and have a bit of a celebration after.

I am the fittest and healthiest I have ever been in my life. To be honest I need to grab this chance while I can, as I’ve learnt how my life can flip when I put things off, and where better place to train than Cardiff Bay.

I know I need to work up to it, so my plan is to do two or three more 10k races and another half to prepare and then go for the big one. Don’t worry I won’t ask for sponsorship for them all, but the plan is by the end to have raised £1,000 for Crohn’s and to raise awareness of Ostomy Aid on the way.

People think I’m crazy, but you only live once – and I want to be able to say I ran a marathon!

Advertisements

Mentally, physically, emotionally how do I prepare for surgery? – doubt creeps in


On Tuesday I had my pre assessment to remove the last of my inflamed colon and make me and my stoma inseparable forever.

not my surgeon but an internet pic

not my surgeon but an internet pic

If I’m honest I’m not sure how I’m feeling. Last time I didn’t have to go through all of this waiting and worrying. I feel a bit like I’m awaiting sentencing for some sort of crime. Almost like being bailed by police and awaiting my day in court. I can’t stop thinking about what will happen on the dreaded day and the horrific recovery time following me waking up in that horrible hospital bed.

Let me clarify…I don’t think having an ostomy bag is comparable to serving a prison sentence, but from my experience the recovery period can be hellish, mind numbing and frustrating.

I’m feeling torn. I can’t wait for life without the constant pain of IBD – the blood, fatigue, sleepless nights and none stop illness – and I can’t wait to be rid of my leaking fistula, but in the same breath I’m apprehensive about life following my operation, frightened of the operation, waking up hooked up to monitors and machines, and even life never being free from my bag.

I left the hospital on Tuesday, not feeling reassured or positive, but feeling confused and slightly angry. While I was there, sat on my own, I was treated with and witnessed the normal incompetence you hope not to see in the people who you are entrusting with your life. If I wasn’t so confident in my surgeon I would have run out of there screaming, cancelled my operation and jumped on the next plane abroad so they could track me down. I was directed to departments I didn’t need to visit, taken for a blood test with a non nurse who dropped things on the floor before trying to put them in my arm, and then proceeded to put my extracted blood on top of a warm radiator – hmm I’m no medic but even I know that isn’t how it’s done!

Two and a half hours after walking nervously into the hospital I left to head back to my normal working day. I felt well and truly messed around, emotional and unsure. It took all my will power not to turn around, walk back to the desk and tell them I no longer wanted the op. Instead I composed myself and attempted to pull myself together enough to drive to Crown Court to get on with my job, shockingly enough I found it difficult to function for the rest of the day.

Tuesday was the first time I really started to doubt I’d made the right decision about having my ostomy permanently. Now I’m worried that I’m getting cold feet. I’m sure it’s just nerves talking but I’m really starting to wonder if I will regret my decision in years to come. I know my health really must come first, and I know it’s fear talking, but there are real issues which are playing on my mind. What if I come to hate my body; what if the scars are ridiculous; what if the fistula doesn’t go away despite the operation; what if I lose my confidence; what if something goes wrong and I end up unable to have children? I just don’t feel like these questions have been addressed.

Instead one thing stuck in my mind – it was something the nurse dealing with me said when I asked to speak to the colorectal specialist nurse to get some of these questions answered. She said: “she is currently dealing with someone who is having a serious operation” – then realised what she’d implied and made matters worse by saying “not that yours isn’t serious dear”.

Having my ostomy on a temporary basis has been fine. But I worry perhaps I have coped so well because there was always the tiniest option one day I might live life without a bag, if I have this operation that slight chance will be gone forever.

But now I’m used to Winnie and I’ve embraced her it would be silly to have her reversed, knowing that one day I would have to go under the knife yet again to get her permanently. If I don’t do this now I’m just delaying the inevitable.

I guess what I need is some advice. I need to know how to prepare myself for this massive thing I’m about to face. What should I do to get ready for my operation, mentally, physically and emotionally. Last time I was an emergency, there was nothing I could do but hope and pray, this time I have just over a month, yes a month packed with a trip to the Mirror and other exciting things, but a month to worry myself sick no less.

Please if you have any advice let me know, things to ease recovery, make me smile when I wake up and things to look forward to. I’m not going to live like a nun in the weeks before my operation, I want to calm down but still see friends and enjoy life – after all there will be months of sitting around bored shitless afterwards.

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.

A close call in court – the joys of court reporting with an ostomy and IBD


Before my operation my Crohn’s/Colitis made court reporting an almost impossibility.

Exactly!

Exactly!

I used to sit in agony in courtrooms wringing my hands together until they went white with pain under the press desk, jiggling my legs up and down to try to distract myself from the agonising need to go to the toilet – a need that never left me and always raised its ugly head at the most important moments of a case.

Covering the courts became both a joy and a punishment for me. The real challenge lay not in the reporting of the cases but the endless sitting and waiting, waiting, waiting for your case to come on. For most people the waiting would just be boring, for me it was agonising. While I was interested in the cases (if you have never sat in court and listened to mitigation and witnessed the general drama it is definitely a must – and is nothing like the telly) the constant need to race to the toilet every ten minutes made the waiting unbearable. I once dared to nip to the toilet after waiting through around three hours of driving offences, curfew amendments and restraining orders while feeling like my stomach was being ripped apart from the inside by a claw hammer. I remember racing out of the courtroom to the toilet – which is NEVER near enough to the courtroom you are in – thinking it will just be my luck if they finally hear my case now. I finally raced back to the courtroom five minutes later, still very much in the grip of the blood and pain, only to bump straight into the barristers for my case as they walked towards the Robing Room having heard the case – just typical.

Lesson learned – in the past two years I would rather have passed out than nipped to the toilet again!

Yes, I admit it the fear was always very real that I would pass out through the sheer effort of staying up right in my seat, and I am sure there were times that a jury member or even defendant has looked at me and thought ‘dear God that woman is about to collapse’. I lived in fear of an accident, and in even greater fear of someone making me move whenever a wave of pain flushed over me – when I was still I felt slightly more in control. And I am sure that all the press benches in the magistrates and crown courts that I’ve had the pleasure of sitting in have finger nail marks indented so far into the underside of the wood their imprints could almost be seen through the top.

So after years of covering court cases with the nightmare of my constantly flaring Crohn’s/Colitis, dealing with my ostomy while doing my job seemed like a reality walk in the park. Yes there was always the slight embarrassment of having my ostomy bag changing kit searched through by the security team, (and once or twice having to hand in my rounded cutting scissors at security as a ‘dangerous’ implement) but apart from that attending court was a relatively easy experience. So imagine my surprise when today my ostomy started acting up while I was sat in court patiently listening to each case and waiting for a jury to return. I won’t go into details but I could feel something was going on, and going on, and going on…and boy it just wasn’t holding back, in fact Winnie was going hell for leather. And for the life of me I couldn’t understand why.

So the next two hours were quite frankly hell. I quickly realised that Winnie was going to have to be emptied or we could end up with a pretty crazy situation in the courtroom. Basically Winnie was a ticking time bomb, and I sat sitting nervously trying to concentrate on my shorthand and what the counsel were saying to try to distract myself from the imminent explosion that was building up inside me. The pressure was unbelievable…but I was determined not to leave the room..my old fears about missing things while on the toilet returned and after grimacing through some of the worse pain of my life, there was not a chance in hell that I was going to miss the verdict because of my ostomy – yes, that is how stubborn I am.

Ok, the situation was made worse by my remaining colon continuing to contain active Colitis and me feeling the need to go all the time. The whole thing was unpleasant to say the least, and I just knew I needed to rehydrated and possibly stuff my face with marshmallows to stop this onslaught from Winnie or I would be in a whole new world of trouble soon.

The moment the judge broke for lunch was a blessed relief. I think I actually sighed audibly. As I stood up the weight of Winnie was horrendous and I had to hobble like I had bricks in my pants down the stairs, round the corner to the loo. Court toilets are never an extremely pleasant experience, but I won’t bore you with that.

By the time the day was over I had avoided several natural disasters and learnt a real lesson. While I was in agony with my IBD and the urgency and pain often led to accidents, I could often cope even though it meant me almost passing out with pain until I had a chance to reach a bathroom – with my ostomy this is not the case. There is no grin and bear it. Yes the pain is considerably less, yes the blood is there but it isn’t by the bucketload, but no I can’t stop the flow or ease the pressure when its started…if I wait, sooner or later she will fill up and then, eventually….BOOM! (now that would be a story)!

I will have to learn to cope with it. I love court reporting and I love my job, but I have to keep a close eye on things and remember I’m no superwoman, I’m still human…and, well, Winnie is just a stoma bag she’s not a miracle worker.

A 22 mile bike ride – jelly legs & a bruised bum & hitting streets with Police


Until today the longest bike ride I had done since my ileostomy operation was around three miles. And that had been a struggle. Come to think about it, three miles was probably the furthest I had ridden anything in years, and that was far enough for my skinny little legs.

A quick and much needed break - no I didn't fall off

A quick and much needed break – no I didn’t fall off

So this morning me and Andy (my boyfriend) woke up to a lovely autumnal morning. It was a little cold but absolutely stunning. I woke up fairly exhausted after spending the night on reporting duty trekking around Chester City Centre with some lovely police officers as they tackled drink and drug related crime in the city in the aftermath of the last race of the season. I was with them most of the night running around, trying to keep up with their long strides, and, well trying to not get lost in the crowds of unbelievably drunk women swarming through the city’s streets.

It is a year since I did a very similar operation with the police in Chester. I remember how exciting it was, but how the whole time I was watching the drug dog sniff out wads of cocaine from revellers outside bars and clubs I was constantly panicking about needing the toilet. You see I may not have been in the peak of one of my IBD flares, but I still needed the bathroom around six times an hour, or I would be left gripping my stomach in agony and struggling not to curl up in a ball crying like a baby. I remember managing to throw the pain to the back of my mind until the break – which was after at least three hours – before getting back to the station and locking myself away in the cell-like toilet, and silently sobbing in pain as I tried to ‘let it all out’ before we hit the streets (without loo breaks) yet again. Ok, I hear you say, I should have said something, I’m sure they would have let me pay a pit stop, but I couldn’t and wouldn’t slow them down…I absolutely refused to stand in their way.

townhall_policeThis year was different. With my ostomy bag I hardly had to worry. In fact I made it from 7.30pm until I go home at 11.30pm without having to empty or change Winnie. Yes I did worry I would be caught out, and yes I did worry about needing the toilet – but I don’t think I will ever stop doing that – I’m a bit like Jason Bourne these days when it comes to rest rooms. I did panic when Winnie started going into overdrive at the custody suite while I was looking around the cells where some of the revellers would be sleeping off their booze that night. But she survived and to my relief I didn’t end up having to change Winnie in a cell with no basin and a metal loo!

Anyway, after groggily getting out of bed we made the decision to go for a bike ride. Yes we realised that the 20+ mile round trip was a big ask after hardly stepping foot on a bike since my operation, but after traipsing miles and miles around Rome that didn’t seem like such a leap into the dark for my legs. Oh, and there was a pub to be stopped at on the way…so that helped as an incentive.

I didn’t regret it one bit. The weather was beautiful and cycling along the canal was both exhilarating and peaceful. At first we were forced to weave around walkers, dogs and fellow cyclists as we battled along the canal, but then we finally found ourselves alone, apart from a few ducks and MASSIVE dogs and the scenery became simply something else. For a couple of miles we battled on despite the towpath teetering out altogether leaving me exhausted from the grassy mounds underfoot, or wheel. Then realising I was never going to make it back if we carried on, we finally went onto the road and cycled the rest of the way to the pub…a thousand times easier, apart from the fact Andy got a puncture and we had to stop every-so-often for him to pump up his withering tyre.

The pub itself, The Shady Oak, was quaint. Set on the side of the canal the views were

Waiting patiently for food - I'm screaming inside lol

Waiting patiently for food – I’m screaming inside lol

breathtaking. However the service left a lot to be desired and they didn’t take visas or any kind of cards whatsoever. It was an odd phenomenon going into a cash only pub. That’s when we realised we had cycled 10+ miles and probably could only afford a handful of chips between us!! Luckily we had a bit more and managed to share a buttie and chips – from a ridiculous menu I must add, and a ridiculously long wait of around an hour and a half!

Anyway a few other things happened, but all in all it was a magical day. Now sat on the sofa I feel proud. Ok, I’m no Sir Bradley Wiggins but I dug deep when I thought I had nothing left and managed to complete a 22 mile bike ride, which is amazing when you think six months ago I couldn’t walk up 10 steps without having to stop for breath. I feel healthy, but wobbly. In fact I can’t walk at all without my legs shaking, and my bum feels like it has been head butted by a bull. But it is a good healthy sort of pain, one that I am sure will make me walk like a cowboy for a few days, but one that I can be proud of…this is a pain that means my fitness is coming back…so, I guess I like it!

I can’t wait to do it again. It’s happened, I’ve got the cycling bug!

The last stretch - oh and there is my bessie mate in the car next to me - small world lol

The last stretch – oh and there is my bessie mate in the car next to me – small world lol

Leaving on a jet plane – first trip abroad with my ostomy


So after months of waiting and excitement tomorrow is the big day. This time tomorrow

I am sooo excited - Just one cornetto

I am sooo excited – Just one cornetto

night me and Winnie, and, of course, my boyfriend Andy, will be sitting in a fancy restaurant drinking Italian wine and shovelling down plates full of spaghetti in Venice. I am so excited I can hardly think straight.

I’ve spent the last few hours panicking that I’ve forgotten to do something. I must have checked through my ostomy kit a million times and I still think I might be missing something vital. I have my doctors note for in case they refuse to let me on the plane, why they wouldn’t let me on I don’t know, but I’ve heard all sorts of horror stories, so I’ve decided it’s better safe than sorry. Especially as I’m flying home with Ryan Air, something which I’m dreading as everyone says they are the worse airline for dealing with people with medical conditions, especially ostomy and colostomy bags.

Perhaps they think I’m going to smuggle drugs inside my ostomy bag…best of luck to them if they want to check. Think if they ask to look I will down a can of coke as quickly as possible and eat beetroot, it won’t be a pretty sight either way.

All my supplies for the journey

All my supplies for the journey

Packing for the trip has been a bit of a nightmare. I think I might have gone a bit overboard with the amount of spare bags and products I have packed for Winnie, but I am terrified that she will leak every day and I will run out thousands of miles away from my supplies and out of reach of my delivery company. I did however manage to pack them in style. I went to Primark and bought a very cheap but pretty vanity case so that all my bags, sprays and wipes are now stored together in one place. It may take up a little extra room but it makes me feel so much happier to have them in a pretty case than thrown together in a plastic Tesco carrier bag along with my laundry and toiletries.

I’ve had a few problems with my travel insurance. My company down-right refused to renew my annual insurance or offer me an alternative policy because of my hospital admissions and my operation. This was like a slap in the face. I understand how they work but it is a kick in the teeth to have to go through so much pain all your life and then have to pay so much more than others who have lived without pain for all their lives. Anyway they let me take out a single insurance policy for the trip…looks like I’m going to have to win the lottery, or marry a millionaire if i want to keep going abroad.

Of course I am panicking about the journey. I love flying, but because of my Crohns/Colitis flying has never loved me. I hate the tiny loos and the idea that a frozen block of my bloody poop might kill a random sunbather as it falls out of the sky. I despise the fasten seatbelt sign, which always seems to come on just as I start to get the warning stabbing pains associated with a massively long toilet session. the same can be said for the ascent and descent, basically the times when no one can move are the worse…for an IBD sufferer it is hell.

I’m feeling apprehensive about the flight. I’m concerned about what I can and can’t take on with me. Luckily Charter UK (my delivery company) have provided me with a travel card which says – in multiple languages – that I have a medical condition and an ostomy bag and need to carry medical equipment. I have a feeling that this card might just save my life in these kinds of situations. My doctor has signed it and I have stored my sprays and water dispensers in a clear plastic bag along with my lip gloss..but just in case they are confiscated I’ve got a spare stash in my luggage.

Happy after a run in prep for our Italian holiday

Happy after a run in prep for our Italian holiday

It’s almost time to go. I’ve spent the last hour looking up restaurants in Venice, Florence and Rome (our three amazing destinations) which accommodate lactose intolerant diners. I can’t wait to tuck into some vegan ice cream in Rome…and scoff plates of spaghetti Bolognese. But more than that I can’t wait to do my first international stoma bag lady challenge – ride a gondola in Venice. It is meant to be very expensive, but I have always wanted to do it so it’s going to be really magical.

Me and Andy deserve a holiday. After everything that’s happened with my health, and the massively bumpy ride we’ve been on over the past year or so with my Colitis and my ileostomy operation, and even the stress of moving in the last few weeks, kicking back in Italy will be just what we need.

I couldn’t hope for a better boyfriend and I can’t wait to take him to the Ferrari museum to go on the F1 simulator. I also can’t wait to experience the romance of Italy and share it with Andy.

We are away for nine days in total. I will try to blog, share pics, tips and experiences when I can, but if you don’t hear from me just know that I will be having a heck of a good time.

Going abroad with my ostomy is a massive leap in the dark. It is, in itself, a massive challenge. We will be flying, getting on trains, eating foreign foods and attempting to communicate my condition and allergies in a foreign language and environment.

Yes I’m nervous…but am I excited?

Hell yeh!!

 

 

Climbing 275 steps – one giant leap on my road to recovery


I’m in a fair bit of pain as I write this. I can’t quite described what’s going on, or

A giant leap for Winnie

A giant leap for Winnie

comprehend what the problem is, all I know is that it is something to do with my fistula and that it is nothing like I have ever felt before. I’m not quite sure why it’s happening, or what’s happening, but I’m not feeling great. I’ll talk more about it tomorrow, but I thought I would mention it now as I’m drugged up to my eyeballs, so please forgive me if this post reads a bit like a druggie’s random train of thoughts…that would be the tramadol talking!

Ok, so it’s no Mount Everest but on Saturday I climbed 275 very steep and winding steps to the top of York Minster tower. Why? Because it is part of the 101 Visit England places to visit before you die…and because I have never done it. Over the years I have had the pleasure and honour of playing in the Minster a handful of times with a brass band I was a member of (have I failed to mention I am a band geek 🙂 yes I play the euphonium..an instrument which is about ten times to big for me and makes me look like a small child playing a giant’s trumpet), during an annual charity carol concert. Playing in the Minster was always an overwhelming and truly awe-inspiring moment; the music swells up into the rafters, filling every nook and cranny of the enormous building, rising up into the heaven’s, creating an ambience that seems to vibrate around your very soul. Something about hearing a brass band perform in a church is so humbling, and the sound, the pure, stripped-back sound of a single note echoing through the pews would send shivers through the soul’s of even the most cold-hearted person in the world. It’s times like these that I feel the most alive.

At the start, before I ran out of puff!

At the start, before I ran out of puff!

Anyway, despite having performed in the Minster I have never walked up the Tower. So after weeks of umming and ahhing about making the trip to York me and Andy finally jumped in the car and braved the trip on Saturday. It wasn’t the nicest day, drizzly and overcast to say the least, but that wasn’t going to stop us. I have to admit that this is one of the things I love about this blog and my 101 challenges, that I can’t just say ‘oh I can’t be bothered’ anymore, or ‘I feel to ill’..if we’d sacked the trip off on Saturday just because of a little bit of rain I would have felt that I’d not only let myself down but I would have let down you guys, and the rest of the IBD and ostomy community…ok, that might be a bit over the top but that’s how I feel, and it drives me to keep going even when I just feel like poo!

And that is the reason why me and Andy paid £15 each to get into the Minster and climb the tower. I know £15 EACH!! If it hadn’t been for the fact that I had to do it for my challenges I would have down right refused to go in, I would have turned around and walked out just for the shear principle that I will not pay that much to go into a place of worship. I mean I have travelled to some incredible places and seen some incredible churches including Notre Dame and the Sistine Chapel and I honestly don’t think I have ever paid that much to go into a church before…I know that it costs a lot to upkeep a church of that size, but seriously that is a disgusting amount of money to just walk around a building and climb a tower, which, I hasten to add was covered in graffiti the whole way up (how people have time to etch their names into stone while being herded up those steps really boggles my mind, they must take chisels and hammers!)

Anyway the walk up was horrific. Yes, I know that it has been months since my

At the top - upset about the netting, ruined the view

At the top – upset about the netting, ruined the view

ileostomy op but I am still not as fit as I was before my surgery, and the whole situation was made worse by the fact that there were around 50 other people staggering up the steps, so there was no time to pause and catch your breath. Seeing as I have a slight fear of confined spaces – I know it’s neurotic but I’m one of those people who burst out of a lift when it opens like its been on fire – it wasn’t an ideal scenario. I spent the whole climb up clinging to the railing and listening to the family in front rabbiting on and on at each other – I got the impression that someone was in big trouble! Winnie (my ostomy) was not having the best of days, but managed to stay calm enough not to have a leak as I tried to heave my tired legs up the hundreds of steps, very much aware that if I had a dizzy spell the rest of the people behind me would fall down like dominos back into the Minster. It wasn’t my favourite experience, but when I reached the top, exhausted and with legs shaking like jelly, the views where beautiful, (if not ruined by the barbed wire netting all over the place no doubt to stop jumpers) and I felt a massive sense of achievement that I’d climbed all those steps – ok, so it’s not that big an achievement but when you take into account that months ago I couldn’t walk to the toilet and back without someone holding on to me, it really is a giant leap in the right direction.

The sense of achievement and relief was short-lived when I realised I had to walk all the way back down, which is always harder than going up, and was made worse by the fact my muscles seemed to have locked and were frozen in the walking upstairs position. But at the end of it I might have felt a little tired and dizzy and my legs might have felt like jelly, but I looked a down sight better than a lot of the people who came red-faced and sweating down the steps, puffing and panting like they’d run a marathon – and I guess they didn’t have the excuse that they’d had major surgery just a few months ago.

MMM CHOCOLATE

MMM CHOCOLATE

After completing the challenge me and Andy treated ourselves to a cup of hot chocolate at a nearby chocolate cafe. I’ve been to York a fair few times but until this weekend I had no idea that York was most famous for its chocolate heritage. It seems that York is the birthplace of KitKat and other delicious treats that I unfortunately haven’t had the pleasure of eating in years BOO! I was so excited as this was the first time I had been able to have a hot chocolate in public since I was diagnosed with being lactose intolerant around four-years-ago. This cafe did dark chocolate and the option to have soya or rice milk instead of the normal dairy milk. It was an unexpected treat, and very rich and yummy…but as per usual Andy’s drink looked far tastier than mine and I have to admit that spoiled it a bit for me as the green-eyed monster raised her ugly head, and I spent the majority of the time in the cafe wishing I could have a sneaky taste of his very scrumptous looking white hot chocolate! – sometimes I despise being lactose intolerant.

We finished off the day walking through the Shambles, which despite the drizzle was a very enjoyable experience, ending up in a vegan cafe for a cake, as I wanted to have a little treat, which was an underwhelming and pricey experience. The pudding was mediocre and I didn’t like the very hippy atmosphere of the place (nothing against it, just not my cup of tea), Andy really didn’t like his coconut paradise cake…not really sure who decided paradise was the right word to describe it, more like bouncy sludge?

I really am tiny!

I really am tiny!

Anyway soon after that we were forced to give up and go home as my remaining colon started kicking off and my fistula started to cause me problems. Luckily that was at the end of a very full day, so the timing wasn’t too bad, although I obviously would rather it didn’t kick off at all.

My verdict? York is a beautiful place with stunning heritage, shops and scenery. Don’t visit the Minster unless you really have to see it, it is definitely a once in a life time experience. The views from the tower are beautiful, but they are nothing compared to other tall buildings across the world such as The Eiffel Tower or the Empire State Building. But, although it was a lot of money, I don’t regret it. I feel like I have really achieved something in my road to recovery and in embracing my life with a stoma, and shown that you really can do anything and that having an ostomy shouldn’t stop you doing whatever the hell you want.

At the Minster

At the Minster

Oh, if you go reward yourself with a hot chocolate. You won’t regret it!