Oozing skin, vomiting and hundreds of tiny dragonflies for VisitEngland challenge


I’m really sorry at how rubbish I’ve been recently. Everything seems to be getting on top of me. Work has been hectic, holiday planning has taken hold of every waking moment outside the office, and I have been feeling generally, well, crap.IMG_0677

I haven’t posted any photos of my skin over the past few weeks because it would have made you all violently sick. Three weeks ago my skin was so painful I couldn’t walk – my legs were covered in puss-filled boils. At around the same time my skin blew up so did the skin around my stoma, it became bright red again, like it had been burnt. I also got itchy rashes around my eyes, and my eye condition came back.

All in all I have spent the last few weeks feeling like a scale covered snake, well, a hairy scale covered snake – if that’s at all possible. I’ve been unable to shave anything, unable to exercise and unable to look after myself. I’ve felt sick, unattractive and damn right sorry for myself – and mega stressed with my job and my holiday planning.

I went to the doctors in hope of a cure – what I got was infuriating. The doctor, who is apparently a skin specialist, was gleeful at my pain. He could not have been more pleased that I was in agony. He smiled and laughed and seemed joyful that I had such an ‘unusual’ aliment. He seemed to want it to stay put, so that he could study it and poke at it – it was so insensitive, and is something that has happened far too often in my weird and wonderful years of living with the joys of IBD.

Anyway, I eventually resorted (well was forced by my boyfriend) to go to the out of hours doctors. I have no idea why anyone bothers with their real GP after that. The woman was amazing, and really listened to me, prescribed me antibiotics, and was incredibly sympathetic. I wish I could have her all the time, and, in hindsight I should have found out her name and swapped surgeries!

The antibiotics worked but left me feeling rotten. I threw up constantly, and was even on them during Andy’s birthday party. I felt awful. The weekend after I started them me and Andy headed to Milton Keynes so he could do his Spy Day experience I bought him for his birthday last year. We went down the day before, so we headed even further afield to have a go at one of my Visit England challenges – a list of challenges which feels like a massive effort but has so far had many surprising rewards.

Wicken Fen nature reserve was stunning. It was wild and raw, with never ending stretches of long grass as far as the eye could see. I was far too excited to see a dragonfly, and started peering around, shushing Andy as I tried to spot one of the tiny insects. When I finally spotted one I was overwhelmed. I was like a little child. We must have stood for half an hour watching two MASSIVE dragonflies flit about – I guess I wouldn’t have bothered if I’d have know I would have seen dozens by the end of the day.

IMG_0702it was an amazing day. We saw some beautiful insects, and even a deer, it wasn’t the most sunny day so we didn’t see as many dragonflies as we could have , but that didn’t matter it was still a breathtaking experience, and one I would never have done if I didn’t have this bucket list.

The only problem was that we walked miles and I suddenly got very sick. The antibiotics started to churn stomach acid around and I couldn’t go anywhere. I felt dreadful. Luckily I made it back to the car, but when we got to tea I was violently sick – not pleasant for anyone.

Luckily my skin has started to clear up. Which is fantastic as we are heading to America in a week’s time, and I’m so stressed I can hardly breathe. I couldn’t be more excited for the trip, but there is still so much to sort out both for the holiday and at work. I’m also (this is one for the girls) trying to figure out what to do about my bikini line now I have my stoma – should I brave it and get a wax or try the cream?

And I won’t start about the swimsuit nightmare I’ve been having!IMG_0679

Anyway I will blog again tomorrow about my preparations for the big trip! Hope you are all well.

Do you want to join in with the Visit England Challenges and find out more about Wicken Fen visit http://www.visitengland.org

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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!

 

 

Ostomy a fate worse than death – according to police it is!


So according to Cincinnati District 3 police I am ‘gruesome’, ‘disgusting’ and have been sentenced to a fate worse than death.

A fate worse than death - really???

A fate worse than death – really???

If you are a young person with an ostomy or colostomy bag it seems you’re unattractive, disgusting and won’t be able to get any girl or fit guy to go near you with a ten foot barge pole. You will be pointed at, laughed at, and be seen by the world as one big joke, whose life and partying days are over now that you have lost one of your vital organs and are having to spend the rest of your life wearing a bag of poo on the outside of your body.

Ok, before you all start throwing things, lighting torches and chasing me down the high street, these are not my words but the words of a very naive police force in the USA who have decided to use colostomy bags as ‘scare-tactics’ for teenagers to stop them playing with guns and well, basically, to attract coverage from the world media.

According to said police force, having a colostomy or ostomy bag is comparable to being paralysed. And, as if they couldn’t be anymore offensive to the millions of brave people who live everyday with an ostomy or colostomy, it almost sounds like this police force are saying that it would be better to die if you are unfortunate enough to be shot than to live the rest of your life with a bag.

The new programme, which will be rolled out amongst troublesome teens, gangs and young offenders in Cincinnati (USA), will see the at risk teenage boys shown ‘gruesome’ pictures of gun shot survivors with ostomy bags, to show them exactly how unattractive they will be if they are still alive after being shot.

In fact in a television interview Lt. Joe Richardson of Cincinnati District 3 police said this horrific statement, which made me want to throw my shoe at my new laptop and grab him by the collar and shake him for the shear stupidity and naivety of his pig-headed narrow-minded point of view:

“You’re not killed, but you’re walking around with a colostomy bag and that’s just not the way to get a girl’s attention by limping down Warsaw Avenue with a colostomy bag,”  said Richardson.

To say this is the wrong sort of message to be putting into the world about ostomy and colostomy bags would be an understatement. It would also be a massive understatement to say that I was offended by what Lt. Richardson has quoted to the world media. As a young woman with an ostomy bag I feel revolted, disgusted and quite frankly betrayed by this police force, who have decided to turn our life-saving bags into a device of torture, revulsion and torment.

Not that bad - i don't think anyway

Not that bad – i don’t think anyway

Of course I understand what they are trying to do…they are trying to make these troubled teens change their lifestyles before they end up dead, and they think that showing them pictures of young men who are just like them with ostomy bags will change their ways. They think that these kids will be revolted and disgusted by what they see. And perhaps they will, perhaps they will think twice, perhaps they will decide to get out while they can and avoid destroying one of their major organs by not getting shot and having to have their bowel removed.

But what about all those people, like me, like many of the brave people I have met online, who live everyday with an ileostomy or colostomy. What sort of message is this police force, through this campaign, giving to the world about us? We are brave people who have been through major illnesses; Crohns, Colitis, Cancer; or who have been in horrific accidents, and yes, some of us might even have been shot. But you know what? We have come out of the end of these horrific experiences alive and kicking, and that is mostly down to the life-saving operation and to our new friend – our bag!

To say that we are gruesome, revolting and that we won’t be able to find girlfriends or boyfriends because of having this essential thing, which, by the way if we didn’t wear we could be dead, is disgusting. Whoever came up with this campaign really didn’t think. They were so set on trying to get a message out there, to tackle a problem, to attract media coverage for their ‘amazing’ new programme, that they didn’t think about the consequences of their words and what they could do to all the young people who already struggle to live with their ostomy bags.

What about the teenage boys who are living in that state who have ostomy or colostomy bags, how are they meant to feel about this? As a 20-something-year-old living in the UK I find it hard enough some days to feel confident with my ostomy, to feel sexy, womanly and attractive. But imagine waking up one day as a teenage boy in a society where everyone judges on looks to find that your police force has branded you as an ‘untouchable’…and told your college, school, friends, teachers and all the gun-waving criminals that you are a freak and that you may as well be dead.

Do you think they will get girlfriends now? Do you think they will be able to enjoy the normal life that their bag has been allowing them to live, free from constant toilet visits, pain or even hospitalization? The answer is of course not…

It is taking a long time to change the general public’s opinion of colostomys and ostomys and articles like this make it even harder. Here, instead of talking about the bravery, the battles and the success stories they are painting these brave teenagers and kids who have had major organs removed as freaks and untouchables.

I for one will be writing a strongly worded email to both the police department and the television network to express my anger and disgust about this campaign and their lack of sensitivity towards a huge section of society.

http://www.wcpo.com/dpp/news/region_west_cincinnati/price_hill/cincinnati-police-hope-to-sway-teens-with-photos-of-colostomy-bags-paralyzed-shooting-victims

A grand day out! Sweltering heat, massive hills, art & giant marshmallows


Despite the sweltering heat and glorious sunshine, on Friday me and my amazing

Exhausted, sweating like pigs, but happy

Exhausted, sweating like pigs, but happy

boyfriend Andy (and of course who can forget Winnie) jumped in the car and submitted ourselves to over three hours of swerving lunatic drivers, scar-tearingly bumpy roads, and squinting to see digital road maps due to the bright sunlight as we drove to Bristol – all in the name of street art, and, well so that I could do one of my challenges.

The car journey, which as usual saw me scoff my own weight in haribo sweets (well, if you can’t do it on a car journey when can you?), was something of an achievement for me. After more than a decade of Crohns/Colitis, I am still getting used to the idea of not having to race to the toilet every five minutes doubled over in crippling pain. Of course, even though I now have Winnie I still have my moments, but compared to the urgency and, ahem, accidents, my toilet habits are a breezy walk in the park these days. Only 10-weeks-ago (before my surgery) the idea of even the shortest of car journeys sent me into a flurry of minor nervous breakdowns. For more than a decade of my life I would go to the loo at least five times before getting in the car, bob around on the doorstep impatiently telling people to “hurry up before I need the loo again”, and once in the car I lived in constant fear of traffic jams, as they meant it could be hours before the next service station and chance for me to go to the loo. Honestly my fear was so severe that break lights activating ahead on a busy motorway, or the word ‘diversion’, or even ‘next services in 30 miles’, sent my blood pressure through the roof…I would start sweating and, usually the moment such a delay occurred my evil disease would kick off and naturally I would need the toilet at the one time that there was no way I could go!!

Traffic lights used to send me into cold sweats, now I just sit back and enjoy the ride

Traffic lights used to send me into cold sweats, now I just sit back and enjoy the ride

So, understandably my relationship with travelling, especially in cars (don’t get me started on my humiliating experiences with public transport) is one that I associate with pain, fear and panic. So I was very surprised that despite the unprecedented heat, and the fact that Winnie was kicking off, and Oscar (remaining colon) was spitting mucus out of my stomach, we had an event free and rather pleasant car journey. In the three-hour journey we only stopped once, and that was more so I could empty my weak bladder than because Winnie was full – though I have to admit that, probably to the surprise of other nosey passengers staring in through the car window, I did keep checking Winnie for status updates every half an hour – better safe than sorry.

Ok, so what exactly had we driven all the way to Bristol for? 

As part of challenge #No33 I have to visit 30 things on the Visit England 101 things to see in England before you die, and search for Banksy’s art in Bristol is one of the 30 challenges I chose. So Andy very kindly booked us a hotel and agreed to drive us to Bristol for a weekend of traipsing around a city looking for art – something that isn’t really up his street (he’s more sport, I’m more culture – that’s the truth).

I have to say that I was over-the-topily excited about this trip. The night before I had spent hours looking on the computer at things we could do when we got to this city, which by the way sounded like a cultural Mecca. I can’t even begin to describe my excitement when I discovered that we would not only be able to search for the famous Banksy works, but scattered around the city were 80 giant Gromit statues, which had been decorated by famous designers, illustrators, musicians, and authors. Everyone from Michael Buble (yes I know, I have no idea how to get the accent over his name) to Quentin Blake, and the creator of Where’s Wally – I was like a little kid in a massive sweet shop, I even downloaded the special Gromit app (such a child #lol) – in the end we only saw about 10 but ah well c’est la vie!

Me & one of the 80 Gromits

Me & one of the 80 Gromits

So after checking into the hotel (we got an excellent last-minute deal on the Doubletree – we’re not that posh!) and a quick change later, me, Andy and Winnie hit the streets of Bristol with one aim – to find something to eat. We quickly stumbled across our first Gromit, which was just outside the hotel, before heading down to the Quayside where the whole of Bristol appeared to have gathered for a drink. I won’t get into it, but after waiting for rather a long time outside a well-known chain Italian restaurant and being ignored, we decided to spread our wings and explore further afield, which with Winnie behaving herself was not so much of an issue, or so I thought until we climbed the steepest hill in the world to get to Cafe Rouge.

On the way we spotted our first Banksy – hurrah! So a couple of pictures later and we kept

The first one!! SHOCK and RELIEF!!

The first one!! SHOCK and RELIEF!!

climbing past the rows of nightclubs until we got to the restaurant, by which time we were both sweating buckets and gasping for a drink – you could say we had earned our dinner! (we went to Cafe Rouge because I had a voucher and all 101 of these adventures combined is not going to be cheap so best to scrimp and save where possible) It was a lovely – well the same as any other Cafe Rouge – restaurant, which had an amazing view of Bristol University, which we both mistakenly mistook for the Cathedral until we explored later that night. The only downside was the gang of over-excited and tipsy graduates who were squealing their heads off, singing old kid TV theme tunes, and kept shouting loudly in Spanish – which made me think they had been language students. By the time we left I had a very bad headache, but had enjoyed my first salad post surgery 🙂 and Andy had indulged in his  ‘never let him down’ dish of duck.

At the restaurant - we only had one drink each - i promise!

At the restaurant – we only had one drink each – i promise!

Even though both of us only had one drunk we were a little tipsy and exhausted and decided to call it a night (we’re WILD), but on the way back to the hotel we stumbled across a frozen yogurt take-out that was still open at 10PM WOW!! And it did lactose free frozen yogurt, we just couldn’t say no to that!!

Anyway the next day I might have had a little strop after not being able to find a Starbucks immediately to satisfy my morning coffee urges…and poor Andy had to put up with my having full-blown paddies as we traipsed up that bloody hill again to get a frapaccino in the now unbearable heat. I was a little happier when I’d got my coffee, I think the ice and the caffeine combined with a little bit of air conditioning really helped to cool my rapidly spiralling out of control totally over-the-top temper, so then we could get on with what we had come to see – the Banksy street art.

The only problem is, finding a Banksy in Bristol is like finding your keys when you’ve lost

Yep another one...nightmare to find

Yep another one…nightmare to find

them, you can’t find them when you want to, but you stumble across them unexpectedly when you’re no longer searching for them. We found that first one quite by chance, and the second one (the girl with the balloons) when we turned the corner after our meal. But after that it became much much more difficult. Traipsing through Bristol, up and down the steepest hills I have tried to tackle since my surgery in temperatures reaching 30c was not easy at all. We explored the roughest parts of the city, where drunk people gathered in the streets, and went up alleyways stinking of spray paint as Andy’s special Iphone ap directed us into possible drug dens in search of the best street art the city had to offer.

Three hours later, exhausted, sunburnt, dripping with sweat and feeling like I had just run a marathon with lead weights attached to the backs of my knees, I gave in and decided I simply couldn’t search any longer. My legs felt like they were going to give way from under me and I was sweating from places I didn’t know existed. As we collapsed in the park under the shade next to some teenagers who were smoking some very funky smelling weed, we took our shoes off and gulped down the water, before reflecting that despite the temperamental

WHOOP another Banksy

WHOOP another Banksy

iPhone ap we had done rather well (even if one of the Banksy’s had disappeared by the time we had trudged miles to get there (some idiot painted over it no doubt)), and had not only seen some of the most WOW street art in the UK but also ventured where few tourists had ever dared to venture before.

Winnie was surprisingly well-behaved the entire day. I think, like everything, in the heat she just gave up, decided there was no point and declared the day a stoma holiday! So we sat and had some free fruit in the park and enjoyed lapping in the Pride festival atmosphere. I had never been to Pride before and it was an incredible event to experience, with the hot weather and music blasting people where scattered all over the lawns and grassy embankments just kicking back, enjoying beer and basically enjoying life.

I had really wanted to watch blast-from-the-past boy band Blue, but as we joined the

Another Banksy - squee!

Another Banksy – squee!

packed crowds I realised not only was I not going to be able to see them but Winnie was likely to get crushed in the process. Now I like Blue’s music but not enough to end up with a dented stoma! Anyway my decision not to see them perform was sealed by the band not coming on stage at the correct time, we waited 20 minutes and then with the onset of heat exhaustion decided not to ruin an amazing day by ending up in a&e and decided to call it a day.

We made it back home to Andy’s country home at around 8.30pm after stopping for supplies, once home we grabbed showers, tucked into a

AMAZING ART

AMAZING ART

yummy tea, and passed out. I woke the next day to my muscles screaming like they had been put through one of those Iron-man challenges and spent the rest of the day walking like a Cowboy (people must have thought I had had far too much fun!). So due to my exhaustion we spent most of the day sunning ourselves in the garden, Winnie had a few moments, but after being well-behaved the day before I forgave her. I even treated her to giant toasted American marshmallows on the BBQ later that night – MMM the best medication EVER!!!

So if you’re looking for a good weekend of exploring and you love art, head to Bristol. It was nothing like what I expected…it was a fusion of the old with the new, the traditional with the modern, obscure and at times terrible and verging on vandalism graffiti. It was one of the best and most random weekend’s me and Andy have had, and the best me and Winnie have spent together. So give it a go – a word of advice though, don’t go during a heat wave and expect to get much done!

The giant marshmallows - such a treat MMMM

The giant marshmallows – such a treat MMMM

the giant marshmallow have made me soooo happy

the giant marshmallow have made me soooo happy

If you didn’t see it on yesterday’s post below is the slide show of pics of the trip to Bristol. ENJOY!!