Christmas time with a Stoma – warning it’s rogue nut season 


       
 It’s that time of the year again, filled with too much drinking and stuffing my face with really rich food until I feel basically ill and need to out on my Joey from Friends pants.

I adore Christmas and love everything about it, but Christmas throws a lot of curve balls  in the way of my Stoma and often leaves me waking up with far more than a hangover.

In December everything I normally actively avoid eating seems to hide itself in every day food. Nuts and dried fruit appear everywhere at Christmas; hidden amongst sprouts, in stuffing and in a whole array of amazing treats and desserts.

Most of the year I would turn down nut laden goods (no matter how tasty they appear) as I fear the blockage, sickness and general yuck they cause, but something about Christmas makes me throw caution to the wind and I seem to have a devil on my shoulder shouting “bring on the nuts, who the hell cares? – it’s Christmas”!

I have a very adult taste when it comes to food: my Stoma does not. 

Winnie is like a toddler, she hates green stuff, nuts, wine, veg, but she loves a good ‘take it out of the freezer and stuff it in the oven meal’, you know anything that involves chips and weird breaded animal shaped food. 

I live off spinach, olives, cucumber, basically everything she simply can’t cope with (so I live with a lot of tummy ache, funny farting noises coming from my bag, and green poop) but present her with a sprout, coconut or a nut and she has a total fit and throws all her toys out of the pram totally big time.

Last year was probably the best Christmas of my adult life. For the first time I can remember I enjoyed turkey and all the trimmings without the constant pain of Ulcerative Colitis. I managed to sit through almost the entire meal (yes all the courses), unwrap all my presents and even join in all the family games with only a few visits to the bathroom.

It was magical. I don’t think I have ever been so happy. 

But, despite the pain free Christmas, there were still some issues especially around the dinner table. I learnt a few lessons the hard way, mostly not to get carried away with the festive celebrations, office parties and late night drinking, and to avoid certain foods at all costs, no matter how tempting they might be.

This year I will be avoiding, sprouts, chestnuts, cranberries, Christmas cake, green beans, and many more little treats. 

A word of advice, if you have an ostomy and don’t want to be in agony for hours, don’t eat sprouts.

 I know many people would be relieved to find out they can avoid the little green balls, but I’m quite gutted about this.

 The first Boxing Day after my operation I spent an excrutiating couple of hours passing what felt like a giant bolder through my stoma. Somehow, despite obviously chewing it to shreds, it seemed to reform in my bowel and tried to pop out whole – imagine my shock! 

Blog post: I can’t eat sprouts 

This year I have no doubt I will learn even more lessons about my ostomy, and how bloody picky she can be. 

But either way I’m going to give into the devil and eat what the hell I want – the detox and Winnie’s much earned break can start in the New Year, after all that’s what January is for! 

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Post festive blues – an over zealous fistula, too much pudding and impetigo


It might be three days after Christmas and most of us are finishing off our turkey and drowning in the reality of eating far too much sugar, fat and general stodge, but I’m determined not to let Christmas go. I don’t care if it’s days after the real event, I just can’t seem to accept that Christmas is over. It was over far too quickly for my liking. There wasn’t any snow, just rain and wind, and there wasn’t even slightly enough carol singing to satisfy my never ending need to sing loudly and off-key while jumping around like a teenager.

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This year I want to make up for all those years that Christmas has just been another meal to try and sit through while my IBD kicks off. I want to get back the Boxing Day spent in a gastro ward with prisoners (literally) keeping me awake while bagging their handcuffs against their hospital beds and feeling like curling up in a ball and dying as a Scrooge-Esk nurse places a nil by mouth sign over my bed (I swear with a naughty twinkle in her eye, as if saying no more turkey for you) before racing off to tuck into the giant mountains of chocolates at the nurses station! Post Christmas has always meant two things – regret that I didn’t squirrel away more food for my enforced fast and an insane longing to be left very much alone.

Right now we are smack bang in the middle of that period where I never have any idea what to do with myself. It’s that bizarre period in between Christmas and New Year where all you can really do is: a) eat yourself into a new dress size; b) join all the other manic people and hit the shops. Today we tried to hit the shops. I won’t be doing it again. Firstly I seem to have caught a cough that makes me sound like I smoke 100 fags a day, my impetigo is back in my nose making me feel like I’ve tried to stuff burning coals up my nostrils, and my fistula is going mental. I just couldn’t cope in the crowds, I felt like I was going to have a panic attack. Indeed I felt the normal hot waves and flushes of panic I get when my Crohn’s/Colitis is about to have an incident. I tried looking around the shops, fighting the old woman hogging the Warehouse rail filled with dressed far too tight and young for her age, but ended up tensing my butt cheeks so hard to stop an unexpected escape of bloody mucus I must of looked like I was trying to crack a nut. I was determined not to loose sight of the dress I wanted to grab and not miss it by racing to the loo. I would have won the dress with my constipated elf impression too, if I hadn’t felt like I was going to pass out, and, due to my butt squeezing exercise, the hot mucus started to squirt out through my fistula causing me to almost double over in pain….hobbling out of the store I must have looked like id been punched in the stomach and kicked in the shins during a bargain bust up.

I think it’s safe to say I won’t be joining the throngs again. I arrived back home with two pairs of high-waisted jeans for a bargain price, but was so exhausted I collapsed onto the sofa. It seems so chaotic following the amazing magic and tranquility of the past few days enjoying Christmas and watching War Horse with my family…I’m going to do the rest of my sales shopping from the comfort of my home within metres of the loo to avoid anymore mucus moments.

I’m starting to think about next year and what I want from it. This year has been a mixed bag both health wise, emotionally and career wise. I’ve been through more pain than I could have ever imagined, I’ve been to hell and back, I’ve wished for death and I’ve come out of the other end. At the same time I’ve made some incredible friends, been on some stunning holidays, eaten like a King, swum, ran and jumped like an idiot. My weight has plummeted and then slowly built back up. I’ve been off work for half a year and then come back to two awards and recognition for a job well done. I’ve loved, cried, howled and giggled my way through 2013… but now it’s time to shake it all off and look forward to 2014.

Next year I will finally wave goodbye to my mucus fistula (fingers crossed) and the pain in the arse which is my rectal stump. And, if all goes well, I will finally slam the door in the face of the illness which has so far tormented me like a little snotty gremlin hiding under my bed for my entire life. When this happens the world will be my oyster, there will be nothing except myself holding me back. I will be able to go as far as I want and achieve whatever I want to achieve. But to do that I know I have another bout of horrendous surgery, another lengthy period off work and another painstaking recovery to go through.

Perhaps that’s why I feel so down. But I think it’s more likely to be the festive blues. Time to get my guitar out and trying to strum away those dark skies with some tuneless random cords I think 🙂

After all Christmas isn’t over yet…. As a friend said “we’re only on four turtle doves in our office”.

Turkey and all the trimmings – my best Christmas since being diagnosed with IBD


Right now I’m sat on the sofa wrapped in a blanket wearing my Christmas pjs and feeling very content. It’s Boxing Day evening and I don’t feel like I’m going to explode through over indulgence, throw up or gripping onto my stomach through agonising IBD pain. I simply feel happy. I honestly can’t remember a single Christmas where I have felt this good before. It’s amazing.

Santa's been

Santa’s been

For a long time I’ve not really appreciated the joy of those few days off over Christmas. Not because I’m a Scrooge, and not because I hate turkey, but because I know that I will be ill. Something about the festive holidays sends my body into meltdown, and it doesn’t matter what I do (not drinking, exercising and having early nights) I always end up so ill I need to go to hospital – I think its the excitement of Santa coming.

This year Christmas has been perfect. I’ve enjoyed every second, I even managed the drive between families without a hiccup. For the first time I can remember since being diagnosed with Crohn’s/Colitis I’ve been able to sit through the whole of Christmas dinner without having to rush to the loo in agony ever other mouthful to pass bucket loads of blood or throw-up the food my poor mum slaved hours in the kitchen making me. I even made it through the board games and managed to spend time with the kids first thing in the morning without needing to rush back and forth to the loo to avoid any embarrassing accidents.

Me (mental hair) and the kids on Christmas morning

Me (mental hair) and the kids on Christmas morning

Ok it wasn’t all plain sailing with my Stoma. Some of Christmas dinner really didn’t agree, but there again what does it matter if I see my sprouts and stuffing a second time – it was worth it. Lying in bed in my childhood room on Boxing Day morning the pain was pretty bad as nuts from the stuffing and cranberry sauce attempted to force their way out of Winnie – it hurt pretty bad – while my fistula kicked off and leaked again – but that happens all the time so what the hell I can put up with that. I also had to constantly empty Winnie (ostomy bag) today, she wouldn’t stop. I’m sure that’s the luxurious food but she really really wants to remind me she’s still here – I guess she’s saying STOP EATING…JUST STOP!

On Christmas Eve I finished work and me and Andy raced off to Barnsley to see his sister Abi, her husband Rob and the kids Jake and Isabel. I’ve never spent Christmas with kids; never seen the excitement I felt as a child trying to sleep on Christmas Eve; never been woken by a little person peeping their head around the doors bouncing with excitement about Santa having come. It really has opened my eyes…children remind me that Christmas is magical.

We all curled up on the sofa and watched the Grinch in our festive pjs. I avoided the popcorn – which I’m sure would be even more painful than sprouts swallowed without chewing at the work meal. Then, once we’d tried to get the most excited child I’d ever seen get to sleep, we got our tea down us and started to help Santa deliver his presents. It was awesome. I won’t let you into all of Santa’s secrets, but let’s just say he brought in an awful lot of sparkly snow on his boots when he came down the chimney in the night.

I drank too much wine and woke to a little head peeping round the door asking to come in. In the past I would have been too ill to comprehend anything let alone to cope with the most excited child I’ve ever seen… She was pretty much shaking with excitement. I’ll never forget the look on her face when she got down the stairs and saw mountains of presents with big snowy footprints all around them – it was the look of pure joy. The part in bed was pretty bemusing – she recited the whole of Goldilocks And The Three Bears – totally random but with fantastic enthusiasm.

Argh a small person

Argh a small person

We spent the morning in our pjs unwrapping presents and playing games, and for the first time ever I didn’t miss a second by being stuck on the toilet…It was a dream come true. We then headed back on the motorway to my parents house in sunny Rawtenstall. We were both shattered. I honestly don’t know how mums and dads across the county get through Christmas Day – it’s exhausting. I seriously don’t know how my folks did it, it’s admirable really.

Arriving at my house I was excited but smelly. After a shower we unwrapped our presents in true Flint style – me tearing into layers if wrapping paper at the speed of light like a frenzied animal, while my sister took each one out carefully and examined, read, played with it! My parents got me everything I wanted and more, but the stunning coffee machine stole the show – complete with hundreds of coffee pods and all lactose free for me and Andy to enjoy (from now on it’s going to be very sophisticated at our flat). They also made us and amazing hamper full of dairy free goodies, smellies and homemade wine etc – I’m going to be massive if I’m not careful! My sister got us everything we need for our 24hr movie marathon – the complete Lord of the Rings blu ray box set and loads of alcohol.

WOW

WOW

Andy stole the show with a beautiful guitar. I had asked for one so I could start learning for my challenges, but I never expected he’d get me one. It is stunning. I’m afraid I know nothing about guitars, but my dad was really impressed, so it must be good. He also bought me the Harry Potter box set – another one for our movie marathon – I’m overwhelmed – I’ve obviously been a very good girl this year.

Anyway dinner was everything I hoped for and more – delicious food, amazing company and so much warmth it was almost stifling. My mum is an amazing cook, the sprouts were made with chestnuts and bacon (she even cut them in half so they didn’t block my Stoma). And she made quails egg scotch eggs for Andy – delicious! Pudding, a dairy free sticky toffee, was heavenly, and for the first time I left the table after Christmas Dinner full but not sick and about to explode.

First time I've drawn in ages - success

First time I’ve drawn in ages – success

It was a magical day, made better by seeing the whole family, both mine and Andy’s. I would go as far as saying that as an adult it was “the best Christmas ever”. I hope yours was to…

 

Tomorrow – boxing day and horses:

I can’t eat sprouts & other Scrooge moments for ostomates


On Saturday morning I work up feeling like a wet dog had been lying on my face. My

NEVER AGAIN

head felt like a gnome had been bashing it with cymbals, my stomach like I’d drunk a litre of washing up liquid and my mouth like I’d spent the evening drinking washing up liquid and eating cotton wool. God knows the shock my partner must have had when the turned to see his formerly dolled-up girlfriend transformed into the creature from the Black Lagoon over night, with crazy eyes, hot breath and panda eyes (not to forget the Sonic the hedgehog hair) – I must have been a stunning sight.

Yes Friday night was the legendary Work Christmas do, and I was waking up with my normal horrific post surgery hangover which leaves me wanting to go to Tesco and throw every bottle of wine out of the window.

Since my operation alcohol doesn’t taste the same, it isn’t worth the pain or the expense. Ok I still love a nice glass of wine (or 3 I hear you yell) but I pay the price. Alcohol in any form has started to have a really schizophrenic impact on my body – some nights I only have to sniff a glass of wine and I’m wasted, others I can drink a fair amount and just be a little merry and giggle, other times I rather humiliatingly fall fast asleep – but really it doesn’t seem to matter how much I inhale I still feel like I’ve bathed in a vat of vodka the next morning.

Ok, I’ve never been a great drinker, but this is starting to get ridiculous. These days I’m more careful than ever, and I think that’s mostly due to the fear of having to change my ostomy bag when I’m so plastered in can’t see my own hands. I also find alcohol can have an undesirable effect on my Stoma output, either turning everything to water or stopping it working all together. Also changing your bag while feeling like puke is never desirable – mistakes have been known to be made.

The girls

The girls – yes i didn’t look that orange at the start of the night

Anyway I was in pain…a lot later I figured out a substantial amount of the agony in my abdomen wasn’t drinking. My Stoma felt like it was trying to pass a small boulder. After about 20 minutes of writhing around I inspected it and much to my surprise discovered a whole sprout, which appeared to have re-formed inside my digestive system. Ouch! And it wasn’t th only one.

So bah humbug I can’t eat sprouts, that’s a fact not an excuse. I bet all kids would love to use that one, but it’s a sad fact that I actually love sprouts – this one I would rather have not seen again!

With Christmas coming up I’m starting to think what other festive delights I might miss out on. What else will be missing on my dinner plate. At the Christmas do I indulged in a turkey dinner – the next day I discovered the hard way that cranberries, stuffing and nuts could join sprouts on the no go list. I’m also thinking red cabbage, cabbage and chestnuts will be a bad call….but we’ll see how daring I am on the day.

Living with an ostomy is about experimenting. Just like living with IBD everyone’s body and illness reacts differently. I know people with Crohn’s Disease who can scoff scorching hot curries, down pint after pint of beer, smoke and god knows what else without any impact on their day-to-day illness. Others struggle with every morsel of food placed in their mouths. I’m more among the latter, but I can get away with more than most – mine is brought on by pretty much nothing at all, just when it wants to ruin my life (and I’m not being overdramatic).

I know people with ostomy bags who eat raw food all day – I struggle with spinach but I love it too much to stop. I know one day my love for mushrooms will cause a very problematic blockage, and I have learnt the importance of thoroughly chewing. But despite this things still come out whole – it literally makes no sense whatsoever.

With a lot of parties, rich decadent food and drinking coming my way I’m going to have to be careful. I’m already ill enough. My colitis is awful at the moment and my fistula is in overdrive, surgery is looming and I need to look after myself. On thing’s for sure I don’t want to be on a pure liquid diet this Christmas and I sure as hell don’t want to spend Boxing Day in hospital.

I don’t want to see another whole sprout which has already passed through my stomach acid unscathed again. So long oh humble sprout may you never grace my plate again.

Dashing Santa style – racing for new born babies with a Lego man in tow? Challenge #no53


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Not many people know this but I’m a miracle. That might sound incredibly big-headed, but I really am a miracle. You see I was born incredibly premature. So premature that I was incredibly ill…in fact I died a number of times. Before you ask I don’t remember anything about it, I didn’t see the white pearly gates or a light at the end of the tunnel, but it happened.

I was born dramatically early. So yes I guess my life continued the way it would stay DRAMATIC! They do say start the way that you mean to go on – I undoubtably did that. I was born so small I fitted into the palm of my dad’s hand with room to spare (unbelievable, yes I can’t imagine it either) and was the smallest baby in Burnley General – I even appeared in the paper with smiling school children holding me (yes a little bit weird, but cute).

Yes being small is cute, but it presented its problems. In my eagerness to get out into the big bad world I didn’t give my little body enough time to develop, meaning that in the rush to get out my body simply didn’t finish the job. The result was a I closed hole in my heart valve. Obviously this meant I was fighting from the very second I was born….something it seems I’m really very good at!

Ok, let’s be serious a moment, because really this is no laughing matter. I don’t remember anything about any of this, my little body was broken, but really I had no idea, but my poor parents did. I can’t imagine the pain of having to watch your baby suffer, to not know if they are going to live or die. I can’t imagine having the baby I just gave birth to being snatched away and the pain and anxiety while waiting to hear their fate, while I should be holding my child and celebrating bringing them into the world. It must have broken my parents’ hearts.

I’m alive today because of a number of people who simply wouldn’t let me go. My parents, the doctors and nurses, and obviously my very stubborn little self, who fought back from the brink and mended over night (the start of a trend throughout my IBD and adult life) just as all hope was lost. But I’m also here because of my late Step grandad Nick; an amazing man who bought me an incubator to keep me alive because the hospital didn’t have one to save me. He died a few years ago, but I like to think he would be proud of what I have done with the life helped me to experience.

Anyway, why am I talking about this? Because today me and Andy (my boyfriend) ran the Chester Santa Dash to raise money for a number of charities; among them the Baby Grow Appeal. The BG appeal is to try to raise ÂŁ3 million to build a new neonatal unit at the Countess of Chester Hospital to provide a more private place for families going through what my family went through; a place where support can be given to those who are going through uncertain and emotional times, and where the best care can be given to babies who are clinging to life and fighting with every little bone in their bodies.

Ok, you all know The Countess isn’t on my Christmas card list due to everything that’s happened over the years, but who cares when they are trying to achieve something so important, which could save lives and give comfort to so many people in such difficult times. So with that in mind we donned our Santa suits to race 4k around the city with hundreds of other Santas.

But being me and Andy we couldn’t do it without a bit of a twist, so Andy wore his giant Lego head and I donned my Press jacket and we suddenly became the stars of the show. We ran the whole thing, even though Andy could hardly see. We were a massive hit…well Andy was. I think he has started trending on twitter and is probably in hundreds of photos (there’s even a Where’s Wally style shot on the Dee 106.3 Facebook page). It was an incredible experience, and despite stinking and being bathed in sweat by the end we were incredibly happy – and even got interviewed by Dee 106.3 an odd experience with some bizarre questions which I didn’t handle that well – I’m used to the other side of the camera really!

So that’s another challenge down – what next?

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