Night out with my ostomy – tricky leaks, revolting loos and challenge number 30


It’s official…I just can’t party like I used to. I just don’t bounce back anymore. The days where I used to stay up all night bouncing around clubs, swigging back cocktails and playing drinking games before heading to lectures at 9am after a couple of hours kip then heading back out for another late-night session, are well and truly behind me.

First night out with the girls since op!

First night out with the girls since It’s official I’m getting old.

More than 48 hours have passed since I dragged myself into bed with tired eyes, tired feet and an even heavier head than usual after getting in from an awesome yet crazy night out with the girls, and I still feel like I’ve been hit by a bus. I just don’t seem to recover the way I used to, which would be fine, but I really didn’t drink nearly enough to warrant this kind of three-day hangover. And to make matters even worse Winnie (my stoma) has decided that she officially hates me (I think it has to do with all the dancing, sugar and possibly lifting my mates off the slippy dance floor) so much that she keeps having sneaky leaks totally ruining any clothing, bedding or flooring that is unfortunate enough to be close by at the time.

Saturday night was Rhian’s 30th birthday bash. And what a bash it was. Chips and champers at my old house (Ri and me lived together) before getting into a massive limo, which just needed P Diddy dressed in a fur coat to make it into pimp my ride, and heading for a night out in Liverpool. This was my first big night out since my op, and I was excited and I have to admit rather frightened by the prospect of subjecting Winnie (who has been leaking a lot recently) to heaving crowds of drunks, dirty toilets in clubs and my insane style of dancing. As we climbed into the limo I fell back into clutching my stomach protectively, as if trying to shield Winnie from any dangers the outside world might present, because you never know when someone’s going to charge at you or punch you in the stomach right?

A NIGHT OUT IN LIVERPOOL IS PART OF CHALLENGE #NO 30 – the VERDICT…AWESOME, BUSY, LOTS OF VARIETY, BUT NOT AS GOOD AS NEWCASTLE AND APPALLED THAT THERE ARE NO PUBLIC TOILETS AFTER 2AM (well not where we where, before my op – with IBD – this would have ruined my evening) 

PIMP MY RIDE!! I don't always travel in this much style btw

PIMP MY RIDE!! I don’t always travel in this much style btw

At start of evening I couldn’t keep my hand away from Winnie. As the crowds got bigger and the people around me got drunker and drunker, with crowds of girls tottering in their sky-high heels, I became more and more anxious about Winnie getting hurt. I could just imagine me flat-out on the floor, with some drunkard sprawled across me, legs flailing everywhere, with all their weight squashing Winnie into the dance floor. I could also imagine the inevitable trip to Liverpool’s A&E department, and I have to say I was determined not to add it to my list of A&E’s I have visited.

I'll have a water, waiting for the limo

I’ll have a water, waiting for the limo

Having had some champers in the house and limo when we got to Liverpool I decided to grab my second glass of water for the evening. The bar tender looked at me like I’d walked into his club, squatted down and done a number 2 on the floor when I asked him for the free shot we had been promised by the scouts outside with a glass of water. He looked revolted. How dare someone ask for H2O – I honestly thought he was going to jump on the bar and start shouting H20 HELL NO again and again Cayote Ugly style. He responded by telling me that you had to buy a drink to get the shot, but something about the look on my face must have shushed him into submission, and he handed me a tap of the worst tasting tap water I have ever drunk.

While the others drank and danced I weaved my way through packed crowds shielding Winnie with my hand of steel in search of the toilets so that I could check that she was behaving herself. It was only about 10.30pm and the scene in the toilets could only be described as carnage. The toilets were so poorly lit it was like trying to check my bag in a power cut. But even the bad lighting couldn’t disguise how revolting the place was. I don’t know what had been going on in those toilets, but it was like a chimp had gone mental throwing toilet roll all over the place, leaving used tampons, tissues and god knows what else strewn all over the floor. The result of this disgusting childishness was that although Winnie was full there was NO toilet roll in site, so despite the slight leakage and the impending explosion there was no way I could change her, and even if there had been, with the piss on the floor and disgustingness all around me there was NOT A CHANCE IN HELL I was about to play around with an open wound and a protruding organ in this loo…that was unless I wanted to end up in hospital on a drip for the rest of my Summer. Instead I fumbled around in the dark, using parts of a spare wound dressing to secure the edge of my bag, while drunk women banged on the door and shouted for me to hurry up…ARGH!! (I felt a little bit like a Blue Peter presenter making Tracy Island out of sticky back tape and toilet rolls, but under a lot more pressure).

Some of the night's shenanigans

Some of the night’s shenanigans

I have to say that I was amazed that after that hasty patch-up job my bag survived the night, but it did. And the toilet situation improved. Luckily the rest of the club’s had those women in who try to sell you lollipops and squirts of perfume. Yes, they annoyingly shout unintelligible things like market stall traders while your on the loo, making me jump while I was trying to empty my ostomy bag, but at least they keep the toilets clean and make sure there is an endless supply of loo roll – so I worship them!

The rest of the evening saw me advance from tentative shuffling to full on dancing the night away. Ok I restrained myself from doing any ‘how low can you go’ or the bumping and grinding some of the people in the club were doing for fear of having a massive hernia, but I got involved. I also spent a lot of the time searching for members of our party who just didn’t want to stay in the club, and picking my mates up off the dance floor, which quickly became a health and safety hazard…think skid pan covered in alcohol verses six-inch high heels.

I didn’t get in until around 4.30am after standing in the roughest taxi queues in the world in Chester. I know Chester. I’ve stood in some rough queues but this was dreadful, I find it hard to entertain extremely drunk people most of the time, but when it’s 4am and you’re stone cold sober and your bones hurt you’re so tired…let’s just say I was a little irritable, and that there was no better feeling than kicking off my high-heels and crawling into my trusty bed – that was until my feet cramped up into claws!!

The morning after the night before - urgh

The morning after the night before – urgh

I had a heck of a good time, and it was amazing to spend time with one of my bestest mates in the whole world, who has helped me through so much with this god awful illness over the years…but I am paying for it. Two days after the night out my stomach still feels like its been butted by a bull, which might have something to do with the dancing, but I think is mostly from the effort of picking people up off the floor. Winnie is in overdrive, and because I’ve only got small bags she keeps catching me by surprise and very sneakily destroying any underwear, bedding, flooring that might be near her when she decided to have a minor explosion. I don’t know why it’s happening, but she is really not very happy at all, and in turn it is making my skin and me fairly unhappy.

So I have no energy, an overproductive ostomy, and feet like claws. But was it worth it? Hell YEH!!!

Advertisements

Here’s Winnie – meet my temperamental stoma


Yesterday me and Winnie celebrated our 10-week anniversary. But, because all I remember about the day the surgeons ripped my once flat stoma open and tore my poor and battle worn colon out, is being dopey and drugged up and feeling the sort of pain and soreness that you would expect a person to feel when a major organ has been ripped out of their body, I tend to think of the day after the op as the first real day me and Winnie spent together.

So true!!!

So true!!!

A lot has happened since I woke up groggy from the massive dose of anesthetic and realised that my worst fear had finally come true – my once flat stomach had been torn apart and a giant pink stoma was now erupting from the surface. Me and Winnie have been on a lot of adventures together, faced horrible challenges, snuggled up in sweat pants with hot coco when we’ve not been feeling well, and have had some God awful ‘I hate you so much’ fallings out.

I’ve struggled to accept her need to constantly make embarrassing farmyard noises in totally inappropriate situations, while she has put up with my inability to stay away from foods that make her sick (I promise you not matter how much you hate it, I will always eat loads of spinach, even though you spit it out whole). I’ve put up with her non-stop attention seeking and ability to fill-up faster than the speed of life, while she has struggled to keep up with my stubbornness and inability to put my feet up and just rest.

We go together like Brie and Bacon

We go together like Brie and Bacon

We have had our highs and lows. Ok, more lows than highs at the moment, but just like any long-lasting relationship at first you have to learn to put up with each other. After living for 25-years with my colon, I now have had to get used to life without one of my major organs and accept Winnie as an alternative to using my arse to go to the loo 🙂 it has been a major learning curve, but one I have got used to and accepted a lot quicker than I ever thought I would.

Now that 10 weeks have passed I thought it was about time that I showed you Winnie. I mean I’ve been telling you all about her, praising her and bitching about her for the past two months, and I, very rudely, have never introduced you to her. Now to everyone who said they wouldn’t read my blog if there was anything gross in it, I apologise, but even though she sometimes (well a lot of the time) does gross things, Winnie is NOT gross…she is totally natural, and I would still be seriously ill without her. So here she is. My surgeon and stoma nurse say she is perfectly formed, and she is 🙂 n.t I’m sorry about all the scars and how yucky they look, but if I wait for them to heal without showing you Winnie we could be waiting for years!

So here you can see Winne, Oscar (who is poking out of my stomach and causing me all sorts of problems at the moment) is the one who looks a little like a second belly button or  thumb print, and Felicity the fistula. You can also see my very itchy scar from the operation, surrounding my almost non-existent belly button, which has been swamped by the itchy rashes caused by plasters, adhesives and dressings. I thought I would always hate this scar, and at the moment I do, but I know that I will grow to accept it in the end – well hopefully.

Winnie the very temperamental stoma, released for good behaviour for a minute or two

Winnie the very temperamental stoma, released for good behaviour for a minute or two

Winnie is pink, problematic, has a split personality disorder, and is 25mm big (which is a hell of a lot smaller than she was when she first came into this world). We have days where we hate each other, but you know what she has saved my life, and she is a small price to pay for a life without the crippling pain of Crohn’s Disease.

I didn’t show you Winnie before because I was scared to. It sounds silly now but I have been dreading this post, and even though I wouldn’t want to admit it I was putting it off. But now I have show you her I can’t understand why I was making such a big ho ha about it. So, say hi to Winnie world!

As you all know, before I was forced to have my emergency ileostomy op I was scared, well shitless, about the idea of having anyone go near me with a sharp knife to slit open my poor skin – I won’t go into how terrified I was about the idea of having a stoma, or we could be here all night! I guess I never thought I would be sat here showing the whole world a picture of her, I didn’t think I would even be able to look at her. 

And here she is looking very sore from the hot weather :( I'm sorry Winnie - not her best look

And here she is looking very sore from the hot weather 😦 I’m sorry Winnie – not her best look

Despite the fact I had narrowly avoided having the surgery many times before, in the days before my operation 10-weeks-ago I may have accepted the idea of having an ileostomy bag but, I have to admit, I was still bloody terrified about having a stoma. After drawing those little x-marks-the-spot marks on my then flat and untouched stomach, and chatting to me about sizes of bags, accessories and all the other fun things that as a fashion mad lady I would usually love to hear and chat about (not in this situation tho), my lovely stoma nurse Maria gave me a pre-ostomy reading and prep pack.

This was just two days before the surgery, so there was no backing out. The slot was booked, the surgeons prepped, and my bowel was rapidly disintigrating…so, really there was no backing out of it. So I opened the pre-op pack and started devouring the literature in an attempt to get myself ready for my new arrival. All the shiny coated booklets where filled with images of happy smily people drinking coffee and taking bike rides in the sun and they were eating all the time! I mean, what’s with all the eating? Nearly every page was filled with images of either shiny-grey-haired pensioners laughing over orange juice and croissants, or smiling families tucking into picnics on sunny lawns…all the booklets seemed to be telling me is YOU CAN EAT ANYTHING WITH AN ILEOSTOMY!! And that really wasn’t the reassuring message I needed….it all seemed really over-glossy and fake, I needed something real, a picture of someone who was just, well like me.

My stomach the night before my operation - wish i had never taken this it makes me feel sad to look at

My stomach the night before my operation – wish i had never taken this it makes me feel sad to look at

What I needed was maybe an extract from someone’s blog, the real truth about how someone my age would feel after such a major operation, you know WHARTS AND ALL! I think if I could have read something honest, someone who said they had also felt really frightened, and that it hadn’t been all plain sailing with their ostomy but that it had been worth it in the end, that would have been a great help… so if you’re reading this and you’re from one of the pharmaceutical companies please, please, please think about putting in some honest stories from young people, instead of just filling those brochures with fake, plastered on smiles which wouldn’t look out-of-place in a pension or life insurance commercial.

Me with all my gadgets - my utility belt :)

Me with all my gadgets – my utility belt 🙂

Anyway, anyway, anyway, inside this pack there was a fake stoma and a bag, so that you could basically give-it-a-go, sort of try it on before you buy kind of thing. It wasn’t an enjoyable experience but I attached the fake squigy foam stoma to my marker x, filled up the bag with water from the communal tap on the ward, and attached it to my stomach. Then, according to the booklet, I was meant to walk around with the bag attached to me for a couple of hours to get used to the feeling of wearing it all the time, but it was just too heavy and uncomfortable, and the first time I emptied it, it made me feel so emotional that I started to cry as the water gushed from my stomach. So I took it off…I just didn’t want to have to deal with it until after the operation, when I guess I wouldn’t have a choice.

Cutting all my new manuka honey bags :) thanks Charter :)

Cutting all my new manuka honey bags 🙂 thanks Charter 🙂

What was worse than that was I had realised that I didn’t think I would be able to deal with touching and changing my stoma myself. I was really worried that I wouldn’t be capable of it, that for the rest of my life a nurse or a friend would have to deal with her. This was because when I was reading the literature I couldn’t look at the picture of the stoma…to me it looked pink, gross and slimy. A bit like a willy or worm sticking grossly out of someone’s stomach..and this one was a perfectly formed, no stitches, no poop, no blood stoma, so how was I going to be able to deal with mine post surgery? I did, but that is a different story, for now I want to tell you that I put my hand over that horrible picture and wouldn’t look at it even when my nurses tried to get me to.

I even took a picture (see above) of my stomach the night before the operation. I guess it was a souvenir picture so that I could always remember what my stomach looked like before the scars and the stoma. You know, something to show the grandkids and all that. I wish I had never taken it, and have deleted it off my phone, as I was spending too much time looking at it and feeling sad.

But now, as I show you this picture I know that I am 100% fine about having a stoma. I feel fine about the idea of having Winnie for the rest of my life. I mean, if that means a life without the crippling pain of Crohns, the constant toilet visits and the inability to follow my dreams, or even nip to the shops for fear of having an accident, having a little pink lump on my stomach that occasionally farts in public is a small price to pay.

There’s no shame in talking POOP, mooning nurses & yucky antibiotics


http://youtu.be/meTZDQ0qEjc

So I’m back on the dreaded antibiotics again! I always dread going to the doctors because no matter what the problem they always

Me & Winnie have a very bad day and night

seem to put me on antibiotics, in fact, I think they have put me on so many of them over the years that they may as well be giving me a little tablet with nothing in it for all the curing qualities it is having on my body….which, I am now sure, is totally immune to them.

Antibiotics never seem to do anything apart from mess up my meal times, as, if you follow the instructions correctly, which I always try to do, you have to take them one hour before eating or two hours after eating totally destroying all the advice my dietician gave me to help me gain weight and to give my poor beaten body nutrients and the energy to fight my evil Crohns/Colitis, who keeps coming back with bigger and better weapons every day!

I dread going on them and, probably like a lot of stubborn IBD and chronically ill patients, when I get an infection or complication that I know will require being put on those dreaded blue capsules I try to put up with it for a few days – (#ahem) Weeks – until it goes gooey and pussy and starts looking like a scene from Alien, then, and only then, do I face my fate and head to the doctor’s surgery with my tail firmly tucked between my legs begging for tablets or a miracle cure.

ARGH the big blue puke pills

ARGH the big blue puke pills

You see all the antibiotics do, and it doesn’t seem to matter what type they give me, is make me really horrendously nauseous. Honestly, it doesn’t matter if they’re for flu, a skin infection, eczema, conjunctivitis, or all of the above at once, they trump the thing they are meant to be curing by making me sick to the stomach the moment I pop the first luminous coloured coated capsule into my trembling mouth (almost went Mills and Boon then guys with the imagery #lol). But the cruelest thing about antibiotics is not the unfading nausea, but the fact that they don’t make you actually throw-up – here we go, I hear you all sigh, we knew she was Bulimic… But let me try to put it to you this way. Think of anytime that you have been horrendously hung-over and your stomach is tossing and flipping like a dingy lost in a massive storm at sea (think green and sick bags) you always reach that point where you think ‘I just need to be sick, I will feel better once I’m sick‘ – and sometimes you can’t…so it just sits on your stomach like a rock for the rest of the day, meaning you can’t eat or sleep or even smell food….THAT’S WHAT IT’S LIKE FOR ME ON ANTIBIOTICS!! I hope you understand what I mean now.

So today I dragged myself to the doctors to get my dressing changed on my ileostomy scar, which despite it being eight weeks and

Me & Archie too weak to get out of bed

two days since the dreaded op is still leaking and oozing horrible puss – basically it is just been stubborn and refusing to heal the right way. Let’s put it this way, my skin is trying to be radical, waving a placard and screaming I will heal, but not the way YOU THE MAN want me to!!! Instead I will heal from the outside and then spit through causing as much pain and taking as long as possible just to annoy you 🙂 I can almost hear it chuckling insanely as it rashes over and over granulates (oh get me – a medical term).

But despite my concern that the scar has gone all red, gooey and pussy, from the weird heat we are having in England at the moment (we are never satisfied with our weather are we?) and is now covered in red and brown eczema that is soooooo itchy it is a physical and mental effort not to scratch the dressings – I sometimes place my handbag close by just so it will rub against it and give it a cheeky scratch every so often as I walk to the coffee shop (I know that’s soooo naughty of me, and it won’t heal, but it just feels so damn good!) – the nurse said it seemed fine and put some iodine on it to stop any potential mastermind evil infection sneaking its way into my body and causing havoc.

HMMM bad spelling at Docs - should I be worried about other skills?

HMMM bad spelling at Docs – should I be worried about other skills?

Anyway, anyway, anyway my biggest concern and what led to me thrusting my bare naked bum in the poor bewildered nurse’s face, was a very sore lump on my butt that has developed over the past few days making it painful for me to sit on the loo or basically sit down anywhere at all. Before you all laugh, I don’t have piles – I have to add piles are no laughing matter, they are very painful and, yes (#snigger), I have had them many times before. As I told this poor woman about this lump, which has left me perching on the end of seats and tentatively sitting down, hovering above couches and benches like you do when you’re preparing for your bare flesh to hit boiling bath water (ouch!!), I could see her face gradually changing from the kind reassuring smile when she was changing my dressing to a stretched evil grimace. I swear I could honestly see her thinking ‘Oh no not another pimply bum I’m going to have to stick my finger in…Yuck!’ (obviously she didn’t say that, but, quite frankly, she didn’t have to).

So here’s the image. Me lying in the nurse’s chair with my girly knickers (with pretty stars on) pulled down around my knees and bum pointed unceremoniously in the air, with this poor middle-aged woman prodding my bum and me pointing into my bottom saying ‘I can feel it there, what is it?‘ – I have to explain here that because of Winnie and Oscar I can’t see the area down there…I mean it is hard enough to look at your underneath in the mirror anyway (which guys will know if you are checking yourself, which you should be) without two bags swinging in the way all the time (yes I know that sounds rude!) – and her going mmm ahhh in a ‘I don’t know what it is’ kind of way.

On the nurse’s table moments before sticking my butt in the air

This was one of those moments, which like on a night out when you suddenly realise you might have pulled, that you wish you had nicer underwear on…but never mind, that was the least of my worries as a second later the nurse started squeezing at the lump inside my bum cheeks so hard that I start squealing in pain – yes squealing like a little piggy. She squeezed and she squeezed saying ‘Are you ok? Can you feel that? Does that Hurt’ – I squealed something like ‘yes it hurts, I’m ok don’t worry’, but in my head I was shouting OF COURSE IT BLOODY HURTS YOU ARE SQUEEZING MY BUM OFF!!! Eventually, after what seemed like a year and some puss coming out of the lump later, she declared it was a small cyst, caused by the plastic enema I have been shoving up my bottom to calm down the remaining part of my colon and that I would need antibiotics.

Which is what leads me to gulping down this horrid blue sugar-coated tablet knowing, beyond any doubt, that I will wake up tomorrow as sick as a dog with a massive warty cyst on my bottom bright red and shining like a beacon on a rocky bay. ( I know what an anti-climax to a very long rambling story!)

Anyway the other night when I couldn’t sleep I vblogged another Ostomy Hour – I hope you LOVE IT and will tell all your friends about it 🙂 PLEASE, PRETTY PLEASE WITH MARSHMALLOWS ON TOP. It’s about the online IBD community and the amazing support just everyday people are giving others by sharing their stories on the interweb.

Since I have had my ostomy I have found so many brave Crohns and IBD sufferers who are selflessly putting themselves out there, basically having the balls to tell every little thing about their life in order to help others (in my vblog above I talk about when I did a tell-all article in the Evening Chronicle and the crazily large pic of me they used on the front grimacing like a maniac). They post every little hicup, embarrassing moment and gory detail about their symptoms, the illness and the way they cope living while being constantly attacked by IBD…it is just so refreshing to hear people being so blatently honest and revealing the unglossed ‘real’ version of how IBD sufferers cope every day – stripped bare with no regard to what people might think of them or what impact telling their stories might have on their own reputations or their careers.

So, thank you to all those brave IBD and Ostomy bloggers and tweeters….from my very heart you are amazing (I am not talking about me here before you think HOW BIG HEADED). Please carry on sharing your story so that we can rid the world of the shameful stigma attached to IBD.

If you want to read my story from the Evening Chronicle go to:

http://www.chroniclelive.co.uk/news/health/secret-shame-crohns-disease-nearly-1417593      

or click on the image below:

EEEK every Geordie recognised me :)

EEEK every Geordie recognised me 🙂