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.

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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

Being a pushy patient – why you shouldn’t always just nod along


In the nurse's room being treated after kicking-off

In the nurse’s room being treated after kicking-off

For almost 13 years I have prided myself on being a ‘perfect patient’. I have allowed doctors to stick tubes in unthinkable places, endured painful procedures, taken toxic drugs, and had so many abdominal x-rays that have no doubt done irreparable damage to my ovaries. At times I have allowed myself to be submitted to totally unnecessary painful procedures, under the misguided pretence that having a canister of gas shot up my backside would help control my condition – in reality i’m almost 100% sure this was just so some curious trainee could have a poke around in the dark depths of my colon.

I always thought that by being an easy patient, by being obedient, by smiling and going along with whatever treatment or course of action they suggest, by making their lives easier in any way at all, I would get the best treatment. I thought that by taking their word as law they would treat me favourably. I always thought by being the quiet one on the ward, who waited patiently for her pain killers and didn’t complain even when she was being starved to death by the incompetence of hospital staff (or other horrifying things) that I would get treated favourably as they would want to come to see the quiet and polite young lady patiently waiting in her tidy bed, while all the other patients screamed, kicked-off and threw things around the ward.

But it is horrifying to admit that the exact opposite is true. It has taken some very rude wake-up calls, some terrifying moments and some horrifying scenes of neglect to make me realise that being an angel means nothing to hospital staff and medical professionals. A hospital, especially a ward, is like a zoo. The patients are like caged animals fighting to get back out into the wild. Forget about survival of the fittest, more like survival of the most tenacious, rude and obnoxious. If you want something done, changed, or even want to get out to the real world in one piece you have to become a pushy patient; questioning everything; chasing up every result; and playing as many mind games on the staff as humanly possible (like a child playing their parents against each other). You have to forget being a quiet little mouse, work on your roar and step in with the big boys – start thinking like a lion, or better still a cunning fox.

The sad truth is (this might not be in every case) the more awkward you are, the ruder, the more difficult, the more you turn into the patient from hell, the better treatment you get, and the smaller the chance of you being left to lie in your own faeces for days on end, until a member of your family kicks off on your behalf. And that’s only when you’re on the ward. As an outpatient getting anyone to take you seriously or managing to get the correct treatment means – I have learnt the lesson the hard way – that you should never just let your GI have the final say without questioning things, or demanding a second opinion. It’s more difficult with your GI, surgeon or doctor, as if you kick off all the time they simply won’t put up with it, you have to get them to want to answer your calls and put you to the front of the queue, but I have started to find that simply rolling over and taking their word as GOD you will not gain their respect, and quiet frankly I’m done with massaging people’s egos…this is my health, my life, not a boardroom. 

Even monks have to go to hospital it seems

Even monks have to go to hospital it seems

Up until my most recent hospital stay I’d been the ‘golden’ patient, helping old people to the toilet, getting nurses for people in pain, pressing the call button when the lady next to me sounded like she was having another heart attack. I guess I always wanted to make the nurses’ lives easier. I was horrified by how understaffed they were and realised how little time they had to deal with little things when there were extremely poorly people to tend to…I guess that was always ok until I was the incredibly poorly person, and I was still ignored and treated by the other patients as a member of staff.

Recently I have begun to question everything absolutely everyone involved in my medical care does. I guess after 13 years of managing my own illness I have had enough of being the ‘perfect patient’ when the people who I rely on to keep me alive are not treating me with the respect I believe I have earned. When they simply refuse to listen to me. For years I have agreed to everything, which I find odd as in my job as a journalist I never let anything go without asking 100 questions…but when it comes to my health I have always just agreed, even if deep down I have known that it is quite simply not the right thing to do (the exception here is surgery, it remains the only time I have downright refused to have something done).

Ok, I’ve not turned into a raging bitch, or a hospital diva, but recently my patience has run out and I think my medical team has noticed. My GP surgery, who have really

Odd looking test results which I demanded to have explained to me

Odd looking test results which I demanded to have explained to me

shown their true colours since my operation (they are so incompetent it is unreal), only started to treat me with a ouce of respect last week, finally taking my red raw wound seriously after months of giving me the wrong dressings, ignoring my symptoms and refusing to give me appointments, choosing instead to diagnose me over the phone…and what did it take to get them to sit up and listen you ask…me getting so frustrated at the latest act of incompetency that I boiled over with fury and kicked off in the almost-empty waiting area. The result? I got the royal treatment, with the head nurse seeing me immediately and treating my wound there and then. And, due to that it is starting to get better…so I might have felt bad for getting peeved with the clueless receptionist, but I can now sleep a little better without being in constant agony.

At last week’s appointment with my GI specialist I was determined not to take no for an answer. Ok, so they didn’t help themselves by highlighting their incompetence when the receptionist produced two sheets of paper instead of my file, and then tried to convince me that those flimsy sheets made-up my entire file. No, my file is as thick as a thesaurus. When I asked my GI where it was she admitted it was lost, but not to worry my confidential information would be somewhere in the hospital and someone would find it eventually. WHAT!!! Obviously this was so ridiculous I had to laugh, but it was a wake-up call, one that said if you want to get things sorted and get these people to listen to you your going to have to start taking matters into your own hands. I did! I questioned everything, I pushed for drugs, I said that feeling mediocre was not what I had signed up for and that I deserved to feel better, and guess what, almost 40 minutes after my name was called I emerged with a procedure booked, an appointment for the gynecologist and joint specialist (have been trying to get referred for 7 plus years) and some new medication to calm down my remaining colon.

Is this the perfect patient? If so, why do they wake us all the time?

Is this the perfect patient? If so, why do they wake us all the time?

Ok, not everything is fixed, but it is a step in the right direction, and I have learnt a valuable lesson that if I want something doing properly I can’t just hope it will happen I have to be willing to step up and fight for it. The years of waiting patiently are over I’m fed up of being fobbed off, I’m ready to get in the ring and really get stuck in and battle for my fight to a pain free life.

Coping with a NG tube – guest blog as me & Winnie get 10,000 views


I can’t believe it but after just a few months me and Winnie have had 10,000 views on our blog.

I know this doesn’t mean that 10,000 separate people have read about my crazy mishaps and adventures with my temperamental ostomy, but I am honestly amazed that so many people have clicked on the different posts and read about my life.

When I first started this blog I didn’t think anyone would read it, apart from maybe my mum. I just wanted to help others who suffer from Crohn’s or Colitis (or any other kind of chronic condition) not to feel alone, and to show the world that having an ostomy bag is not disgusting, taboo, or something to be ashamed of, and that it most definitely isn’t the end of youth, fun and freedom – in fact after more than a decade of a life ruled by IBD having my operation has meant just the opposite.

Sharing these experiences with you guys has been eye-opening, fun and sometimes extremely emotional. At times sharing my story, pain and mishaps has been upsetting, but just the act of putting these feelings and problems out into the unknown for everyone to see has been sort of therapeutic. The responses I have got have been incredible. After years of being terrified about what the world would think of me if I had a stoma, me and Winnie have been welcomed with open arms into a community of brave, understanding and generous people, and thousands of strangers have accepted Winnie, despite all her poop, inappropriate farts and nuclear explosions.

I want to thank you all for sticking with me through all this craziness. Sometimes I’m incredibly bubbly and positive, other times these posts can portray the side to my life were the illness rules me and I just feel like a miserable wreck. I just wanted my experiences to help one person, and I thought if that happened the, at times, hellish journey I have been through would all be worth while. It’s safe to say I didn’t think anyone would read this, and I am blown away that so many of you have.

Anyway, now that I have got past this milestone I have decided to share someone else’s story on my blog.

I found Kate on twitter and was inspired by her positive attitude despite being relatively newly diagnosed with Crohn’s Disease, (and of course that she shares the same name as a certain princess) and at the time having to go through the trauma of wearing an NG tube. I guess I was inspired by how open she was being about the condition as I remember how I tried to hide mine out of embarrassment, so much so that I almost died from the shame. I’m lucky enough to say that, although I have had tubes shoved in places even aliens wouldn’t probe, I have never had an NG tube, (I avoided it by the skin of my teeth once!) and although I know I would put up with it I don’t think I would handle it anywhere near as classily as Kate. 

Hi, my name is Kate Middleton, I am 17-years-old from Liverpool. I was diagnosed with Crohn’s disease in November 2012.

Kate out and about with her NG tube

Kate out and about with her NG tube

I am going to tell you my top three tips for if you ever need for an NG (nasogastric tube).

  1.  Don’t hide away.

You are still you even with a tube in your nose. Live your life as if you never had it, you will start going mad looking at the same four walls otherwise

2. Ignore some people.

Most people will look then carry on with their own business but there are some people who will keep staring. Just let it go over your head and forget about them, they don’t know why you have it. Easier said than done I know.


3. Stock up!

Fill your house up with boiled sweets, ice lollies and fruit tea, this is more if you can’t eat while on NG feed but it just gives you a nice taste.

You can read more about Kate’s experiences with IBD at her blog: crohnsgirlblog.wordpress.com

 

(If you want to share you story, tips or any experiences please get in touch, it would be great if I could feature one guest blog a month to help spread awareness about how no two people are effected by IBD or cope with their stomas in the same way)

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.

Winnie can’t stand the heat, expanding rice & the horrors of clear bags


So today have decided not to bore you with the rambling writing and instead thought you could listen to me whitter on in my stunning Burnley accident!!! So enjoy 🙂 Oh, by the way I don’t script these things and that is why they are so random and honest!!!

you can see all my rambling videos including #ostomyhour at http://www.youtube.com/thestomabaglady

Me & Winnie talk to USA, spurt crap all over the place and rant about hospitals


Over the past few days I have been finding it really hard to stay awake. I honestly can’t seem to keep my eyes open for longer than around an hour at a time. While I am finding this frustrating, and, if I have to be totally honest, a little worrying (this was what was happening before I went into hospital for surgery), it has undoubtably led to some rather amusing situations which even I can’t help but laugh about.

Oooh pretty flowers

Oooh pretty flowers

I have fallen asleep in packed hospital/doctor’s waiting rooms; on toilet seats; while watching TV; in coffee shops; while on the phone; in cars and, most embarrassing of all, when people are talking to me! I have even fallen asleep mid-sentence and woken-up half-an-hour later thinking Where Was I?? – I know…you couldn’t make it up!

In fact on Wednesday I became so concerned about my unpredictable slumbers that I decided it was high time that I gave in and went to the doctors to find out what the hell was going on with my worn-out body. I mean, I am obviously either dehydrated or lacking in some sort of vitamin or mineral which helps make it possible for normal people to not fall asleep every 10 seconds…imagine a world like that, trains would crash, bank robbers would be found leaning against safes with dribble pouring down their faces and bags stuffed with cash having a little snooze, and the Prime Minister would be found sat at the desk in No 1o with his slippers on, cuddling a cute teddy bear called Maggie and snoring into a mountain of red boxes while chaos erupted on the streets below. I mean nothing would ever get done, would it?

Trying to watch the tennis but drifting off

Trying to watch the tennis but drifting off

While sitting in the waiting room, which was packed with screaming kids with snotty noses and old ladies with bad hips, I started to feel that awful tiredness coming over me like a wave. Feeling my eyes starting to drop, I pulled my Kindle out of my handbag and tried desperately to read this week’s book, fighting with every tiny ounce of energy in my tired body to focus my vision and stop the words blurring, bouncing and leaping across the screen. I must have read the same sentence twice before my head dropped and I fell fast asleep, probably snoring and making slight purring or snorting noises similar to those you would normally hear in a farmyard or coming from a pigsty, and undoubtably dribbling and pulling some sort of horrendously embarrassing face (hope those pics don’t turn up on the internet). I woke-up around 20 minutes later after, much to my surprise, a sheep (I don’t know why a sheep) in my dream started calling my name! Even though I was dreaming I knew that something wasn’t right about this as; a) this sheep didn’t have a starring role in the dream; b) sheep do not talk; c) my name sounded like it was being called from another world, it had an echoey shouting underwater quality to it, which just didn’t sound like it was coming from inside my pleasant slumber world. I woke up with a jerk, pulling my dribble stained hand away from my cheek, to find the not-so bad-looking doctor (it had to be him right #typical) leaning over me calling my name, with a strange expression on his face, which I could only interpret as somewhere between amusement and disgust!! I wouldn’t say I have never been so embarrassed, as that would be a lie – I have had tubes shoved where the sun doesn’t shine by doctors who resembled Brad Pitt ( not the ideal first impression for any girl to make) and been stopped in the street by crushes and butter wouldn’t melt almost Calvin Cline underwear models for directions or an annoyingly long conversation, knowing that any minute I’m going to have a poop related incident – but I have to say that I must have looked shocked and humiliated as I staggered towards his office, no doubt with my hair stuck to my face by drool and a tell-tale red hand-shaped-mark imprinted into the side of my face. THE SHAME!!!

According to Doc I wasn’t dehydrated as my tongue didn’t look dry (don’t ask how he

Ohhh another smelly pressie for Winnie

Ohhh another smelly pressie for Winnie

came to that conclusion), he didn’t think I was lacking in anything serious as I didn’t look ill and my blood pressure was ok (saying that it was its normal abnormally low self) and I had an average temperature. He put the whole thing down to exhaustion and my body trying to heal itself following the loss of my bowel…which, he at last enlightened me, had been all torn out apart from the tiny and problematic rectal stump. But just to be on the safe side, and because he is a rather thorough doctor, he had a feel of my poor tummy, and prodded at a protesting Winnie, who at that moment, in what I decided was an OY! HOW DARE YOU TOUCH ME!! protest, decided to gurgle and erupt some fresh, warm poop into her freshly changed bag, before letting out a series of hideously loud and obnoxious farts – thank God he hadn’t taken the bag off!!!

I then had to sit in an uncomfortable state of silence and intolerable embarrassment for the rest of the appointment while he rang the hospital to arrange a blood-test and tried to get hold of the IBD nurse to change my medication, so that poor Winnie would no longer have to spit out the giant horse-tablets whole every day.

All I can say is that I was relieved to get out of that tiny room…and, I am 100% sure he was glad to see the back of us both.

Up set and drenched in town meeting a friend

Up set and drenched in town meeting a friend after doctors humiliation

I have had to tell Winnie off multiple times this week. She has spent the whole week thoroughly disagreeing with everything I eat, drink and so much as look at or think about putting in my mouth. I’m honestly starting to think that she enjoys testing me, and is trying to see how far she can push me before I race to the hospital screaming TAKE HER BACK, I’VE CHANGED MY MIND, GIVE ME A DIFFERENT MODEL. And, before you say it, I know that having a stoma is not like owning a car, and that I can’t take her back and exchange her for a soft top if I don’t like her after 21 days, but did I have to get stuck with such a madam?? I’m honestly sure that most people don’t have this much trouble with their new friends 😦 but mine is a total character, she doesn’t seem to know if she is coming or going, happy or sad, fussy or not fussy, working or refusing to in protest for some totally unknown cause.

Take for example yesterday, which was Winnie’s annual changing day (she get’s changed

Winnie, Oscar and Felicity post nuclear explosion in bathroom

Winnie, Oscar and Felicity post nuclear explosion in bathroom

every other day, so she is always clean and fresh and looking her best). I was halfway through changing her, I had cleaned and dried around her bottom and had smothered her with special barrier protecting cream so she didn’t get red and sore from the adhesive Flange (horrid word YUCK), and had decided, just for a second, to take my attention off her and move onto cleaning my wound and washing out Oscar (my remaining colon poking through my stomach #nice!), when she decided to have a totally paddy to really p**s me off and get my attention. Without warning she started convulsing, her entire pink, plump body started moving in and out like it had a life of its own, and then suddenly she erupted everywhere, spurting fountains of fresh, smelly poop all down my leg and all over the bathroom floor. PANIC STATIONS. I grabbed layers of tissue, and, basically anything else I could find and desperately tried to plug the leak, but nothing wanted to stop her, she was on a roll and was determined to teach me a lesson for ignoring her!! It was total bedlam, and when it was over, and she allowed me the few seconds of ceasefire to clean her like a little baby and nestle her bag in her bag – well, I pretty much stuffed her in, in an attempt to teach her a lesson – I collapsed in a heap on the bathroom floor before finishing the job by putting on my dressings and having a much-needed wash and clean-up of the crime scene.

A slightly steady moment at the castle..felt like a princess

A slightly steady moment at the castle..felt like a princess

She also had a major paddy on our day out with the folks to Cholmondeley Castle on Thursday. The plan was to go out to the castle’s grounds for the day to look at the pretty flowers and enjoy a scrummy picnic on the manicured lawns. And that’s exactly what we did, but not without Winnie and my exhausted body trying to add some much UN-NEEDED drama to the occasion. We arrived at the castle after I had fallen asleep mid-sentence while talking to my Mum and Dad in the car…I think I had been telling them about a lovely offer I have had from an amazingly generous person to pay for one of my more expensive challenges, when, totally out of the blue I fell fast asleep half way through a sentence. It was something like “I just can’t believe he would do such a….zzzzz”!! My poor parents must have been totally bemused and confused as to whether to wake me up, let me sleep, or drive me straight to the A&E department and have me admitted for weird sleeping patterns and inability to stay away even when talking.

Anyway, anyway, anyway. We arrived at the castle – well they arrived and I sort of dozed

A very windy picnic with the Flints

A very windy picnic with the Flints

into the land of the living as we approached the massive estate – got out of the car and started to walk around the stunning gardens. As we got just about far enough away from the car, in the middle of exploring some gorgeous rose beds, with me trying to take professional style photos of various multi-coloured roses with my not so professional and rather knackered camera phone, I suddenly realised my legs didn’t want to behave themselves anymore. My poor legs appeared to have acquired a life of their own (Micheal Jackson stylie), and were suddenly refusing to take my body in; a) the right direction; b) anywhere that required them standing. They appeared to be buckling under the simple pressure and decided to trip me up and make me stumble all over the place, almost sending me tumbling into thorny rose bushes and making me look like an overgrown toddler trying to advance from crawling a week or so too soon. My poor reliable Dad seemed to spot my problem almost from the word go and hastily rescued me from landing facedown among the rose bushes, hooking his arm under mine and sticking by the side for the rest of the day, in an attempt to stop me costing millions of pounds of damage to Lord and Lady Cholmondeley’s extravagant flowerbeds. I will be eternally grateful.

Me and the pretty flowers

Me and the pretty flowers

If it wasn’t bad enough that I appeared to have lost control of my limbs and was walking around the grounds in a zombie style trance, barely managing to keep my heavy eyes open, Winnie decided that she had been ignored for long enough and decided to have an almighty paddy in the grounds public toilets. After years of suffering from Crohns I have a massive dislike for public toilets, but I am also always eternally grateful that they exist to help save me in my frequent moments of desperation. I hate how dirty and unkept they are, and that there is always the risk that you could be attacked by a random drunk/drug dealer hiding in one of the unlit cubicles, and that entering a cubicle is like playing chicken or guess who…you never know what will be behind the door or under the toilet lid SURPRISE!!! (yucky, ewh, I feel sick even thinking about the revolting things I have seen, why do women do that in toilets?) Anyway I ventured inside these outdoor toilets, which were not really that bad as far as public loos go..they had toilet roll which wasn’t strewn all over the place, and there was nothing nasty floating in the bowl (puke!!). I went to empty Winnie to find, horror of horrors, that the loo roll was in one of those health and safety round containers, and for the life of me I couldn’t find the end of it to pull down! So I stood there holding Winnie’s end with one hand and frantically searching for the end of the roll with the other..it was frustrating and by the time I had thankfully found it, I will leave it to your imagination, but it took a hell of a lot longer to clean her up than it would have done had that flaming protective cover not have been there!!!!

Yes, I know that wasn’t Winnie’s fault and it’s unfair to blame her, but for the rest of the

in the garden enjoying a few rare rays of sunshine yesterday before Murray mania

in the garden enjoying a few rare rays of sunshine yesterday before Murray mania

afternoon she threatened to kick-off whenever we ventured more than a metre away from the only loos in the hundreds of acres of grounds. She did it during the picnic, and I continued trying to eat my tea and grab bits of food and cutlery that kept being blown away in the wind, while feeling her swelling into a gas-filled balloon under my jacket. While we were looking at the weird and wonderful petting zoo animals, and even on the way back in the car where I thankfully fell asleep two seconds into the journey so didn’t notice her constant tantrums or the horrible bumpy Cheshire roads.

When I got home I raced straight to bed and slept for a lovely few hours 🙂 it was bliss, until Winnie woke me and insisted upon being changed again following her first slight leak, which was caused by the bag lifting up slightly in the heat I think. Which I handled much better and more calmly than I thought actually. I then had to dress her in the first bag I have ever cut for her, having run out of the ones the Stoma Nurse had cut…this was a nerve-wracking experience..lets just say I didn’t have much confidence in my own cutting abilities and accuracy and spent the entire sleepless night checking her for any sign of leakage or damage caused by her collar being just too tight.

Oh and before I forget, I spent the other evening, after lots of messing around not being able to find each other (first time I had used Skype) talking to a lovely lady across the pound about my life with Crohns for a book she is writing. It took forever and there were a few awkward moments, and hilarious moments where I think we just didn’t understand each other…she even called my accent lovely 🙂 HMMM!! Anyway when we eventually finished at midnight (there had been some confusion over time differences), I sat in bed unable to sleep worrying about exactly how much of my life I had spilled to her during the interview. And faced the horrible reality that this is how it must feel to be on the other side of the journalist’s notebook…a rather worrying feeling of hmm should I have said that. But, hey ho, if it helps others to come to terms with their disease I don’t care if they hear about my shameful poop accidents!

Moving on to my first BIG Bowl of cereal...before today eating out of tiny bowls for kids

Moving on to my first BIG Bowl of cereal…before today eating out of tiny bowls for kids

Anyway, that’s enough moaning and rambling for one day. I will be gutted when Wimbledon finishes this weekend, as despite the fact that I have been falling asleep at the worst possible moments (tie-breaks and match points) during Murray’s matches I have throughly enjoying screaming at the telly and watching my boyfriend transform into a madman, screaming and calling the poor tennis player all sorts of horrible unnamable things as he throws himself around the court in an attempt to make us all proud. He really can be a twat when we are watching sport (sorry babe), but it is funny to watch 🙂 I’m sure it’s just being passionate about the game, well that’s what he tells me.

So now I’m going to go back to writing my complaint to the hospital regarding my recent stay, where they tried to poison me by constantly trying to feed me lactose, cripple me with a badly placed epidural and basically left me wasting away, depressed, in pain and confused. As I don’t want to bore you so I have done a mind-numbing video about it which you can watch below.