Being on the other side of the hospital curtain – the worry of being a relative

I’m sorry I’ve not blogged for a few weeks.

For the past couple of weeks I’ve been seeing things from the other side, my sister has been quite ill. I won’t go into details as it is her business, and while I’m very honest and open about my own condition it wouldn’t be fair to talk about her.

All my life I’ve been the ill one, the one everyone worries about, is sent cards and flowers, the one taking phone calls in hospital beds – it has rarely been the other way around.

But in the last few weeks my sister (who often has coughs and colds but nothing drastic) has been really ill, so much so she needed to go into hospital and have an operation.

It frightened the shit out of me to be honest with you. (sorry for swearing)

It was weird hearing her drugged up on medication, talking to her knowing she was propped up on a hospital bed hooked up to machines, and going through the horrid nil-by-mouth all I want to do is sleep period.

I suddenly went from the one everyone worried about, waited to hear from, tried to entertain when bored, to the worrier and the one trying desperately hard to entertain even though I had no clue what to say.

And it turned out I was rubbish at it and felt totally helpless….I may as well have been on the other side of the world for all the good I did, thank god my parents were there.

Basically the tables turned and I got to experience what my sister has had to cope with during all my years of illness (and my mum and my dad, and my boyfriends over the years).

And I have to say it was a horrible eye opener.

When you are in hospital it is an awful experience: it doesn’t matter how good the care is, how kind and compassionate the nurses and doctors are, or how much people bring you to do, it’s bloody horrible and you’d rather be anywhere else.

I was always so envious of everyone else being able to work, leave, work, eat what they want, work, use real soap and be able to wash their hands with anti-bac and then leave the hospital ward to go home to  TV, a hot meal and their own bed. I guess I don’t really think I appreciated that when my folks left after visiting time they took the worrying with them and probably only got the same amount as sleep as I did through panicking about me all night.

While you’re there you know your family are going sick with worry, are trying their best to help and are going through it with you – but I guess I didn’t appreciate just how stomach churning worrying it was until Hannah was admitted to hospital.

Even though I knew there was nothing at all I could do and that she was in the best place, in safe hands etc, I suddenly felt really far away, like I needed to be there, but I couldn’t be.

Luckily my sister is home now, which couldn’t make me more happy. Having been in her shoes  I know how nice it is to get back to your own bed, food and teddy bears!

Her being ill has made me realise a few things, one is that I need to be less selfish.

When I first rang my mum when my sister told me she was in hospital she told me I needed to take care of myself as I couldn’t be ill to.

She’s right I need to start taking care of myself not just for me, but for my family, my boyfriend, my career and my life.

How I am affects everyone around me, but it takes its toll mostly on my family. I don’t want the first thing that pops into their head when they get a couple of calls off me to be ‘is she in hospital, is she ill’ – I want it to be what amazing news has she got, has she won and award, is she engaged?

 

I want my family to be able to rely on me not worry about me. So for everyone’s sake its time to start sorting myself out….I am well now so I shouldn’t still be thought of as the sick one and I don’t want to be thought of that for the rest of my life.

If my sister or my mum, or my dad get sick I want them to be able to rely on me, not worry that I’m too busy or fragile to deal with it. It’s time for me to start getting my priorities, which is my family in order, which means seeing them more often, staying in touch and appreciating them more.

I don’t know how this blog ended up being all about me (which I guess proves my point down to a tee) – so I’m going to shut up.

 

 

Trying to find the right fit – getting clothes to look right with an ostomy and IBD – part 1

After a few nightmarish days of running around the Trafford Centre in search of a pencil skirt which fits a thin person with an ostomy bag and finding absolutely zilch, which lead to a full-scale breakdown, tears and wailing of ‘I’m disgusting, just look at me’, I thought I would do a series of blogs on trying to find clothes that fit and make you feel a million dollars when you have IBD and/or an ostomy bag. Let’s hope it helps to stop you spiralling into a shopping induced whirlpool of self-pity.

So here we go, over the next three days I am going to blog about my fashion dilemmas, what not to wear when your bag is on overdrive, and how to make yourself feel instantly happier, braver and more confident even when you’re about to disappear into a world of pain and misery…oh, and the biggest tip of all – avoiding white pants.

Over the years I have really struggled to find clothes that fit and look right. Years of

Work – some outfits have lasted the op – this is one

weight fluctuation due to Crohn’s/Colitis flare-ups and lengthy periods of hospitalisation have caused chaos in the wardrobe department, meaning I seemed to have developed two wardrobes: one for when I’m sick and the other for when I’m well – I’m sure you know which one I wear most often.

My wardrobe is divided. One side appears to be clothes that when I’m ill I wouldn’t be seen dead in for fear of either looking like a vampirish skeleton or, on the exact opposite side of the scale, looking like a beached whale. I have loose fitting clothes for the days I look like a snake that’s swallowed a hippo – you know skinny but with a bloated belly the size of a small planet – and I have hundreds of too big jumpers which can be layered up to give the pretence that I’ve not lost that disastrous amount of weight again – a trick I picked up years ago in an attempt to stop my spiralling illness upsetting my friends and relatives. I’m 99% sure this doesn’t work anymore, but I have to admit that I find comfort in wearing clothes which bulk me out when I’m looking painfully thin – oh, and it does help to keep me warm.

As a self-conscious woman suffering from IBD wrecks total havoc on my daily getting ready ritual. Even something as simple as getting dressed for work can result in a room strewn with clothes and a total meltdown. Some days even silk hurts my swollen belly. Kicker lines dig painfully into my hips, bra clasps rub sores into my bony spine, and dresses pull uncomfortably as my stomach spasms underneath the material. I’ve had days where nothing fits right, where everything causes discomfort, or in some weird magic trick the clothes that fitted perfectly just days before are transformed into giant’s clothes. Some days my room ends up looking like a Very catalogue has exploded all over it, with clothes strewn everywhere. On days like that I’ve considered going to work in my PJs, or even naked – I’m sure that would raise a few eyebrows in court.

Summer dress – teamed with tights = winter winner

In previous posts I’ve talked about how I expected to feel unattractive following my surgery; how I expected to not want to wear anything but trackies for the rest of my life. When I first took off my baggy joggers and pjs after months of recovery I vowed never to go back to them again. Ok, so I haven’t stuck to that. As I write this I have to admit I’m wearing my team GB joggers teamed with a far too big jumper. Yes, I look dreadful. Yes, i wouldn’t go out like this (well I would just to get some sweets or a snack) but I’m comfortable and that’s what joggers are made for, pigging out days and poorly days. I don’t feel guilty about wearing them occasionally but since my surgery I have realised the value of dressing to make yourself feel good, look good and to increase confidence. I’ve realised that when I’m wearing my trackies I don’t feel womanly or attractive, that even when I’m feeling ill, bloated or tired, putting on a nice dress, doing my makeup and hair and pulling on a pair of heels instantly makes me feel better, even if inside I’m crying.

Post surgery has presented me with a whole new world of problems in the fashion department. The best thing I ever did was to bite the bullet and through out all my ‘I will never wear you again’ outfits which would have been a daily reminder in my wardrobe of the figure I once had prior to the arrival of Winnie (the stoma) and my un-scarred stomach. I thought that I would miss those clothes; the figure hugging body con dresses I used to dance the night away in, the bikinis and extremely uncomfortable jeans – I don’t miss them one bit.

At first I stubbornly tried to dress the same way I used to. It worked for a while as I’d lost so much weight the added width of my ostomy bag on my waist line didn’t make a dint on my waistband, but once my muscles and weight started to return I learnt the hard way that the well-worn skinny jeans were no longer an option now that I had my new best friend. Those were my favourite jeans. They were cheap but comfortable and fitted me like a glove, so I carried on stubbornly wearing them, despite the fact they were crushing Winnie to death. I finally threw them away after a few very unfortunate incidents on long car journeys, where, the lesson was learned that a tight waist band resting on an overactive ostomy = explosion. Those jeans were not made for sitting down.

More tomorrow…in the meantime if you have any fashion tips please get in touch and share them….you could help someone (me included) feel more confident.

 

Just how well am I allowed to expect to be? Never 100% it seems – it’s time to say ostomy or not I need help

I’ve just about had enough, life just isn’t what it was straight after my operation. Over the past week I’ve just simply not felt like talking about anything fun, happy or colourful. I’ve continued to put on a brave face and smile, but the truth is I don’t really feel like smiling. It could be because of the cold dark nights, it could be going into work while its still dark and arriving home in the depths of blackness, living like a vampire and never seeing the sun, it could be a whole number of things – but it isn’t I’ve just had enough of getting the rough end of the deal.

This week and last I haven’t been feeling happy with the straw I’ve drawn. After 13 years I’ve served my sentence and now I’ve had enough. I’m not happy with my health since my operation. It’s not the miracle cure for my Crohn’s/Colitis that I’d hoped, it was for a few months like living a brand new life, but now it’s not.

Ok, so maybe this has something to do with spending the last week in the most unbearable pain since my operation after developing a very freakishly large abscess in a very unfortunate place (I don’t think I need to elaborate). After the amazing weekend in Newcastle falling back in love with swimming all over again and feeling back to my old self – less the agonising pain – I suddenly (in the space of hours) developed this lump, which grotesquely gained a life of its own and grew and grew to the size of a golf ball. The result was that come Monday night I was in unbearable pain…unable to walk, sit down or lie down without emitting a squeak like a dying mouse caught in a trap. And by Tuesday I struggled to sit at work perched on the end of my seat waiting for 3 o’clock for an emergency appointment with the IBD nurse who took one look at it and went “oh Rachel that’s painful to look at” declared it was probably only curable by operation before getting a doctor to poke at it till my eyes streamed and prescribed my with very powerful antibiotics (you know the type you are so forbidden to drink with they even write it on the outside of the package).

Anyway it drained bucket loads of bloody stuff and I spent three days in bed sleeping like there was no tomorrow. Oh and throwing up – great, thanks Crohns/Colitis.

At the follow-up appointment a doctor I’ve never met had another good poke – I wished at that point I’d had a bikini wax, strange what goes through your head at these moments – I often think of the oven being on, etc. Anyway she decided I’m officially ill. FINALLY. She also decided that I should have my operation as soon as possible to remove the rest of my bowel  something although I wouldn’t like to admit it almost reduced me to tears at the prospect of missing my Mirror placement, awards ceremony, Christmas parties and playing hopefully in snow – also the idea of being stuck at home for another four months just makes me want to die…haven’t I had enough for now?? Isn’t it time to live for a bit, to enjoy life?

But don’t I want to have it removed and be well, I mean truly well?

I never wanted this rubbish illness (I mean who does?) but since the operation it seems just mean that I’m still having many days where my life is ruled by bathrooms, blood, guts and pain. I keep hearing myself say to people “well i’m loads better than I was, I’ve never been more well in my life”, I keep hearing myself say to doctors, surgeons nurses  “I don’t want to complain I don’t feel great – but, I still feel loads better than I was”.

Why do I keep doing that? There’s really no wonder there doing nothing about my rapidly declining health when I keep saying I feel “loads better” but a little ill…I’m making it sound like I’ve got a common cold not an incurable illness. They’re probably thing that I put up with it before for a whole 13 years, so if I’m better than ever I can no doubt put up with a little NIGGLE for a little while longer – and no doubt I can if forced to – but how long is a little longer? A month? A year – A LIFETIME I’m guessing!

Anyway after 13 years of this hell and finally going under the knife why should I not expect to feel awesome, I mean like jumping out of an aeroplane awesome, running through a field wind in my hair awesome? I had a few blessed months of feeling weak but incredible, then I made a load of energetic plans but now I’m struggling to even imagine doing anything but the reading challenges.

I’m not happy with how my body is at the moment – there I said it (that wasn’t that hard). That’s the truth and it’s got nothing to do with my ostomy bag, in fact if it was just Winnie I would go running through the streets flashing her shouting SUPER WINNIE (no I wouldn’t for fear of all sorts of consequences, one of which would be a passing pigeon pecking at her) and showing her off as the most amazing piece of medical genius ever invented. No it’s all the other things that are currently going wrong:

A lovely day at the end of a very miserable week – I live for moments like this

1) my mucus fistula which seems to be getting bigger and even more like a second stoma every day. Honestly its a massive pain in the gut (metaphorically and literally). Felicity is both painful in her spur of the moment movements and dramatic. Basically like a messy child when my fistula erupts she never stays contained, she hardly ever aims into the bag, but more around it causing insane damage to my poor still not fully healed skin and creating a considerable and inconvenient mess.

It’s as if she knows that I don’t want her there. You see unlike Winnie I never wanted her, she was a horrible and unexpected consequence I never expected, like those bloody annoying people who unexpectedly turn up for tea when you don’t have enough food and never told you they had allergies and expect to be fed. My fistula basically came to the party without any beer and drank a whole crate.

2) the never-ending need to use the loo – I remember straight after my op when I went to the toilet for the first time I thought “what the hell my bowel isn’t connected to anything, how can I still do this?” – an excellent question I must say. Now it’s six months later and the urgency is still there and I still find myself having accidents and racing around to find the nearest M&S to use the loos – hmm not what I signed up for.

3) the unexpected abscess – urgh comes hand in hand with my illness it seems.

4) feeling depressed – comes hand in hand with my illness it seems.

5) my joints – the cold weather drawing in is playing havoc and some days holding a pen/ putting on my coat with my hands and shoulders seems a true challenge. Nothing seems to be getting rid of this agonising problem – and I don’t think anything will, but never mind it’s a small problem in a large goldfish at the moment.

I just want to be ok, is that too much to ask? it would seem with IBD it is, and I’m guess I’m used to that and I can put up with that. It’s moments like tonight when really looking forward to swimming and suddenly realising as I remove my tights that fistula has soaked me though with blood…God knows how long I was like that for too. So I had a break-down and got re-dressed and ran out. Bloody drama Queen!

A little moment of calm – no leak!!!

I had been feeling a little better too after a stunning Autumn walk in Lymm on Sunday with Andy, kicking the fallen leaves and dancing around in my new furry hat and running away from crazy muddy dogs determined to leave their print on my new cream coat. But that swimming moment has brought me crashing down into a world of negative feeling sorry for my self yet again.

I only wanted to feel like me again. Which, I’m sure once these antibiotics are gone and the docs have stopped shoving tubes up and down various places aliens would probe I will.

I just need some help getting back to that place….help!

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!

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.

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

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

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

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?

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.

Adventure holiday drama and a very unexpected birthday present

I’m back in one piece!! I know it’s a miracle but I have officially made it home from my

Caution squirrels me and Winnie are loose

girly adventure holiday without any injuries, scrapes or even bumps. Even Winnie, despite threatening to kick off constantly, was extremely well-behaved and didn’t even kick off when I managed to swallow a few pieces of sweetcorn by mistake while trying to fish them all out of a very ill-chosen salad.

Ok, so maybe that’s not true…let’s just say that’s what I would have liked to have written at the start of this blog. What I’m missing out is that me and my friends raced back from our trip to Centre Parcs after two rather frightening metal looking hoops burst through the opening of my fistula, causing me to suffer a major breakdown and sway in and out of consciousness as I tried determine what weird and wonderful surgical piece of equipment the surgeons had left in my body was trying to break its way out by bursting out of my skin.

ME in A&E unhappily waiting to find out what is sticking out of fistula

The trip – which had been filled with fun, laughter, adventure and gossip, and seen me sweating like a pig as I furiously pedaled up steep hills determined to get to the top despite my ostomy bag hitting my legs (my bike was a little too small) and shouting back at my mate who had given up and got off to walk “beaten by a post-op patient” (which I’ve just realised made me sound like I’d just had sex change surgery) – ended with me dressed in a rather trendy hospital gown, demanding IV paracetamol and shaking with fright and pain as I was systematically ignored by everyone in A&E despite the very real fear that whatever the ‘wires’ were could have perforated my remaining (and potentially healthy) bowel.

It actually took four hours for anyone to ask to look at my abdomen, and when they did they could see exactly what I had been trying to tell them for the past few hours (in between falling in and out of consciousness) – and they quickly admitted I did indeed have some sort of foreign object sticking out of my stomach. I felt like saying NEVER!!! In fact the nervous junior doctor who eventually plucked-up enough courage to ask me to lift up my gown (ohh la la) and take a look, struggled to see the metal glinting under my fistula bag, but when he did see it he seemed shocked, before admitting he “didn’t know what he was doing” (a worrying yet refreshingly honest attitude) and ambling off to get someone else who I trusted and recognised to have a good poke around.

So after four hours of stressing out, pain and worrying in A&E, the surgical nurse at last

EWH very red skin and you can just about see the loop at the bottom of the pic

took to my stomach with a pair of scissors and snipped away at the loops (which had got even bigger in the time I had been waiting). This was uncomfortable, but by no means painful, but I am ashamed to admit that I caused a bit of a fuss, firstly, rather childishly telling him NOT TO TOUCH ME, but then, after a reassuring explanation that he wasn’t about to pull meters of this stuff out of my body, I gave in , screwed up my eyes and let him get to work trimming my wires! It took him the whole of five seconds, and when they were taken out I took a look at what he had removed, and they were really long pieces of plastic – no wonder I had been in so much pain.

Anyway to get the record straight I had it explained to me that this was not a surgical error, I was not seeing bits of plastic the surgeons had absent-mindedly left in my body following the operation as they rushed to get to the pub on time. These were stitches which had been used to pin down my remaining colon (or rectal stump) which broke away months ago as my colon went crashing through my stomach wall (creating Oscar) and had been trying to work their way out of my body for God knows how long. The stitches were meant to dissolve naturally but, well, had been being stubborn and had decided not to! Instead, my body’s typically dramatic fashion, they decided to burst out of stomach, causing me to dissolve into a blithering wreck of panic as my mind tried to comprehend the possibility of further surgery.

Well it seems this is all fairly normal following a massive operation like this, but how was I to know that? No one had warned me this might happen. Just like no one warned me that my stitches might burst sending mucus gushing out of my stomach. No one warned me, so when I woke up that morning and spotted the very sturdy and alien loops protruding out of my fistula I thought something had gone massively wrong and that I was going to die! So it was panic stations all round….all I can say is it is a good job we were leaving Centre Parcs that day and this ridiculous complication didn’t cut our girly holiday short.

Just a shame it had to happen on one of my best friend’s birthdays.

Picture this…you’re having a lovely lie in on the morning of your birthday. So far you have had a fun but exhausting weekend, raft building, cycling and playing board games. And last night you spent playing shrades and opening presents from your friends in the chalet in the middle of the forest, before tumbling into bed in the early hours of the morning. Next thing you know a crazy-haired person dressed in a towel shakes you from your sleep, tears pouring down her face, saying “something’s wrong, something’s wrong”. Before proceeding to flash her boobs at you, while showing you a red raw surgery scar and a fistula, making you peer into the gooey mess to confirm there is indeed part of a builders work yard sticking out of her stomach, and that she isn’t going insane – NOT THE BEST BIRTHDAY PRESENT I’VE EVER GIVEN SOMEONE.

Hats off to my friend, she stayed incredibly calm. She even managed to calm me down

Measuring myself at Centre Parcs

enough to ring everyone that needed ringing (hospital, boyfriend, parents etc) and get the whole chalet packed up and ready to go. Before I told her I remember standing in the bathroom on the verge of a complete emotional breakdown trying to figure out what to do. I needed help, but who to ask. I didn’t want to wake her as it was her birthday, but the other person I thought of telling was all the way upstairs and I didn’t know her as well as I did my best friend. I honestly considered not saying anything, until I mistakenly knocked the wires as I pulled up the towel sending shooting pain through my abdomen and almost knocking myself to the ground as pain and nausea took over.

The journey home was a mishmash of memories, laughter and trying not to fall asleep. I was, and I think the people in the car were too, totally petrified that this could be something serious. I was honestly thanking my lucky stars that I had enjoyed myself, cycling, gossiping and even drinking a few glasses of wine, before I would be imprisoned back in the hospital. During the car journey back I had to stop myself from blubbering and shouting as the very real possibility that I would once again be back under the surgeon’s knife and confined to a hospital bed for another month or so flashed into my mind. I tried not to let it show (but I think it was totally obvious) that I was totally petrified.

Today I feel exhausted yet happy. Home from A&E and unpacked from my trip all I can think is how lucky I was to have someone so calm to help me in my moment of need. Just the day before one of our other friends had managed to miss a step in the apartment and sprain her ankle – this was after avoiding any injury whatsoever whilst swimming through a lake filled with waist-high weeds while trying to beat a family to build and race the best raft – and she, once again, was a picture of calm amongst chaos and confusion.

I just hope I didn’t ruin her birthday, but, I guess, it’s not one she’s ever likely to forget.

The girls raft building

The holiday itself was just what I needed. Ok, it was a bit of an emotional roller coaster for me, seeing me squealing with excitement as we got nearer the holiday resort in the car, then sobbing in the supermarket as the pain and fatigue from the car journey kicked-in, then excitedly racing around the forest on my bike before having a nervous break-down in the bathroom of a restaurant as my crab salad reappeared in the toilet bowl, appearing to multiply in the process. I’m not entirely sure why I felt so happy one minute and then so gutted and down-in-the-dumps the next. I think I found it hard to stand and watch while the others swam, went on water slides and raced around building rafts while I sat at the side holding keys and inhalers and proudly taking photos like a mum waiting for her kids at Alton Towers. I think it upset me that I couldn’t fully join in with the activities due to my never-ending open wound and fistula, which I was told by the surgeon that I mustn’t submerge in water. I think I was envious of the swimming costumes and bikinis and the never-ending bottom-less stomachs of my mates, who seemed to be able to eat and eat and eat, unlike myself who was sick the moment I ate more than two marshmallows after tea.

First day…drying feet after not going in the pool!!!

I’m painting a negative image of this aren’t I…I’m just trying to be honest. But these moments where fleeting compared to how happy I felt for the majority of the trip. I loved the feeling of total freedom as I free wheeled down steep hills ringing my bell to get pedestrians to move out-of-the-way, dressing in our onsies and playing board games into the early hours of the morning, and simply being around other people and having a truly amazing time while not feeling like ‘the ill person’ all the time.

I do think, however, that I need to go back to work pretty sharpish. At the moment all I have to talk about is me and Winnie… which I’m sure is fine for a little while, but no doubt it has to get boring pretty quickly.

Oh, and did I mention I wore a ONSIE in front of everyone!!! So that’s another challenge done and dusted!!! It was the comfiest thing ever, however a warning to everyone, DO NOT FALL ASLEEP IN ONE, you will boil to death!!!

In our onsies – challenge complete

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!!!

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 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 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

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

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 🙂

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 🙂

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.

Me & Winnie disagree with vino & bounce along close to Jessie J and our brave Dad…

So I’m exhausted today 😦 let’s just say that I had far too much fun this weekend, which if you have IBD

(which includes Crohns and Ulcerative Colitis) is a recipe for disaster. Even before I had Winnie attached to my poor tummy I always found that my crazy Crohns or Colitis liked to pop up at the most inconvenient of times. Let’s put it this way….I would be feeling just slightly like a normal human being for a few days and would have just tried to live a little, go out, let my (very short) hair down and act like a normal 20 something-year-old when BOOM my illness would rear its ugly head in a kind of Peek-a-Boo “Here’s Johnny” way.

So yesterday was Father’s Day and I wanted to do a short V Blog to tell you about how amazing my Dad, and my family are and how important they have been in my journey through this illness. I love you DAD!!

So this weekend my poor, and extremely understanding boyfriend (I suppose you could call him my “better” half) decided to host a BBQ at his stunning house in the Cheshire countryside. His house is what we in the Ghetto call “something else” or “Mega Dope” (I’m sooo down with the kids). It is far too big, with massive gardens, and when you stay over you wake up to the sounds of cows mooing and birdies singing….it is paradise just miles from the city 🙂 I love it there!!! But Friday was the first time I have stayed there since my operation, and as a lady I had to take just about everything but the kitchen sink with me so that I could survive just two days! Well it is hard looking this good all the time #bigheaded

Anyway, anyway, anyway. On Friday night I made us both a healthy tea of pasta and veggie sausages and goat’s cheese. Which was YUM! Then we watched The Following, which, if you haven’t seen it is AWESOME, but terrifying, and being a proper wuss I spent half the time hiding behind a cushion and smudging my freshly painted nails by gripping my boyfriend’s hands so tight.

THE DRESS – I would never have worn this b4 Winnie – she is so much more cool than me

Then on Saturday the real fun began. We woke up to typical British horror weather, as you always do in England when you have an event planned that requires spending any time outdoors! I got dressed up in festival style clothes (no rain was going to stop me and Winnie wearing our new extra colourful maxi dress) and made massive amounts of healthy pasta salad to counteract the enormous amount of fatty meat he had purchased for the grill. Then I basically let him get on with it!

Anyway the BBQ was going well, my boy was enjoying being the MAN of the house, you know being in charge of burning the meat 🙂 – me man, me fire, me meat, me burn – and I basically carried things backwards and forwards and played being the hostess. We had a bit of rain which came after most people had arrived and the skies finally opened after the CLOUD OF DOOM finally shed its load after threatening to do so all day. It meant that around 10 adults decided to cram themselves into a very small Wendy house – amazing to say the least 🙂

So, after not drinking for around three months, I shunned alcohol all day despite people asking me again, and again, if I wanted a drink. I was even fairly careful with the fizzy pop, being aware that one sip too much would mean a whole day of Winnie flying into a paddy and blowing up with hot air in a fit of rage. But in the evening I decided to have my first sip of wine, and, guess what, I DIDN’T LIKE IT!!! For the people reading this that know me (which is probably all of you out of kindness to me) you will know that I love a good glass of Sauvignon Blanc – or two, or three (obviously I’m not an alcoholic but I may have a bottle or litre or two hidden under the sink #joke). So me not liking any wine is, quite frankly, extremely weird. I must have managed to have a drink at around 10pm, and only had about a medium glass…..I was WASTED 😦 which I suppose is great if you want a really cheap night out, but I just wanted to chill out and now I felt like I was going to fall asleep dribbling in a heap on the floor!!!

That was all I had…well, ok, that’s a lie…I may of had one tinie little gin, which I regretted the moment I put it to my lips and decided i didn’t want it (it was the gin that done her in…how true, how true). So I set about tidying up while the others played Pictionary in the living room and headed to bed having eaten only around half a sausage and a handful of pasta twirls. Everyone else was pretty drunk – I mean when I woke up the next day the house had been drunk so dry even a cactus would have died after weeks in the desert – which made it even more infuriating that I woke up feeling like I had been hit by a bus and everyone else was fine. I mean how unfair #wtf!!!

The morning after – trying to finish this really dreadful book (comment comment comment)

I probably felt as bad as I did the time at University that the Cheerleaders (yes queue laughter, me, Rachel, who can’t sing or put one leg in front of the other was a cheerleader) and American Footballers all put money together for me to drink a dirty pint made up of around 20, or it could even have been 30 (yes I was that popular) shots of black sambuca. Think banging headache, red-eye, hair all over the place, stomach cramps, nausea and dry mouth – it must have been a real special moment to wakeup next to me that day – mmm sexy!!!

Also I suddenly remembered that I had to finish Stephen Fry’s autobiography by the end of the day or I would break the “Read a Book a Week” part of my 101 challenges and have to start all over again. Which, I must stress, was not going to happen. So, with a gang of bleary eyed and far too enthusiastic guys in the house, I attempted to race through the remaining 200 pages of the book, which by now had become boring and tedious like all self-imposed chores (like ironing and hovering) eventually do when you are forced to do them…..

OH I FORGOT THE MOST EMBARRASSING MOMENT OF THE WHOLE WEEKEND!!! During the BBQ I had to empty Winnie a few times, and to do this I have a special (well a clothes line) peg to well peg up my dress so that I don’t make any mess. So I had done that, and around 2 hours later I needed to empty her again (which is almost a record amount of time for Winnie). I think you may have guessed it…I got to the loo and couldn’t find the peg so decided to just hold my dress out of the way…that’s when I discovered I had been sat chatting to all mine, and my bf’s friends for the past two hours with a pink peg clipped to the side of my dress!!!! Humiliating!!!

£5 bag of sweets – and they didn’t help

Later in the day, after I went back to bed for a few hours to try to sleep it off, which, well you’ll see from the pictures,  didn’t work. Me, Andy and Winnie went to Chester – errrr – Rocks!!! (I say err cause there is not much that Rocks about it I’m afraid – it is more of a pop thing, which I can’t say I mind, being a little teenie bopper – this does NOT mean that I hit Teens over the head with a mallet – at heart I love pop music)…. We saw Charlie Brown (?), some girl off the X Factor called Amelia and Lawson (some boy band I said I had never heard of but secretly love them)!!! I bought a bag of sweets to try to thicken up Winnie’s output as she had massively disagreed with the sip of alcohol and was stropping around like a moody teenager filling up with hot air and yucky poop – and it was the most expensive medicine I ever had costing me £5 for a bag of sweets. THANKS CHESTER RACECOURSE FOR NOT LETTING US TAKE OUR OWN FOOD AND DRINK!!!! ARGH!!!

I’m going to let you all into a secret now – I LOVE Jessie J!!! I don ‘t know why so many people don’t, I mean when I said I wanted to see her to some of my mates they were like “oh no…why?”, but she is fantastic. I love that she is unique and she doesn’t take any shit…I mean she doesn’t care what people think at all, does she 🙂 I got all excited when she got on stage and I started dancing like a freak!!! I even saw some parents looking at me with horror and even (you’ll laugh at this) move their children slowly away from me thinking I was a drugged-up Nutter!!! I think the people with me, Andy included, were totally humilated….there was never a better time to think “move away…we’re not with her…we don’t even know her”!!

Jessie J – “Its ok not to be Ok” good for you!!

I mean she was incredible, and all round entertainer who even said some truly from the heart things to the teenagers in the audience that I thought were just inspirational. She said it was ok to be who you wanted to be and to not worry what people thought or what people wanted you to be – that it was ok, not to be ok, and to cry and to feel like crap and to want to not do things people want you to do. I guess that struck home with me and what I am going through at the moment….I know I come across as happy-go-lucky, but behind my smile I can be seriously messed-up at times, this illness can seriously mess you up – I mean it’s draining emotionally as well as physically – but without all this pain I would never have become the person I am today for better or for worse!! Sometimes with Crohns, with a Winnie, I think it has to be ok not to be ok….I think It’s ok for us to breakdown, to feel and look like shit, to just want to curl up in a ball and cry, to hurt, to feel pain – just as long as at the end of it you pull yourself together and realise I WILL BE OK!!! I will not let this illness, this stroppy Winnie and this crap get me down…I AM STRONG, I RULE THIS ILLNESS IT DOES NOT RULE ME…

So with all that gibber jabber going round in my head Jessie (that’s how close we are….perhaps I should call her J) started singing my favourite song Who You Are. And, I am not ashamed to say actual tears started pouring down my face as she sang “tears don’t mean you’re loosing, everybodys brusing, just be true to who you are”. I think I just couldn’t believe that after all the pain, blood, poop, near death, stress and well years of not being ok with this horrible thing, with this crappy crappy illness, I was stood in a field with amazing friends, and an amazing man, and listening to a live music concert of a mega superstar telling me that ‘it’s ok not to be ok”…..when Andy asked me why I was crying I said “I am just so happy”…and that guys is the truth!

We finally got home after almost getting crushed by heaving crowds trying to get out of the tiniest exit in the world…God knows why they didn’t open the gates. I eventually was allowed through the gates by saying I was being bashed to death in the crush and had had surgery…the security guard didn’t look like he was having any of it and I almost had to show him Winnie and Oscar, but believed me when he saw how bent double I was -PHEW!

Anyway, this has been really long….so enjoy watching a really silly video of me dancing to Lawson at Chester Racecourse….the shame!!! (I looked like a freak, back away from the crazy woman kids). I call it the IBD Freedom dance!!!