Friday, 19 December 2014

I think... I love you...

So what am I so afraid of?
I'm afraid that I'm not sure of,
The love there is no cure for...
Anyway, enough singing (you gotta admit though, it's a catchy tune).

3 little words that mean?... absolutely nothing.

That's the trouble with words isn't it? You can say anything at all but it doesn't make them true.

Love is what?
The most important thing in life? If you've got it, everything is going to be ok.
The thing that causes the most pain? When you lose it, it hurts like hell.

What does it even mean anyway? If you look at the endless images that come up in Google when you type love in the search bar then you're led to believe that

Seriously, who writes this drivel?

Anyone you begin to date takes over your mind like that. It's new. It's exciting. It's nice to dream and in the throes of passion and that initial excitement it is easy to be sucked in to thinking about your perfect ending and ideal.

Well pack your vagina back in your knickers and get your mojo out of the clouds!

If you dont care, you don't get hurt. Bitter but true.

The more people I meet the more relationship breakdowns I come across and this makes me sad. The words "I think" and "I love you" should never be uttered in the same sentence. If you only think then you're not sure and if it's love you're sure. No question.

I can't understand why people settle for something that isn't perfect. That doesn't fit their life and satisfy their needs emotionally, intellectually and physically.

If it ain't perfect it ain't worth it.

I have spent a fair amount of time believing that you can make yourself not care in a bid to protect yourself, but you can't.

You also can't pretend to settle because at some point you'll cross paths with the kind of person that you should be with whilst pretending that all is ok with someone and you'll realise that all is not well and end up feeling isolated and unhappy.

I wish I could help the people I care about realise what they're worth.

I say this whilst my relationship status lies somewhere between 'it's complicated' and 'just having some fun'. I tell myself that this is ok because I know that this is all there is here. I tell myself lies, because they're just words. I can say anything at all but it doesn't make it true.



Saturday, 22 November 2014

Interview with Thaila Skye about #GetYourBellyOut

As one of the founders of #GetYourBellyOut, what has been your involvement in the campaign? What sort of things do you do? 

It was the spamming of my belly pic that brought us all together initially.


Any important decisions are made as a team such as any new fundraising ideas, competitions, merchandise, announcements etc. 
We knew straight away that we would make a great team and have since developed our roles for more specific purposes depending on our strengths.
I work in online marketing, mainly social media, so I spend most of my time managing the Facebook page for GetYourBellyOut, interacting on the group and blogging. I had never blogged before the campaign began, it was just another communication method to help spread the word about the campaign and potentially reach a wider target audience. I have continued to blog as I have received some lovely responses from people telling me that I write really well and have explained exactly how they feel. Anything that makes even just one person feel less isolated is worth doing in my opinion. I also have control of the #GetYourBellyOut Pinterest account although I'm not particularly active because it's not really a relevant platform for our audience and the opportunity for interaction is minimal.
I work for a marketing company and the manager of our sister company (Sharon), very kindly bought our web domain and hosts our site completely free of charge! It just goes to show that it is not always what you know, it's who you know! I wrote the web content and Victoria produced a wonderful belly collage with just a small snippet of the thousands and thousands of bellies that have supported the campaign so far!
Lorna is our merchandise guru. She loves being organised and the busy merchandise workload is the perfect opportunity to make the best of her skills. She also attends any meets that she can in order to represent #GetYourBellyOut and again sell merchandise. 
Gem has control of the #GetYourBellyOut Twitter account and is constantly canvassing IBDers to become members of the Facebook group, as well making sure she regularly interacts with the already existing members of the group. Gem has been an avid fundraiser for Crohn's & Colitis UK for many years and it was her JustGiving text number promotion in one of the Facebook groups that prompted me to set one up in the first place. 
What sort of feedback have you heard from people after they see the belly photos, posters and merchandise?

The response from people has been brilliant. It still makes me very emotional to see people declaring on their own personal social media accounts that they have IBD or an ostomy etc as many of these people have been to embarrassed to share their story before! Every time someone posts their belly photo they always receive such an overwhelming response and show of support, even if to begin with they are only ready to share privately within the group. The bellies shared on the Facebook page are also always commandeered by people who they have never met and sometimes never even spoken to before! People who just want to show their support!
As soon as we began selling merchandise we realised what a success it would be. People snapped up the wristbands and car window stickers and began requesting other merchandise that they would like! 
Our awareness posters have had lots shares and the campaign info poster has been printed and distributed all over the world by our loyal supporters. 
For anyone who has just been diagnosed with IBD, what kind of support is there within the #GetYourBellyOut group? 

#GetYourBellyOut group members range from people who have suffered from a very young age to those diagnosed much in later life. There are members who have been battling for years and members that have just been diagnosed. Some have had surgery and some haven't, some are still in the process of going through tests to see if they have IBD at all and others are just supporters of the campaign, friends or family. With such a diverse range of backgrounds, any newbie to the IBD world will be welcomed with open arms and hopefully given advice on their personal situation by others that have been through the same or very similar. 
The effects of IBD are not just physical and it is often the mental support that people need the group for too. Everybody deals with things in their own way but knowing that you're not alone and that you have somewhere to talk openly with people who understand and won't judge you is of great importance. You can also ask any questions you like without feeling silly because at some point or another, we were all newly diagnosed with no knowledge of IBD. The group has so many members that sometimes the odd post may get missed but the rules which are pinned to the top of the group also include a list of all of the admin who are always on hand should anyone wish to have a question asked on their behalf, ask questions directly or just want to talk or rant. If we cannot personally help, the chances are that we will know someone who can. 
What has been the biggest challenge for you during the campaign?

Firstly, communicating purely via inbox is a challenge in itself especially when you've never met these people in real life. You don't know each other's humour or personality traits. I tend to be sarcastic a lot but if someone doesn't know that and isn't aware of the tone in which a comment was meant then it can easily get misconstrued. 
There have been a few big challenges along the way, for example initially when we first began it was a challenge to get people involved. Some people need to see others taking part before having the confidence to take the leap themselves and locating people via social media takes an enormous amount of time and energy, whether that be searching keywords such as IBD, Crohns, Colitis, Ostomy etc on Twitter or joining IBD Facebook groups and forums and then engaging with like minded people, willing to share their stories, bare their secrets and raise awareness.
At the start, whilst trying to build a following for the campaign it did suck an awful lot of time out of all of us to the point where we barely slept or ate and all ended up completely worn out. Finding the right balance between work, domestic duties, having a social life and running a campaign was one hell of a task!
Add to that the fact that Lorna had just had a resection and ileostomy when she joined the campaign. 
Gem had been suffering with her most recent Crohn's flare since February and I had been in pain for an awful long time with recurrent Pouchitis and what I suspected were strictures so we were all fitting in appointments, scans, camera tests and X-rays whenever needed. 
I am currently three days post op from my reversal to reconnect my jpouch. 
Healing really fast!!

This is the second lot of surgery since the campaign began (resection, jpouch revision and temp ileostomy in July).
Gem is currently in hospital after having a resection due to a bowel perforation just a few short weeks ago, and is having a hard really hard time recovering as her Crohn's is still active and small intestine inflamed. 
BUT, for me personally the BIGGEST challenge has been seeing people that I have come to care very much about being so poorly and not being able to help. It takes a huge amount of strength to wipe away someone else's tears whilst inside you're crying with them and for them.

Has your work on the #GetYourBellyOut campaign changed the way you view your own condition? Have you learnt anything new about IBD?

I did a lot of research into my condition and medications so have always been educated enough to hold my own when speaking to medical specialists and novices, explaining the ins and outs of surgical procedures, side effects, medical terminology and such to create a better understanding for those closest to me. I don't feel that the campaign has changed the way I view my condition but it has changed the way I view me. I had such a horrendous time with my first ileostomy that ever needing one again would have been the end of the line for me. I have been inspired by the #GetYourBellyOut supporters and the faith they show me they have in me eventually gave me faith in me too. As dramatic as it sounds, I think the bellies may well have saved my life. 


What has been the most exciting part about the #GetYourBellyOut campaign so far? 

I still get excited over the small things. Planning Twitter takeovers, or reading a positive mention in a blog or editorial. Each little milestone still has me buzzing with excitement. When the campaign began I never imagined we would end up where we are. The first twitter takeover - people actually joined in! Campaign videos that had me crying all the way through! Starting selling merchandise and people being so excited when they received them and then expanding the range. Starting the group and watching the members grow. Meeting and having the backing of national charity Crohn's & Colitis UK! We were thrilled at making £100 and now we're at over £15,00! 


Reaching over 5,000 fans on the Facebook page! Having the website built, never did I imagine such a thing! Even thinking of new ways to spread awareness that little bit further has me nearly wetting myself with excitement! 
And now, NOW we have the ball! A ball that will mark 1 whole years work and hopefully raise much more cash for charity and form some even stronger bonds between some really great people! 
In three words, how would you describe the #GetYourBellyOut campaign?

Inspirational. United. Family.

Finally, how do you see the #GetYourBellyOut campaign developing in the future? And is there anything coming up for people to look out for? 

We have the Birmingham Birthday Belly Ball (all the B's) coming up in March 2015 but unfortunately that's all I can tell you about for now! Sssshhhh! 
I honestly don't know how far we can take it but I would like to keep going for as long as it is humanly possible. I want to continue uniting like minded people with IBD, who want to help us achieve our mission and who want to support each other, dish out cuddles when necessary and cheer each other up on the dark days that we all have! I want to keep raising money until a cure is found and I want to raise awareness to the point where everyone knows what IBD is in the same way that everyone knows what cancer is. I want to scoop up every fragile little IBDer that is struggling and let them know that they never need to feel like they're fighting their battle alone.

There IS light at the end of the tunnel. That light is #GetYourBellyOut!





Reversal - in pictures

I tried to write a hospital diary last time which didn't go very well as I was far too poorly a lot of the time to write and then couldn't remember everything!

This time my very short stay has been documented in pictures instead

Advanced nutrition plan! 4 between 4 & 8 Tuesday evening and 2 before 6 Wednesday morning. I was up at 5.20am drinking, packing and having a bath.


Set off at 9am.


A long wait at hosp, sat in my gown and stockings...


Far too much time to think! 


Ooopsie, clumsy nurse!


PJs on, cup of tea and of course new belly image! 


No sleep. Too bright!! Too many people pooing and vomiting and snoring and shouting...


Free from drips! Cannulars coming out today and I can eat. I go outside and FaceTime my lovely Gemmy.


Friday morning and I'm free to go. Meds bought, dressings changed and waiting for a lift. 


To my mummies for a little R & R! 

Wednesday, 5 November 2014

Hi, you don't know me but I know you...

I understand your journey. I've felt your fear. I've endured your pain. 

I may not know you but I've walked the road you're walking. I see the fear in your eyes hiding behind that sparkle. I see the sadness that weighs heavy in your heart because your life hasn't turned out quite the way you wanted. I see the pain you try to cover up with a smile and a joke.

I've felt weakness and not asked for a hand up. I've felt tired yet not succumbed to sleep. I've felt pain but refused to scream. I've felt sadness but fought the urge to cry. I've felt the need to talk but kept my mouth shut. Ive felt anger and locked it all in. I've felt defeated but carried on regardless. 

I know you're scared. 

Do not walk alone for the road is dark and narrow. 

That road you are walking, you are not walking alone. You may not see me but I am there. 

When you need me let me know and I'll show myself and walk with you. The moonlight will break through the trees and that once narrow road will widen. I'll hold the lamp and I'll lead the way xxx




Monday, 3 November 2014

My mother - my friend - my life

I am probably the least sensitive person I know - or at least I was...
I feel like the Grinch screeching 'I'm feeling' and being completely gutted about the whole situation or wiping my watery eyes, 'I'm leaking'.

The Adele song, 'I won't let you close enough to hurt me' may well have been written about me...

But, it's my mum, it's different... So there!

Me and my mum have had a strange relationship in the past. We never got on when I was growing up and I mean really didn't get on, not like the usual teenage / parent relationship. I told a councillor years ago that I thought my mum had never loved me until I was poorly and she nearly lost me. I couldn't believe what that councillor had just 'made' me say! Who thinks that of their own mother? 

It wasn't unjustified. I told my mum about the conversation and repeated what I had said. Her response wasn't what you would expect. She didn't say don't be silly. She didn't say your my daughter I've always loved you. She said.... 'I can't help it, it's not my fault'. So there you are. I earned my mothers love by nearly dying. Clever me! She's honest, I will give her that. Not many people would sit next to a hospital bed and when asked by their daughter 'am I going to die'? Look them straight back in the eye and say 'I don't know'. Now, I don't like being lied too, in fact I despise it, but if there's ever a time and a place to lie, that would be it. 

Anyway, she loves me now. She thinks I'm great. She thinks I'm cute and sweet and funny and smart and beautiful and strong and she is proud! She laughs at the way that men (silly ones) become obsessed with me and the way I handle it. She laughs at the fact that I can't stand still, that I sing and dance all the time. She likes my honesty. She carries a photograph of her 26 year old daughter to show people like new mums to do of their babies. She tells everyone about #GetYourBellyOut even though she has absolutely no comprehension of how the Internet works. She just generally likes me. And I like her. 


She's come to the realisation that no matter who walks in to and out of her life, I will be the one constant. I will be the one that loves her forever, even if I do have to tell her off for being a twat regularly.

We're ok me and her. We never used to touch. We had weird personal space issues. Don't get me wrong there's still certainly no love fest but we can have a slow dance and we kiss when we separate. 

She looks for things that she thinks I will like doing because she wants to spend time with me. She will think of silly things to make at Xmas because she knows it makes me happy. She will happily collect conkers with me, pointing out the ones that are unopened for me to break open! She's a good mum. She took her time but she got there. I was a shit daughter. I took my time but I got there too. Swings and roundabouts. We both fucked up at some time or another. 

The very worst thing about this illness without a shadow of a doubt is seeing what it does to my mum. I don't think there is anything in the world worse than watching your child suffer. I see her trying to tell my story and I see her eyes fill with tears. I see her telling people how hard I've had it but I see the pain inside her. 

Seeing other people hurting because of me is something that I can't deal with which is why I don't accept visitors in the hospital but I do accept my mum. Why? Why, when I know how much it hurts her do I let her see me like that? It's because she's my mum and I need her so I selfishly put her through it. 


My mums not well. She has some of the early symptoms of UC. I have had UC for 7 years now, I was diagnosed at 19. My mums 46. I know she is worried. I'm hoping the doctors will get her looked at pretty quickly because of my history. Her first thoughts on the matter were that she didn't want a camera up her bum. *flings arms open* welcome to my world! 

Let's all keep our fingers crossed for IBS diagnosis! I honestly don't know what I will do if she is diagnosed the same. I'll do everything I can. I'll answer everything I can. I'll support in every possible way I can but I won't be able to fix it.  

Now I'm stumped. 

I don't know what to say. 

I don't know how to finish because I have no conclusion or end to this post. 

Thank you for reading my random Psychoanalytic / venting / what should probably have been kept as a diary entry post...  

Sunday, 2 November 2014

Unwanted house guest

You know the type... 
Turn up unannounced. 
Ruin your plans (even if your plans did only involve laying around in your PJs all day and drifting in and out of consciousness). 
Expect you to cater to their needs.
Outstay their welcome. 
Leave traces of themselves for you to clear up. 

Well that pretty much sums up IBD to me. 

In my case his arrival was completely UNANNOUNCED. He came storming in with not even a hint of a warning with his stinking attitude and the need to screw me over. RUINING MY PLANS of trying to remain attractive for as long as possible in my very new relationship! Of course he has also taken away many nights and days out, festivals and work events too! 

Life suddenly has to change, his dietary requirements, eating and medication routines need CATERING FOR!

When I was told I had Ulcerative Colitis I was also told it was usually easily manageable with medication and most people can continue to lead a normal and happy life with maybe a few changes to diet etc. I was expecting to be miraculously better real soon and back to normal in no time time at all. Fat chance! Consider his welcome well and truly OUTSTAYED! No getting rid of him. In fact the only way to be rid of him was to cut him out entirely. 

Does that mean you can return back to normal? Does it heck! It means you  crap in a bag for a year whilst you decide how important spawning children is. It means you need more surgery and your insides mutilated. It means even when you're lucky enough to poo through your arse again that it happens at least 8 times a day! You have to plan trips around toilet stops. You can still get IBD in your newly formed internal pouch. Even if you don't you can still get the symptoms of a flare in the rest of your body. Bad joints, skin problems, fatigue, other related autoimmune issues, the list goes on.


The only difference is that with an unwanted house guest you can evict them when it gets too much. You don't have the option to throw him out and lock the door.

With IBD, TRACES OF HIM REMAIN part of your life and your body for as long as you live... 

So what do you do about it? Do you shout and scream and get angry at him every day? Do you ignore him and pretend he doesn't exist? Do you cry yourself to sleep every night just wishing he would go away?

Well maybe you do for a while... It won't help but it is part of the journey.   Eventually you learn to co-exist. Maybe not harmoniously because he is still a right royal pain in the ass but you are together forever and acceptance is a massive step towards understanding and coping. 

So what do I suggest? Invite him in for a cuppa. Figure out what he likes and what he doesn't and don't anger him. Don't get stressed because then he will too and he will make sure you pay for it.


Take him by the hand and walk off into the sunset with the understanding that this is now your life and whilst it might not be the happily ever after you were looking for it's the only ever after you've got.




Tuesday, 21 October 2014

A book to remember

I bought the Kindle version of Matthew Williamson's book, 'From the inside out'. I fully intend to buy a paperback version before our meet (which WILL happen at some point in the not so distant future I am sure) to have signed by the man himself! 

As I lay here in the dark at 5.30am coming to the end of the book I am crying. I am crying because something amazing happened, because we did enough for someone to be mentioned in his book!


Matt has truly outdone himself here. I am probably bias as I already have a great fondness for him and in all honesty a book full of IBD diaries is unlikely to be your cup of tea unless you suffer with some form of bowel condition yourself...

But isn't that always the case? Does anyone that isn't directly affected by IBD really give a fuck about the #GetYourBellyOut campaign? 

In short, no they don't, but they will because I will not stop until they do! 

So, back to Matthew and his book (it feels more like our book). Matthew tells his own story which is broken up by diaries from other IBD sufferers, including #GetYourBellyOut co-founders, Welsh UCer Victoria Marie and our loveable, Crohnie Manc, Lorna Haymes. I love the way Matthew writes, it's honest and funny and I feel you often see glimpses of his true character. He describes his ten year long battle and his thought processes throughout. To me this is what is most important. We can all tell our physical story but putting pen to paper to declare your 'thoughts' is a different matter.


My physical story is as follows (snatched from our new website) plug, plug, plug! www.getyourbellyout.co.uk

Diagnosed with Ulcerative Colitis aged 19 in 2007. Subtotal colectomy (colon removed) & temp ileostomy within a week.
Jpouch creation & loop ileostomy in 2008.
Take down surgery (reversal) in 2009.
Chronic pouchitis, cuffitis, strictures & suspected Crohn’s.
Resection, pouch revision and temp ileostomy in 2014.
Medications tried: Asacol, Mesalazine, Prednisone, Ad cal, Budesonide/Entecort, Mesalazine enemas, Azathioprine, VSL#3, Metronidazole; Ciprafloxacin, Codeine, Tramadol, Oramorph, Fentanyl & Butrans Patches,
My emotional journey? My thoughts? My feelings? Well your guess is as good as mine! (Or so I'll have you believe). I write a few things in blogs when I feel I can. I wish I could share everything but unfortunately that's not a place I want to take myself back to. Memories lay buried in a part of my brain that I do not wish to access. 
I do feel there are things that Matthew is not telling us. Maybe he didn't want to access ALL of his memories either and I certainty can't blame him for that but what he has shared bought tears to my eyes and a warmth to my heart. 
I have absolutely no idea whether #GetYourBellyOut is here to stay or whether it will fade away and I'll look back at 80 years old and think 'That was a good year'. 
What I do know is that there will be a box. A box labelled 'Look what we did'. A box that contains a web domain certificate, one of each of our merchandise and a book. A book to remember xxx

Lockdown

I always claim I deal with emotion well. I am beginning to think that may be a matter of opinion. 

What do you do when you feel yourself getting wound up, angry stressed, upset? Well I put those emotions away until I choose to deal with them. I don't know if everyone is capable of doing that? They get sent to the 'I'll deal with this later' part of my brain. 

I store them all up and then choose a day or two (depending on what I have collected) to go into hiding, or as I prefer call it, 'lockdown'. 

Lockdown is MY time to do what I want with. It pretty much always involves eating my favourite food and not getting out of my PJs. I may choose to cry, get angry, think things through or write things down but the main and most important part of lockdown is avoiding any kind of social interaction. This does not mean that if I want to leave the house that I can't, it just means I pretend people don't exist if I do and sometimes watching the dogs run around a field whilst I sit with my headphones in is just the kind of activity I need. If it's raining that's even better! There's nothing more satisfying than walking in the rain when you have allocated lockdown time. When else can you be completely and utterly miserable? 


You may think I'm odd. I mean how can being miserable make me better and happier? Well my theory is that it's because I am in control, that I choose when, where and how. 

I have the ability to take myself to place in my mind where no emotion or thoughts exist. I only ever really need this skill whilst in hospital because if I had to think and feel all I would think is 'I hate my life, get me out of here' and all I would feel would be negative emotions and ain't nobody got time for that shit!

Make no sense? Well it works for me! I emerge like a butterfly, ready to spread my wings and face the world! 


I'd be interested to know about other peoples coping mechanisms? I have been particularly stressed out and short tempered lately but I can't quite figure out why so I have chosen to start on online CBT (Cognitive Behavioural Therapy) course which is recommended by mental health charity, Mind. 

So far I have learnt that I am currently in the mid to high range with depression symptoms and low for anxiety symptoms. I tend to think I know myself well but it has been good and it has identified one thing about my personality that I wasn't aware of. 

If you fancy a go yourself have a look for moodgym online! 

Bye for now! XxX

Tuesday, 9 September 2014

Tick Tock, Tick Tock...

I’m not one to get scared or worry. Life has taught me that life is waaay to short for that shit! But here I am. A little bit scared…

Whilst having a resection last month my pouch was torn and I woke up with a temporary ileostomy. My stoma’s name is Porta in case you were wondering. We’re getting on just fine which is something that I never thought would happen before the #GetYourBellyOut campaign began.

I keep finding myself wondering why I feel so ‘normal’. I expected to resent him. I don’t. Not once have I had one bad thought about him, it’s just been a bit inconvenient sometimes having to change my bag and revolve my day around what I need to do and when.

On Thursday I have my X-ray to see if my pouch is healed and I will then be sent an op date for my reversal.

Op’s don’t scare me. They never have. The worst one was the Jpouch creation and knowing how it could affect my fertility. So it isn’t the op itself that has me worried.

When I saw the surgeon for my follow up my only question was ‘what are the chances I will be reversed before Christmas’? (apart from the, ‘What on earth is this thing sticking out of incision*).
He replied ‘Good actually’.

*That ‘thing’ was a heavy duty plastic stitch by the way which very much resembled a piece of metal. Me and the surgeon weren’t sure it wasn’t a staple until he checked my notes and told me I didn’t have any. Anyway, I made it stick out as much as possible and the nurse snipped it off and all was well with the world again.

The news that reversal would be soon pleased me. He said I will be booked in for an X-ray ASAP. Good, that’s very good.

So WHY, when the receptionist rang with my X-ray appointment date did I freak out? Maybe it’s because it is all happening so fast. I barely had time to get used to Porta and already plans are well underway to take him away.

Maybe it’s because this is the first op that I have had a choice about.

The first one was a ‘Do or die’ situation.

The second was just a clean out procedure because the surgeon was a dumb ass.

The third I NEEDED for my sanity! My stoma was awful, my bag leaked all the time, I had no confidence, I was depressed, I wouldn’t leave the house unless I really needed too and the constant discomfort was sucking the life out of me.

The fourth (my reversal) was needed to rectify my insanity all together.
The fifth was booked as an emergency as the strictures had been there a long time and were extremely narrow. Not having it was not an option as the pain I had been in for the last two years was horrific. 

BUT, this next op, I don’t NEED.

Don’t get me wrong, I have had endless camera’s, scans, X-rays in between the surgeries and have twice been in to get an undissolved stitch removed from under the skin at my old stoma site (which is still there by the way) but they are nothing compared to actual ops.

What scares me is the unknown. I am getting on just fine as I am. As I have said I have had recurrent pouchitis for the last five years. My pouch was already in the ‘last chance saloon’ district with only Imfliximab left to try before calling it a pouch failure.

I know that some people have a pouch rest for 3-6 months and when they are reconnected everything is good but there is absolutely nothing to say that this will be the case with me. The pouchitis has been knackering. Living with a constant pain/discomfort wears you out and grinds you down. Do I really want to risk doing that to myself again? But if I don’t will I always wonder what if I had.

I don’t fear pain as such but surely no one in their right mind would ever purposely put themselves in a position that would mean months of endless pain or discomfort?

I am scared because for the first time in a very long time I have a big decision to make that could have big impact on my life and for once I don’t have the answers.

That’s what I do. I have answers. I always know what to do and what to advise other people to do and I’m very rarely wrong. That’s the thing with IBD isn't it, you can’t pre-empt the route the disease will take.

Do I roll the dice and see what happens because the worst that can happen is needing two more ops; one to be reconnected and one to remove the pouch and have a permanent ileostomy.

Or do I stay as I am and eventually have one more op to my pouch and have my butt sewed up?

I have pro’s and cons for each and one doesn't seem to massively outweigh the other.



 See that? The clocks ticking...

Monday, 8 September 2014

I have an incurable autoimmune disease - what’s the best thing that’s ever happened to you?

Who would have thought you could make some really great friends BECAUSE you have a chronic illness? 

Well that’s what has happened to me… 

I suppose it is a bit like being an alcoholic and going to AA. 


After months, maybe years of trying to be normal, being angry that your family and friends aren’t listening or just don’t get it, you find yourself in a room full of people who see your struggle. You don’t even have to say any words. Sometimes it’s enough to just sit back and watch… and listen.

You see people just starting out on their journey and you understand the struggles that will come. 

You see people who have struggled for years that have grown strong and they’re still getting stronger. 

You see people who can’t fight anymore, that want to give up because they are really, desperately tired. 

You see people who are a true inspiration and you know that they will make a difference to your life. 

I feel lucky to have IBD. There, I said it! Had I not been ill I would never have come across these wonderful and inspiring people.

I would never have learnt who my true friends are, I would never have realised how much my family love me and I’m pretty certain that had I not been ill I would have continued to drink an unhealthy amount and god only knows where I would be now. 

I have lost a lot of ‘friends’ who resented my moaning, my letting them down because ‘I just really don’t feel like it tonight’.  

This doesn’t upset me, quite the opposite in fact, I have separated the wheat from the chaff so to speak and it feels good. I know that the people that I make time for now are deserving of it and I am completely uninterested in those that aren’t. My mum says I’m rude, I just think I’m no fake and will not pretend to be interested in someone’s life when I’m really not. It takes a lot for me to let people in now. This may be seen as a negative to some but I believe that the people who really want to be in your life will stick around and keep hammering at those barriers until they are mere bumps in the road. In my mind, these are the people that have earnt my loyalty. 

The friends I have now may be few and far between but they are real. 

My relationship with my mum when I was younger was terrible. Partly my fault and partly hers;  I was a shit and so was she. She didn’t like me and she didn’t love me until she nearly lost me. I didn’t like her until she loved me.  

Having been so ill and having been in so much pain makes me grateful for every day that I can physically get out of bed. It doesn’t matter how many painkillers I have to take to make it possible for me to get up and carry on, what matters is that I take them and I do it. 

I am stronger now than I have ever been. I know what’s important and I know what isn’t. I know what I want and I won’t settle for anything less. 

I, like many others I am sure, had a ‘please wipe feet here’ sign on my forehead for quite some time but I have taken it down, incinerated it and flushed the ashes down the toilet!  

I have my faults, I know this but I all in all I am good person and knowing that makes me more confident in the decisions I make which in turn makes me happy. 

Had I not been ill, I do not think I would have been as happy as I am now or as comfortable in my own skin. I wouldn’t have met the many people online that help me on a daily basis without even knowing it. For many years I felt like I was stranded and alone on an Island, but now I have company. 

I get up every day and I am grateful I can do that.
I sort my lovely doggies out and I am grateful that I have them.
I go to work and I am grateful that I have a job.
On the way I wear my headphones and I sing like no one can hear me and I’m grateful that I am happy enough to do that.
I go to the shops on the way home and I am grateful that I can afford food.
I get home and I am grateful that I have one.
I log into Facebook, respond to a few notifications send a few texts and I am grateful for every person that is on the other end.
I get in the bath and I am grateful for my body.
I change my bag and I am grateful that for two months I have had no pain.
I dry my hair and I’m grateful it’s getting healthier.
I dance around the bedroom and I’m grateful that today, I have the energy. 

I am grateful BECAUSE I have IBD. Had I not been ill, it’s safe to say that I would still be a shit.

The hospital diary

I made the decision not to declare online when my surgery was. Partly because I don’t want the nosy people pretending they care and partly because the people that actually care then worry and want updates and I know from previous ops that I make a very grumpy hospital patient and will just ignore people, making them worry more. I cannot put in to words my hatred of hospitals. I have been in them and been tret like shit in them far too often and for far too long. It’s best to keep people away so I can cry and feel sorry for myself in peace.  

When I’m in hospital, all I want to do is go home… 

Operations genuinely do not worry me. I’ll do what I have to do and don’t worry about what might go wrong because let’s face it, things might, but worrying about it won’t stop it. I have had complications with or after all my surgeries so far so am prepared for eventuality. 

To find out how I got to where I am now, please read my previous blog ‘forever in limbo’ here

Following on from the above blog… I had the barium Xray, the pain whilst the barium was forced through my intestine was horrendous. I very nearly cried and I am no wuss! I got a letter from the consultant stating that the xray had identified 2 very tight strictures. That was it. So I rang the PA who informed that I would need to call back on July 10th as there would be a meeting on July 9th to discuss it and decide what happened from there.  

I was confused as to what had happened to my Imfliximab option as it hadn’t been mentioned for a while. I finally found out that I cannot have Imfliximab until the strictures are fixed as it’s known to make them worse! I was put back on Prednisone to tide me over and was awaiting the news that my strictures could be dilated so I could start the Imfliximab and hopefully be get in remission. Happy days! 
I didn’t call the surgeon on the 10th because he called me on the 9th. ‘As you know we were discussing whether we could dilate your strictures without having to operate. The answer is no’. 

What the?!

Having surgery was not even on my radar! Certainly not for the strictures anyway! That was NOT on my list of ‘things to do’ this year! I genuinely hadn’t even considered it as an option! Not only that but he would like to admit me as an emergency and have me in within the next 3 weeks. The sooner he can remove them, the sooner I can start Imfliximab. He explained it could get complicated because I already have a pouch and one of the areas of narrowing is at the entrance of the pouch. He will obviously try to save my pouch if he can but can’t give any assurances that I won’t wake up with an ileostomy. A few months ago this would have been the worst news in the world and I would have no doubt spent the next 5 days in tears. Thanks to the #GetYourBellyOut campaign, I think I’m going to be alright. 

I have written about how the #GetYourBellyOut campaign has saved my life before so the explanation of the ‘worst news in the world’ as stated above is explained here.

I asked if it had been clarified yet whether the strictures were due to Crohn’s or scar tissue. He said it looks like Crohn’s. It looks like inflammation rather than scar tissue which makes sense to me as the pain in my small intestine comes along with the pouch pain and as far as I’m concerned, having ulcers in the pouch surely means Crohn’s disease as UC does not affect the small intestine and that’s what my pouch is made from! I don’t know why I can figure this out but no one else can?! 

Anyway, so the surgeons PA called me on the 10th, they have booked my op in for the 16th but I will be admitted on the 15th as I need to do pre op stuff and bowel prep ready for the morning. I am the first on the list and the theatre has been booked for 6 hours. Seems like a long time when you consider the pouch only took 8 hours and takedown surgery about an hour, although I suppose I should be grateful to know that at least they won’t be rushing my op and you never know what will be found in there and what needs to be done. 

I’m a list fan. I had a list of things to pack. A list of my favourite things to eat which I won’t be able to eat for a while post op. A list of thing I can eat after op. A list of all the things I need to buy on the previous lists… 

I also had a mad rush at work. I set on a new staff member Monday and by Wednesday I have declared I’m leaving her to fend for herself! A lot of planning and work went in to a structured training plan and I also had to hand over client accounts to my boss who is officially on maternity leave and now covering my work. This could not really have come at a worse time! It also means I now won’t make it to the festival that was the only plan I had all year. MASSIVE ANNOYANCE. 

I spent the weekend eating my favourite food with my favourite people and doing my shopping. I spent Monday trying to organise my workload which I was still doing from home late Monday night!

Because I am not logging the events of my time in the hospital live on the internet I have decided to diary my stay and upload it to my blog.  

I hope to log some stuff every day and do not intend edit it before I upload it so I look forward to reading back my drugged up ramblings and seeing how coherent I am. 

Day 1:

Admission (the hospital kind, I’ve not been naughty) 

I woke up at 5.40 and laid in bed checking Facebook. I got up at 6, got washed, dressed and packed my case (due to lack of time yesterday)! I fed my dogs and tortoise and took my meds, it kinda felt like I was going to work apart from the suitcase packing…


I don’t pack lightly. I HATE hospitals and intend to be as ignorant as possible while here. I have my laptop with series 1-4 of Game Of Thrones on. I have a notebook in case I can’t be bothered to turn on the laptop. I have a book I probably won’t read if the last few ops I’ve had are anything to go by. I have always been far too tired to concentrate on anything like puzzles or reading. My bags were hidden on the oven so the dogs didn’t see them. I didn’t want them to know. Silly? Maybe. Bothered? No. Those dogs ARE my life. 

I washed the pots, I put fresh bedding on because I’m having a new bed delivered and put up while I’m away and my mum has a broken finger so can’t be expected to be changing my bedding etc. 

I then spent half an hour laid on the sofa with the dogs. My Ginster knew something was up. He’s been moody with me. I made him lay with me anyway. I can’t think of anything in the world I wanted to do more than cuddle my dogs.



My dad arrived at 8.30. I tried to kiss the dogs and just leave but instead I cried my way out the way house. I’m also trying my very best not to cry about it now. My mum is having them while I’m in hospital. She’s also having me when I get out. I wasn’t going to allow it. My usual ‘I don’t need your help’ facade, and then I remembered that I can’t pick the dogs up or the gate to let them out… I also realised that I’m sure my mum would like to feel like she is helping her daughter when she needs it and that in reality, I could probably use the help. So, the stubbornness is on hold for now. I will be looked after. I have already delivered her all the food she will need to make me and made sure it’s all minimal effort.  

I went to fetch an internet dongle because the last two times I have been to this new hospital, I have had no internet access on my phone at all, then we set off for the hospital. On the way the surgeon’s secretary rang me to tell me that she needed me to come in to be admitted early. I need to be here for 7am tomorrow. I tell the secretary I am on my way now to be admitted today for pre op and bowel prep… ‘Oh, of course you are, silly me! I panicked when I saw 10.30 because you’re first on the list’. 

‘I hope the surgeons smarter than his secretary’. Those were my dad’s words but also my thoughts…

I arrive to be admitted. There is no bed for me. I have to sit in the day room until one becomes available. I’m already annoyed! I use this time to set up my new dongle. I need to do this as my phone has absolutely no internet access. I can ONLY send text messages when I have roaming on and I have absolutely no idea whether this is included in my contract. I assume not and that it will cost me a fortune. I’m more annoyed now! The dongle has no signal either. Yep, you guessed it, even more annoyed. My dad ends up leaving to fetch yet another dongle. This has ‘some’ signal which keeps dropping out but some signal is better than no signal. Already today I have spent £60 on internet just so I can catch up with my belly peeps from time to time and maybe do the odd bit of work coz I feel lost without both. On the plus side when I leave this shit hole I will have a whole lotta internet to use. Maybe I’ll take up watching porn.. Or streaming explicit videos and making people pay to watch. Might make me some of my £60 back…
I looked out of the window and I see this…



I might have signal down there! My mission is to find out how to get there and test the theory. There is a lift so even if I have two drips and a catheter, that little haven is doable! It’s only a haven if it has signal! If it does then I will reside there for the foreseeable future whenever possible! Straight outside the hospital entrance I have signal but it disappears when I walk through the doors! I don’t fancy standing out front with drips and catheters in my PJ’s but let’s see how desperate I become!
I went to REMIND the ward staff on reception that I AM STILL HERE at dinner time. ‘Do I have to buy my own dinner seen as I’m not officially here’? You could see by his face I hadn’t crossed mind but my request was met with the correct response. ‘We will sort you some dinner’. Then the cheeky little fuck tard had the cheek to ask me why I was even here when I wasn’t having surgery until tomorrow. Way to make someone feel unwelcome! I explained that it was an emergency so I hadn’t had time for a pre op and that in fact if it was up to me I wouldn’t be here a second longer than I have too. That ‘nurse’ is in my bad books already…
I did get fed, if you can call it food… A stale pork sandwich and a stone cold and very dry chocolate brownie… My favourite!

3pm someone bothered to come and see me and ask a few of the obligatory questions and listen to my chest. I should have a bed within the hour he said and then he buggered off. It’s 3.48 now and I’m ready to punch someone in the face. I could have been at work. I could have been at home with the dogs. Why was I here at 10.20am? WHY?!

I’ve had far too long to sit and think about how stupid this situation is today. 

I have been looking at it like this;

Tomorrow at 8.30am I will be taken for surgery. The man I just saw said I am having a small resection and pouch revision. I didn’t know I was having a pouch revision… Maybe that’s why I have a 6 hour op? He does not know whether I will be having open surgery or laparoscopic. I do not know whether I will wake up with a bag or not. I know nothing!

And why am I doing this? So that I can start Imfliximab (Remicade) that I have absolutely no guarantee of working! If I wake up tomorrow having just had a resection I will then have to wait until I’m fully better before starting Imfliximab. That is weeks of me still being in pain and this flare getting worse and worse because I am taking nothing to get it in remission because I will have shortly tapered off the Prednisone.
If I have pouchitis, I get three infusions of the Imfliximab and may not actually get funded for anymore. So when/if the pouchitis returns, I will need the pouch removed anyway.

If I have Crohn’s I can start Imfliximab and if it works, great! When it stops working, I can probably try Humira (Adalumibab) and when that stops working I need to be hoping there’s a new Crohn’s med I can try or I will need the pouch removed anyway, although I may have had another good few years in remission in the meantime!

This is all based on Imfliximab even working at all (I live in hope).

I don’t know what would be the better outcome. If I wake up and my pouch has been removed then all areas that have currently been affected by Pouchitis/Crohn’s and strictures will have been removed. That should mean no more pain (until the next flare). That may sound a little ‘glass half empty’ but since being diagnosed with IBD in 2007 I have never really experienced a long period of remission and cant’s imagine this starting now.

I believe I have Crohn’s. As stated before there are ulcers in my pouch which is made from small intestine. I know that UC does not affect the small intestine. Pouchitis does not create ulcers, just inflammation. I have ulcers in something made from my small intestine. Must be Crohn’s no?! 

Anyway, I have bored myself and you enough. I’m now on 4.20pm and I have no doubt I will be back later to complain about something else so for now I’m going to put my laptop away. I think I hear food being prepped outside (the day room is across from the kitchen) and I have no idea what time I can’t eat from because I’ve had no pre op or info since I’ve been here other than learning I am having a pouch revision! 

Bye for now!

****

I HAVE A BED!!

5.45 I got a bed, took over 7 and a half hours to get a bed! BUT I have a bed! The stoma nurse came around at 4.30. She was by far the most useful person I’ve met all day! First she marked me up on both sides for in case I need a stoma (beneath my tattoo, very kind! :D), she again confirmed that yes I am having pouch revision, she said it’s no longer possible to access the haven I saw out of the window earlier and she also confirmed that yes, I can have some tea. Hoorah!





So, back to my day room… dum de dum… had some pretty overcooked bacon and leek pasta for tea. It was homemade though so that’s 1 plus point for the goo. And then my bed was ready! But on the move I missed pudding L

Filled in the obligatory forms, got weighed and had bloods took. All the ladies on the ward came round in turns to say hello (have a nosy at me, see how ill I really am) and have a chat which was sweet. Of course I am the youngest by far as always! Lady in the end is screeching and crying that she wants to go home. Vic jokes, am I sure I’m not next to a mirror. Little does she know that, that is exactly how shit normally goes down when I’m in hospital.

I had a wander out through the front door to have a quick belly catch up and then came back in and got my PJ’s on, had a wash and made myself at home. I spent too long in the bathroom looking in the mirror at the stoma marks and felt a little bit sick for the first time. Fear of the unknown…

 

Tried the dongle from my ward bed, not a sausage! I don’t know what I’m going to do without my bellies. I feel lost already. It’s highly doubtful I will be traveling outside tomorrow for a catch up. I’ve been trying to organise everything so that it’s all reachable tomorrow without pulling anything or trying to lift anything. Remembering how ill I have been in the past is pretty depressing and not something I ever think about. This hospital smells like my old one and I don’t like it.

Had an ECG, told I’m nil by mouth from midnight, asked for a pee sample, MRSA swabs done and the docs will be round to chat and fill forms in later. It’s already 9.30. I could have been at work all day and still done this! Tut.

Hot chocolate and as many biscuits as she’s willing to give me (4)! Someone’s snoring already so I text my mum to say I forgot ear plugs, I don’t know how I forgot, it’s one of the worst things about the hospital the lack of sleep! 

I’m shattered now, it seems like it’s been a really long day. I’m in a lot of pain but fortunately the nurse forgot to take my pain meds away yet (I always have a row about this, they always win). 

Funny ward this. It’s a bowel ward yet there are 8 beds to 1 toilet. Everyone hearing me go for a poo is not my idea of fun. In my normal hospital there’s a wash area with a row cubicles with basins in, there isn’t one here… 

Anyway, that’s enough of the observations for tonight. I’m listening to all the ladies gassing about everything and nothing and it’s somehow now 10 o’clock already. It would be nice to go to sleep but I still have doctors to see whenever they feel like rocking up so… One narky Sahara coming right up!
Day 2: Op day. July 16th 

It’s actually the 24th :/ 

I am trying to piece bits of info together from notes I have made on my phone on the odd message I have sent!

Why do they insist on taking your obs (observations: Blood pressure, heart rate, temperature for those of you are unfamiliar) every few hours when you haven’t had surgery yet? You are keeping awake a very irritated lady!

4am, rudely awoken to stick my canular in and take some bloods! Cheers love!
Minutes later… ‘Sahara, you’re going to hate me, I have just thrown your bloods in the bin, I’m not going to lie. I need some more, sorry darling’ Tut, couldn’t be mad, she was far too mortified lol.

6am. Awoken for a nurse to come measure me up for my sexy stockings and bought me my sexy gown. Heaven knows why this had happen at 6 am when my ops not til 8.30… Totally beyond me!

I got up and walked outside the front of the hospital to put on an update on the belly group about being really busy before anyone notices I’ve fallen off the radar.

I’m a regular poster so people are bound to notice something fishy going on soon enough! I’ve also had to stop my #100HappyDays because I can’t really get any pics in here that don’t show where I am in all fairness wouldn’t have thought of anything yesterday, never mind today and I’m certainly doubtful about making it outside again, so I updated my personal Facebook too.
I’m back in bed now, ready to go back to sleep and a nurse just came to measure for my stockings… I told her they already did and she asked if someone had already done a checklist. I said no so someone will be back to do that shortly. Communication is obviously great here. Bye bye sleep. I can barely keep my eyes open!

In just a couple of hours I will be going under general anaesthetic. I quite like it in a weird way! It’s weird how fast you go! 

I still haven’t seen the surgeon so am still full of questions. I am assuming I will wake up with a drain and catheter but I like to be prepared for such things. My aim is to get up and mobile as soon as soon as I feel well enough to do so without pushing myself too hard or too fast. After losing the ability to walk after my first op, this sticks in my mind. 

I just heard someone arrive at reception that’s here to see me.
Intriguing…

10 minutes later and she still hasn’t arrived at my bed so I think I’ll close my eyes. 

Nope, someone came to do my checklist.

And it was the anaesthetist that was at reception but she’s beggared off elsewhere. 

I asked whether I would see the surgeon and get too ask all of my questions. She said she thought and would hope so but could not promise. Sam her name was. I remember because she is nice and I have seen her a few time since. 

The ladies on the ward are up and gabbing already and one was on the way to the loo but stopped for a chat.. I am taking my wash bag to get clean and dry shampoo’d and into me theatre gear!

7.40am, anaesthetist came – still not made this freshen up! I will  be having an epidural so looking forward to a pain free tummy for a change! 

NOW, back to these socks and a wash…

NOPE!! Specialist came! WAAAHHH!!

He drew me a picture of what they could see on the scan. There are two areas of stricture. One really long one which is the intestine leading to the Jpouch and then situated very close to that another much shorter and tighter stricture which looks like it is active with disease from scans. Removal of these may mean the intestine no longer reaches the pouch. The pouch may also need revising. 

Explained why this is complicated and why they cannot tell me whether I will wake up with a temp ileostomy, permanent ileostomy, Jpouch intact, or removed, revised, whether they can carry out strictureplasty, anything really until they get in because they just don’t know how bad it is and what I will be left with. They will be checking the rest of the small intestine too whilst in there. 

Finally washed and ready to rock!


Now I have told everyone at every possible opportunity that has asked me the same questions over and over again about the Butrans patch I have on and as I am sat waiting to have the epidural put in I mention it again in a discussion with the aneastetists when discussing post op pain medication. Well yes apparently it did matter so it’s a bloody good job I mentioned it again. Glad someone looking out for me.. ie, me! 

I laid down after the epidural and was disappointed when I just ‘woke up’. Where was my fun of counting down?! Huh! 

I was in recovery for some time apparently as my heart etc had been having a bit of a meltdown during the procedure. 

Obviously the first thing I did when I woke up in my oxygen mask was check around my belly. 

Yup, there it was, left hand side, massive stoma. Fab. I spend a while trying to fully regain consciousness properly and then ask the nurse when someone will be speaking with me about what was done, found, is this ileo permanent or temporary. Probably morning she tells me. She tells me its permanent but I have no idea who she is…
Back on the ward. Lots of text messages, cannot be bothered to respond. I am angry because I have no idea what’s what and I’m in awful lot of pain. 

They let me eat and drink on the ward straight away and I even had biscuits at bedtime! 

My mam and dad visited between 6 and 8. Unfortunately I have nothing to tell them. The nurse came round to check dressings etc when they were there so we all got to have a look at Porta (That's his name. He is going to be my Porta loo for quite some time) My god he was massive. No joke, it was like a big red peach stuck to my abdomen! 


There are drains and wires coming out of every orifice as usual! 

I've never had one hanging out me arse before though. That’s a new one!

Finally at 10.45pm my complaints of pain have been heard and I WANT TO SEE THE FUCKING SURGEON!!! A doctor AND nurse tried make me look stupid telling me I have an epidural. I know that love but the only thing that is numb is the whole of my fucking right leg and my left leg to my knee! The doctor came with an ice pack which completely proved my theory that where was absolutely no numbing to my stomach at all and a prescription is being written up for Oramorph, I have that at home and it doesn’t do shit! I demand they take the epidural out. I will NOT be able to walk while I can’t feel my legs. The nurse tries telling me you can never walk when you have an epidural and I tell her she is a blatant liar as my I have had one before when I had my pouch op and was fully mobile now get the fucking thing out. They do as they are told.

I’m worrying about the stoma. It’s huge and so cold. Worrying there’s no food making its way through here for a while. 

I text my mum in a panic about nighties, I DON’T OWN NIGHTIES!! I have PJ’s! The last time I needed nighties was when I was in for an op 5 years ago! All my planning and preparation and LISTS and I totally forgot the issue a catheter throws in when it’s hanging out your ‘floosie’.
Day 3: July 17th

7am and I ‘think’ I can hear my tummy gurgling. Hopefully that’s a good sign… My Oromorph never arrived last night… I was popping my own secret stash of tramadol instead. A nurse has just been to tell me that she has called the pain team but they don’t start til 9am.

When the doctors did their ward round, one of the surgeons that was working on me came and was telling me ‘You made us sweat! We had to get an extra surgeon in on the job. You were a mess’.
What does he want? A medal for doing his fecking job?! Coz they clearly don’t get paid enough do they? Now he wants a bunch of flowers and a bloody thank you note as well!

My pouch had been torn during the op so a TEMPORARY stoma had been created while the pouch healed. The plan is to be reconnected in 3 months, assuming the pouch is healed.

The pain team lady came early. I’ve got the morphine PCA up and the lovely lady administers a fair few shots to make me comfortable before buggering off.

My surgeon comes later and declares ‘I don’t know how you have been walking around and functioning for the last two years with the state of your insides’!
Coz I’m a hard bastard aren’t I… That and I had no choice coz my whinging had been ignored for quite some time. 

My mum and dad came for a 15 minute visit. I don’t really remember. I was off my face on morphine. I was throwing up bile before they left. I kept throwing up when they had gone. I was that out of it that I kept throwing up in the bowl, passing out and coming back round covered in sick having dropped the bowl on myself! That was two new nighties covered in vomit!

***

It’s taken months for me to return to my blog. I’m nearly 8 weeks post op now…
Anyway, back to the story! By the time I had been awake long enough to press the buzzer to alert the nurses you could barely see me or the hospital sheets for vomit. Two nurses held me sat up on the end of the bed while I drifted in and out of consciousness. I don’t remember them changing the bed but they did.
The whole day is pretty much a blur. I have vague memories of a nurse coming to do an ECG. Having an MRI scan and vomiting some more in the process and constant checks on my blood pressure and bloods being taken. I had an NG tube put in to remove the bile and stop me retching too. My bowel was so swollen that nothing could get through so only had one way out, which was up. This comes as no surprise to me as this has happened after every op I’ve had and you only have to look at my stoma to see the extent of the swelling. 

Some (no idea how many) hours later and I’m laid in the hospital bed surrounded by all the doctors I had seen so far plus a few! I could hear them talking about me, debating what was wrong, how to fix it and talking about how shallow my breathing was. I tried to breathe deeper but I couldn’t. They shone torches into my eyes, prodded and poked me, shouted my name but I could move a muscle to tell them I could hear them. 

FINALLY I was brought up back to the surface after a few lots of Naloxone shot straight into my wrists which left some pretty heft bruises! As the morphine wore of the pain was horrendous and I was screaming in agony. And then I was asleep.



The next morning I demand to see a doc to tell me what the feck happened yesterday! He tells me that the anaesthetist had overdosed me. It might just be my shoddy memory but I don’t remember seeing an anaesthetist after the general anaesthetic. Why would I have? Apparently they had filed a report that the wrong line had been put in and whatever it is that is supposed to stop the PCA administering morphine didn’t exist. It was the pain team woman who bought my PCA and connected me up so I’m pretty sure the error must have been hers…

Now with my NG tube I have one extra tube to the ones I already had.

Wanna play a game? Guess which comes out of where!


The docs try to persuade me to have the PCA back up. It’s not happening, I opt for being stabbed in the arm with morphine every hour instead. 

After 2 days of the NG tube and nil by mouth I’m whimpering and asking the doc to take it out. He had the weirdest way of checking for bile build up that I’ve ever known. He excuses himself for his next actions, puts his head on my boobs (his ears just underneath where my stomach is) and shook me from side to side.

Nope, there’s still plenty in there. It’s staying in’ and waltzes off!



In an attempt to shrink my stoma, a nurse pours sugar on him. This is the surgeons request… Didn’t work may I add but apparently sometimes it does!
I can’t speak when the NG tube is in. How come everyone else can? One word and I gag. My throat is sore and I am in a foul mood.
Slowly the tubes are removed. After 5 days the NG tube is removed too and I’m allowed to eat. It stays down, Porta starts to poop and we’re on the road to recovery!
10 days after the op and I’m allowed to go home. Well, to my mums to be looked after at least. Progress was slow, I was pathetic for a good few days but what do you expect when you’re 6 stone 4 with very little appetite and no muscle. I looked horrendous and I felt horrendous.
Not even four weeks after the op and I returned to work. Lounging around at home is enough to drive me insane.


I am now waiting for the Xray to check my pouch is healed and all being well, I will be reconnected by Xmas.