Tag Archives: Ulcerative Colitis

Get Your Belly Out for Crohns and Colitis!

Get Your Belly Out

for Crohns and Colitis!

Life takes guts

Have you heard about the #GetYourBellyOut campaign for Crohns and Colitis awareness?  Because if you haven’t then you’re missing out on one of the biggest, most fantastic, fun awareness/charity campaigns ever.  I really do have to tell you about it, because it’s brilliant.

#GetYourBellyOut for Crohns and Colitis!

#GetYourBellyOut for Crohns and Colitis!

I suffer with Ulcerative Colitis so this campaign is very close to my heart.  Thankfully I’m in remission at the minute – although the disease will never go away and I will have to take a cocktail of drugs for the rest of my life to keep it at bay.  But this in’t a sob story, this is a story about a lot of people uniting, being brave and facing their illness head on.

By way of explanation: Inflammatory Bowel Diseases (IBD) are something that are not often spoken of, I suspect it’s because a lot of people are ashamed of the symptoms.  Basically your immune system attacks itself and IBD’s specifically target the bowel.  The inflammation and ulceration is so bad that many people spend hours and hours in a day or throughout the night on the loo, dealing with horrific cramping, blood loss and more.  This is if we’re lucky enough to get to a loo on time……which doesn’t always happen. The bowels cease to work properly and as a result get rid of food from the body as fast as is possible in most cases.  The symptoms are humiliating and embarrassing to put it mildly.    The phrase ‘Never Trust a Fart!’ could not be more appropriate.  Sad, but true! Some people end up with malnutrition because their bodies can’t absorb the nutrients from their food.  Chronic dihoerrhoea is common, as is anaemia from the amount of blood that is sometimes lost.  Ironically this often leads to weight loss, which, from experience makes people think we are healthier.  I lost about a stone and a half in a couple of months at one point and everyone kept commenting on how well I looked.  If only they knew!

This applies to UC as well unfortunately.

This applies to UC as well unfortunately, although the symptoms are slightly different as UC affects the lower bowel.

The really sad thing is that there is no cure.  Literally.  If you’re lucky you can get into remission with medication, many of which have their own unpleasant side effects.  If this isn’t possible Crohns sufferers have to deal with multiple surgeries to remove diseased bowel sections and people with UC end up with colostomy bags which bypass the bowel completely.  IBD and related complications, still claim lives even now, although thankfully this is rarer than it was in previous decades.  It’s nasty.

 

Anyway, enough of the’ Yuck’ stuff, and more of the ‘Yay!’ stuff.  The #GetYourBellyOut campaign celebrates the fight that IBD sufferers go through.  It’s also raising money to go towards finding a cure for IBD.  As I mentioned before, people are often so ashamed of having such a horrid disease and it’s not talked about.  I mean, who wants to admit they crapped themselves in Tesco?  This means that there’s very little awareness of IBD.  This campaign has gone a huge way towards changing that.

imaging.ashx

If you search for the hashtag #GetYourBellyOut on Facebook or Twitter, you will see a multitude of belly photographs: scarred from surgery, unscarred, with colostomy bags, without colostomy bags, tattooed, tanned, big ones, small ones, ones with faces drawn on them (that’s me!), all kinds of bellies with one thing in common, IBD.  Someone has even uploaded a photo of a daschund that suffers with canine colitis.  Fabulous!  People who actively suffer with IBD have joined in, and many others are simply showing their support for friends and family who have it.

More brave bellies!

More brave bellies!

It’s actually very moving.  Society is very body conscious.  Every magazine I see seems to shout about ‘How to get a beach body!’ or the best way to ‘Lose a stone in a fortnight!’ or ‘Get yourself a flat stomach!’ etc etc.  This can make even the most confident amongst us stare sadly at our reflections and sigh a little.  Well, imagine having a colostomy bag or being heavily scarred because your bowels had a hissy fit and wouldn’t work anymore… and being faced with that.  You’d think it might make already physically wounded people, even more emotionally wounded and ashamed of their appearance.  But not necessarily.  Many UC and Crohns survivors are in fact proud of their battle scars and their colostomy bag.  They fought their disease and are still fighting.  The marks on their body are the outward signs of an inward battle, which they are facing proudly and with dignity.

The Get Your Belly Out campaign shows this so clearly.  IBD is usually a hidden disease, kept behind closed toilet doors for the most part. This campaign has changed that, you can actually SEE the people who are usually forced to hide their symptoms because they are so embarrassing and awful.  Please, please, please browse the myriad of photos online and see how many people it has affected, read their brave, determined messages and if you’re anything like me, get a lump in your throat.  You can also donate if you so wish by texting IBDA99 & your donation to 70070 or via Just Giving, the link is HERE.   You could even #GetYourBellyOut, post a pic online and show your support that way, you don’t have to have IBD to take part. I’d love it so much if you did.  This innovative, amazing campaign has raised £1470.00 so far and it all goes towards beating this horrid disease.

Keep in touch with this amazing campaign by liking the GetYourBellyOut Facebook page.  

Heartfelt thanks for reading all of this. It means more to me than you know.

This is my belly, it is happy because it is in remission.  This was done in permanent marker and I can't wash it off. Doh.

This is my belly, it is happy because it is in remission. This was done in permanent marker and I can’t wash it off. Doh.

Tomorrow! Tomorrow! I love ya, Tomorrow!

Tomorrow!  Tomorrow!  

I love ya, Tomorrow!

Well, midears.  Tomorrow I have my open hemorroidectomy, about the most undignified operation you could ever think of.  I mean, it’s not not something you can take seriously really is it (maybe about as seriously as you can take little Annie’s hair do.)  Of all the diseases, complications I could end up with, I get landed with one that has broken my ass.  Typical! *stares sheepishly at feet*

So with this in mind, there may be a bloggy silence for a little while, although I can never stay away for too long.  Maybe a couple of days.  Or I might bob on and spout painkiller induced nonsense about the benefits of sitting on inflatable rubber rings.  I’ll see how I feel.

I can’t wait to heal after this and be back to normal.  If all goes to plan my ulcerative colitis will stay in remission and I’ll be back to my usual self, no more fatigue, pain, embarrassing accidents.  My tigger bounce will return at last. It’s been a long time coming I can tell you.  Two years I’ve been fighting with this beast of an illness.   The surgeon said that I shall make a complete recovery from this operation in 6 – 8 weeks so it’s all just a matter of time.

I know I promised photographs of hats and I also know I have unfinished penguin prizes to send out and some reviews I need to complete, and post I should already have sent out.  This will all be done, it’s just on hold for a little while.  I am a woman of my word, I’m just also a woman with a broken bum….please bear with me while I get better and then I’ll be back on the case with things. Wish me luck.

So……A quick curtsey to the audience.  This is me exiting to the left of the stage. The velvet curtains are closing with a swish.   I’ll be back for an encore very soon. x

 

 

 

Fight or Flight

Fight or Flight.

A quick blog post and a declaration of intent.  I have my date for the ‘Open Haemmaroidectomy’ so my troubles should be over soon.  It’s on the 28th March and it can’t come round soon enough!  Anyone who knows me can vouch for how much I’ve gone through over the last two years with my Ulcerative Colitis and then with this final complication. This is the last hurdle, after this I hope to stay in remission and get back to being Kayish instead of being sluggish, fed up and in painish.

It’s not like it’s Cancer or anything , but this operation is the scariest thing I think I’ve ever faced on a physical level.  The surgeon told me that I’m in for ‘6 – 8 weeks of hell’ and that it is a ‘very unpleasant operation’, but that it’s worth it.  Horace is taking two weeks off work to look after me, one week’s holiday pay and the other one will be compassionate leave so we only have the one week without a wage.

This surgery is the most painful way of dealing with this, as opposed to stapling which isn’t meant to be so bad – but it’s meant to be the most effective.  Since finding out the surgery date yesterday I’ve had the words ‘Terrifying’ ‘Painful’ ‘Traumatising’ ‘Debiliatating’ and other lots of long scary phases running around in my head.  This will get me nowhere.

I’m going to work very hard at ignoring the whole situation.  Worrying will not help.  Must keep busy, not think too much and use language in my head that doesn’t escalate the terror: word combinations such as ‘Worth it,’ ‘Last hurdle’ ‘Light at the end of the tunnel,’ ‘Hopeful,’ and ‘Bring it on!’  There’s a flight or flight thing kicking in here, and I intend to cultivate the fight option.  I’ll kick this stupid disease’s ass and I WILL make a full recovery.

If you think I’m making a fuss over nothing, please feel free to read THIS which is what I’ve been going through on a daily basis.  I cannot wait to be free of this horribleness.  I just have to get through the op and I can have my life back! :O)

Progress!

Progress!

Well, I can finally say my Ulcerative Colitis is in remission!  Woo hoo!  I went for my flexi-sigmoidoscopy the other day and they said there’s no problems in that respect so I’m very, very relieved.  The only problem is that because of what I’ve been through with it all I have what I always thought was an old ladies kind of issue, haemmaroids, and massive ones at that.   I’m not going to blush and be quiet about this because, dammit, I decided a long time ago that I’m not going to be quiet about this stupid disease.  The more people that know about what UC sufferers go through the better.  Awareness is never a bad thing.

So they’re grade 4 nasty inflamed things and I’ve been booked in for an urgent haemmaroidectomy which will go ahead in the next two weeks.  They’re too bad for banding so it’s a full on general anaesthetic operation with a recovery time of 1 – 2 months apparently.  Even the consultant at the flexi-sig said that the op is very painful so I’m actually scared stiff – but it will be worth it.  Once I’ve recovered from the op I’ll be ‘normal’ (well as normal as I ever am) as I’ll not have the UC or broken bum symptoms anymore.  All I can say is Hallelujah! About time too.

After having googled to find out what to expect, it sounds like I won’t be able to do the school run for about 3 weeks minimum and I’ll be living on the sofa and in the bathroom for quite some time.  I like the sound of living on the sofa a lot and intend on watching a ton of natural history programmes and hogging the remote so it’s not all bad.  Horace is going to have to take time off work to look after me and I feel bad about that, but I can’t help it really can I.

I’m rather worried about how the kids will cope with an incapacitated mum, but Darlek is a little love and will probably look after me lots.  Sausage will do his best I’m sure.  It’ll be fine.  I just want to be normal again.  My Tigger bounce and my lust for life disappeared a couple of months ago, so I’m looking forward to getting that back.  It’s going to be difficult, but it could be an awful lot worse.  Many people go through far worse, at least there’s  light at the end of the tunnel as one of my friends said this evening, if you’ll pardon the pun.

I’m going to stock up on any painkillers I can get my mits on and grit my teeth and get on with things. I’m still hoping that one day someone will offer to swap bums with me.  I’d love one that is completely fixed and is about a size 10 preferably.  Any offers?  Oh, and no cellulite, thanks.  I’m not fussy or anything.

How it is.

How it is.

This week is Crohns and Colitis Awareness week, I wrote this as part of my contribution.

I read a post recently about how if you want to write passionately then write about things that mean something to you, about things that challenge you, about things you wouldn’t normally write about because they’re too close to you.  I suppose it basically means write with your heart on your sleeve.  Unfortunately, for me that means writing with my arse on my sleeve.  I’ve not posted much recently because my whole mindset and everything has been taken up with feeling  either in pain, worried sick or sleeping too much because I don’t want to be awake. Ulcerative Colitis is nasty and has kicked me quite hard recently.  Anyway. I will do toy posts and happy posts and pictures of craft things and wierd recipes again soon, I just need to make sure my head is in the right place.

The kids are fine, Darlek performed carols with the choir today at a local church along with kids from a load of other schools.  She smiled all the way through, knew all the words and looked so grown up amongst all the other children.  Sausage sat next to me smelling like a sewer (he had an accident just before we got there) and tried to cover my mouth with his hands because he didn’t want me to sing. I know I don’t have a great singing voice, but I was a teeny bit put out.   It was also a bit distracting when he mimed pulling my ears off mid ‘Oh Come All Ye Faithful.’  That’s the nice bit.

This is the bit that makes me feel a bit wobbly.  Stop here if you don’t want to hear about how I’m coping with things below the surface.

Do you ever feel like it’s all just a bit much? Today for example, my ulcerative colitis is acting up, as it has done for months now.  Sat on the loo, blood drip, drip dripping like a tap just before it starts flowing properly. Sharp stabbing pain where the sun don’t shine. Nuzzling a nearby jumper because it eases the pain somehow. Spend ages waiting for the blood drips to slow down so I can run off and find a camera so I have actual proof of how bad this is so I can show it to my consultant. Bleed all down my legs, find a blood clot on the wall somehow which needs wiping off. Take a photo of a loo that looks like red paint has been poured down it. Listen to the kids downstairs and wonder how much blood you can lose before you become queasy or faint and hope that my 7 year old daughter knows how to dial 999 or what my parent’s phone number is at least. Flush the loo, and then flush it again because it’s still a nice shade of sunset and the kid’s will wonder why the loo is a funny colour. Stand up, make myself look presentable, wipe the blood off the loo seat. Go downstairs. Carry on as normal. Thank god this is only once a day.

Arse!

Arse!

I’m still here hanging around like a bad smell! For those of you who are Twitter addicts you might have noticed I’ve been a little absent recently, only a couple of days I know, but considering how much time I usually spend online it’s a noticeable change of behaviour for me.  Listening to someone winge is never fun and if I can’t say anything positive then it’s best I say nothing at all.  So I’ve saved it for here instead. This is my personal diary as well as my official ‘blog’ and I suppose if I record this now, I’m hoping I’ll look back on it later and think ‘there, I got over that and everything’s better now.’  I hope.

I don’t owe anyone an explanation, and I suppose most people won’t be interested really, but I’ve always felt blogging is therapy as well as fun, so I’m venting just a little today.  Feel free to skip to a more positive post I’ll no doubt post later in the week.

Had a lovely walk in the sunshine today, along the canal bank with the kids running around whacking each other with massive fronds of Rosebay Willowherb.  Sis and her two kids were fabulous company and we chatted about everything and anything and put the world to rights a little.

It was a reasonable sized walk and by the half way point one of my hips was hurting a little which made me limp slightly.  My Ulcerative Colitis means I get arthritis pains as well as tummy pains unfortunately you see. By the time we were within half an hour of getting back to the car both my hips were killing me and when Sausage started badgering me to run around I realised I didn’t want to chase him because it hurt too much.

I love walking and I love the outdoors, fresh air is something I crave and open skies are my solace when all else fails.  I can’t believe this stupid condition is even affecting my ability to walk.  I had a flare up like this before I was diagnosed and I can remember my doctor basically implying that it was all in my head, when I insisted it was all in my hips and my joints.  Idiot.  At least now I know what’s causing this, but it doesn’t make it any easier to deal with.  I don’t drive, I walk everywhere, I have two active children, I just don’t want to have to deal with this.

I’m on a fairly high dose of steroids at the moment and have been on them for approximately half of this last year.  Every time I stop taking them I start bleeding horribly.  Recently I reduced my dose and started with the awful bleeding etc so couldn’t get off the steroids at all and had to go back to a high dose.  So I suppose I’m officially steroid dependent.   I’m also taking an immuno-suppressant drug which doesn’t seem to be working (despite the dose being upped already) so I need another colonsocopy and then most likely they’ll up the dose yet again.   So I have the double whammy of another tube up my arse episode to look forward to, even more meds and if I can’t get off these steroids my weight gain will continue (half a stone in the last two months) and I can look forward to a lovely MoonFace.  Pretty, on a moon – not on me.

I’ve even looked into surgery recently.  I’m on 140 tablets a week ranging from anti-inflammatories, enemas, immuno-suppressants, anti-depressants, calcium supplements, iron supplements (I’m anaemic due to blood loss and not being able to digest my food properly), steroids and I’m sick of living like this.  I feel constantly tired and my joints ache when I’m flaring.  I’m also scared shitless of what’s ahead.  I have the option of a higher dose of immuno- suppressants, and then a couple of other drugs to try – if the local NHS or whatever will fund the last one which is debatable.  I can’t stay on steroids and I can’t continue bleeding like I have been.  I feel very much like if having my colon out is at the end of the road, then I’d rather face it sooner than later, because the thought of all that hell in the meantime is quietly terrifying.

Call me a wimp and a pessimist, but I just feel like the next few years are going to be a constant round of visits to GP’s, consultants, the hospital, the loo and I don’t want this.  This is why I’ve been looking into surgery which basically means the old ‘crapping-in-a-bag’ scenario, putting it very bluntly. But if that meant I’d be well again, then why the hell not. The thing is, from what I’ve read, it’s major surgery and all hell can break loose with that too – so I guess I’ll just have to continue coping with my shitty colon.  So that makes me sad.  I’m not naturally an aggressive person, but it makes me want to punch pillows and smash plates – neither of which I will do because it’s all rather pointless (and expensive, I love my Denby plates).  There is no cowards way out of this.  Bugger.

Tons of people deal with terrible things on a day to day basis and I’m under no illusion as to how minor this is compared to some.  But it still drives me mad, especially when I literally can’t run after my 4 year old on a sunny Wednesday afternoon and play jumping on shadows because my fekking legs hurt due to some stupid misbehaving inflamed tummy.  Please note, if either of my kids or nephews had fallen in the canal, I’d happily (well, not that happily maybe)  have run and jumped in after them, hurty hips or no hurty hips. I’m not incapable, just uncomfortable.

So that’s why I’m rather quiet.  I’m taking stock of where I’m up to and evaluating what’s important at the moment.  I’ll be fine in a week I reckon, by that time I’ll have gathered together a bit more ‘oomph!’ and will be back on form. Promise.

Apart from anything else I’m just writing about this as part of my telling people about Ulcerative Colitis mission – not that anyone will have read past the first paragraph after my introduction, lol!    If you met me on the street you would never know anything was the matter with me you know, it’s a completely invisible disease.  And it’s not Irritable Bowel Syndrome and just a case of watching what I eat and farting too much, which is what so many people seem to think this disease is.  Irritable Bowel Disease, Ulcerative Colitis, is your own immune system attacking itself so badly that it causes ulcers and wounds on your insides that often refuse to heal causing cramps that can rival labour pains, terrible blood loss , loss of bowel control in some cases and countless trips to the loo (when I was admitted to hospital last time I was literally crapping mostly pure blood ten times a day) and had to have intravenous steroids to stop my bowel bursting in a worse case scenario.  It also causes inflammation in your joints such as arthritis.

I can’t just stop eating spicy food or fibre and everything will be fine because food isn’t the cause of this, although it can aggravate it – unfortunately I have no idea if anything I eat causes a flare because I’ve not spotted a pattern as yet. Stress can aggravate it too, although with a busy family life and a chaotic lifestyle there’s not much I can do to control that.  In many ways it’s just a case of my immune system just going bonkers, it’s not something I’m doing that is causing this, it’s in my genetics or something.  It’s a complete pain in the arse, but its my arse and my arse alone – so no-one else can deal with this apart from me, much as I wish I could run away from my own arse and leave someone else to cope with it. Not gonna happen.

‘An Arse! An Arse!  My kingdom for a New Arse!’  (made up Shakespeare quote, Richard III)  

P.P.P.P…. Post a Penguin!!!

P.P.P.P…..Post a Penguin!!!

(and there’s even P.P.P.P……Prizes at the bottom of the P.P.P.P…Page)

One of the unwritten rules of blogging, tweeting and emailing is apparently not to use too many exclamation marks.  Can you believe it!!!????!!!!!

Anyway, fekkit.  This week my colitis has been utterly pants, and although I’m on vast doses of Asacol, Azathioprine, Citalopram (cos this goddam illness makes me miserable), iron tablets and Predisnolone – my condition is again flaring.  So I’ve felt rather downbeat for the last week, and in consequence I’ve felt rather unenthusiastic about  most things, apart from sleeping.  I’m VERY enthusiastic about sleeping.

This has meant I’ve felt unable to write, tweet or generally be ‘Wahey!’ about anything.  Today though, I decided enough was enough, and vowed to get back on the horse (penguin if you prefer) and blog.  So here I am, and I’m going to use a load of !!!!!!!!!’s to make myself sound my usual self.  They always say (whoever ‘they’ are), if you make an effort to ‘be’ a certain way, it can actually make you feel that way.  So I’m !!!!!’ing my way back into positivity!!!!!! *boing*

(I know you can’t ride penguins before you look blankly at me, it just seemed a fitting turn of phrase considering, and beside I’d like to try and ride one of those really big emperor penguins, I reckon they might be big and beefy enough to cope with a sort of piggy back)

I put off the Penguin Amnesty vlog this weekend, because I have at least five penguins belly flopping their way over here, and I didn’t want them to miss out – but this does have to be done, so P-Day is this Saturday, come what may!

I’m well aware that I have committed myself to this, and as I’ve said all along, I’ve got a fabulous fridge freezer from Appliances Online so if it costs me a fair whack to post these penguins on then so be it, I’ve still had a fabulous stroke of luck and feel it is my personal duty via karma to pass that on.  It seems almost wrong to ask for more support considering how massively generous you lovely people have already been, but if you’ve enjoyed the gallery, if you’ve enjoyed reading the terrible jokes on Twitter, if you’ve wanted to donate a penguin but couldn’t find one – please would you consider donating a couple of squid/quid (either will do, the penguins eat squid too) towards posting these delightful, penguins on to some lovely, very poorly kids at PostPals.

Anyone who donates will have their names added to the cards that will be included with the penguins that are posted to these children.  In a nutshell, (penguin egg), I’ll be posting packages that all include the names of the people who donated the penguins and the names of the people who donate towards postage too. And you’ll get a mention on this gorgeous blog of mine too.

Soooo……deep breath.  If you are interested, or if you’ve expressed an interest you can donate HERE: this is PostPal’s charity giving account and it will go towards ridding me of these adorable, but sometimes slightly domineering penguins. (they still won’t get out of the bath!!!!!!!!)

The minimum donation on that site is £5 which I think is maybe a little bit much for some people so if you’d like to donate less than that you can donate via my own PayPal address.  I am not about to go on an exotic holiday to the Antarctic with my newfound Penguin friends, so you can trust me. It’s more than my life’s worth to rip anyone off so you have no need to worry about such things. I intend to blog and hang around for many years to come, so I’m not going to commit penguin fraud with your donations.  ‘Flipper on heart’ that is the truth.

My email address and PayPal address is kay@rubbermonkeys.co.uk.  Go on, spam me to the moon and back you spammers you! (including an email address on a public website is akin to a spammers dream come true apparently)

Anyone who has donated a penguin or a squid or a quid will be put into a draw to win one of these too by the way.

Here’s Josephine the ultra-stylish, hip and trendy penguin modelling the prizes that you could win if you donate to the Penguin Amnesty!

A set of Penguin wine charms!

A Penguin bracelet! This would look beautiful on any flipper!

A hand painted, signed Penguin keyring from the very talented child artist, Dylan Ward (featured by Noel Edmonds)

Many thanks to Dylan Ward and his mum for donating these to the Penguin Amnesty.  Aren’t they gorgeous!

Just make sure you comment on this blog or email me to say when you have donated so that I can keep track of how much you’ve given and who you are, so I can make sure you’re credited for your generosity on here.

I don’t mind if you donate 10p, anything at all is so much appreciated. Nobody is exactly flush these days with business, life, being as it is.  But I do know that everyone has a heart….. and that, if everyone who reads this can who thinks ‘I wish I could help’  could make even a teeny tiny donation, it would make such a difference.  It’s not hard to make a donation online and me and the Post Pals kids would appreciate it so much.  So many of them have a terrible time, if we can help to brighten their dark days, I think that’s something worth doing.

So, what are you waiting for!!!!!!!!!!!!!!!!!!!!!!!!!!???!!!!

(see, excessive punctuation yet again, do I sound ‘boingy’ enough for you yet?  Funnily enough, even just writing this post and using lots of !!!!!’s  has actually made me feel less upset about the state of my health/arse/stomach already)