It’s not all about poo – five things about stomas and IBD this #WorldIBDDay


Last year over 21,000 colostomy bags were prescribed across Wales.

Take a second to think about that….21,000.

Now, that’s a lot of people who’ve had major bowel surgery in a small nation.

According to Google (the source of all things) 3.063 million people live in Wales, so no matter how you look at it there are a lot of people living here who are getting on with life with a stoma.

I have boxes of appliances (a posh word for bags) in my little flat – and so many lotions and potions for my stoma I have a dedicated bookcase thing for them all – I simply can’t picture what 21,000 bags looks like.

Yes, it cost £4,189,877.07 , but as someone with a permanent stoma I can’t live without my bag…..I’m not sure the same can be said for the £5,105,411 spent dispensing paracetamol in the last 365 days.

Today is World IBD Day, and in the spirit of awareness raising I thought I would take a few minutes to destroy some myths about living with IBD and a stoma is like, by answering a few of those enjoying questions I tend to get thrown my way which really really really wind me up!

I’m not going to try and explain to you exactly what Inflammatory Bowel Disease is, as Crohn’s and Colitis UK do a much better job at it…see photo below.

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Since I was diagnosed with Ulcerative Colitis, well YONKS ago, awareness of IBD has gone through the roof.

But some of the things people say to me – even friends – show that there is still a lot of stigma and confusion out there…..and at times a lot of blame is laid at sufferers doors.

So here are my top FIVE myth busters – basically all the things people say to me or have been dying to ask me for years, and have the bubbled over and burst out in a moment of total honesty after a few drinks….

Well, you don’t look sick?

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Why thank you very much, that’s very nice of you to say……..

Argh! This is one of those statements which has followed me around my whole life….and it is a massive lie as I often looked horrendously sick.

Not all illnesses show, FACT, and not all disabilities mean being in a wheelchair, FACT. Some chronic conditions are invisible – but that doesn’t mean we are making it up.

Unless I wore a badge or had a sign over my head you wouldn’t know I had ulcerative colitis, and unless I wear a bikini (or you are lucky/unlucky enough to see me naked) you wouldn’t know I had an ostomy.

It’s always really upset me when people think I am making my illness up. Why the hell would I? Who would pretend to have Ulcerative Colitis: It’s not exactly glamorous.

It’s humiliating being questioned and getting dirty looks when you use a disabled bathroom, being stopped at airport security to have your ostomy bag checked for drugs, or running around like a maniac looking for a toilet before you have an accident.

I’ve spent a lot of my life in an awful lot of pain, in hospital, and then recovering. I spent most of my teenage years living a daily battle, and I’ve got the scars to show for it.

But I shouldn’t have to life my t-shirt to show them to you for you to believe me…..my illness is not Santa.

Didn’t you cause your Ulcerative Colitis through eating junk?

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Give me a break! No, absolutely, and unequivocally I did not.

Who the bloody hell knows what causes Ulcerative Colitis and Crohn’s Disease….but I can tell you one thing, me eating some sweets 100% didn’t make me ill.

I once appeared on the telly to chat about UC and was asked about this….my reaction was not good.

I was brought up on a healthy diet of home-cooked food, no take aways, in a house hold of non-smokers. I was too young to drink, and I was a studious school girl who ran for her cross-country team and played in a local brass band.

Even if i’d stuffed my face with rubbish and drank etc I wouldn’t deserve this….no one would.

At the end of the day, I will be the first to admit that my diet since I’ve been an adult has been far from perfect. I probably drink too much wine, and eat too many sweets (I have cut down massively), but I mostly live off spinach, fish and pasta.

But at the end of the day, I’m not injecting heroin into my eyeballs am I?

Can you plug up your stoma? Do you have to open a valve to poop?

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This may sound silly, but I’ve been asked these things.

The answer to both is NO. The first one is dangerous, the second is just a bit confusing.

I still poo, but just in a different way. While others poo though their bum (put in a crude way) I poo in a bag….It may sound gross, but it’s not dirty or unhygienic. Well, no more so then the normal way, and probably better as I can see what I’m doing.

The bag isn’t changed every time I go to the loo, it opens at the bottom and is emptied…simple.

And it never stops, I can’t switch it off. Which is why I’m still sometimes caught off guard and have to run like mad to find the nearest loo.

Why are you drinking WINE and eating sweets if you are so ill?

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Well deserved glass of wine

Well why not? And to be honest after my operation I’ve never been so well, and can do the majority of things, well, within reason.

I do get a little bit angry when people try to make out that I shouldn’t be eating something – while stuffing their own face with crisps, cake, chips and chocolate. Just let me get on with it, I don’t tell you what to eat.

I’m lactose intolerant – so i don’t eat cheese, cake, chocolate, and a whole array of yummy things unless I get my hands on dairy free ones – I also don’t eat spicy food, and rarely eat fast food.

I mostly live off spinach, eggs, potatoes, pasta and loads of salad….which my stoma doesn’t really enjoy but I eat anyway.

Also, it’s a fact that sweets help me and marshmallows and jelly babies are actually listed as medication for when I have bad output days with my stoma. Yes, I often stuff my face with them despite that – but I go to the gym at least four times a week and I walk everywhere.

The fact is that you only have one life. For years I had to analyse every little thing I ate, and had people constantly watching me. I still do to an extent, and it drives me mad as I am a fitness fanatic, and I often have people who don’t look after themselves at all having a go at me…

Are you anorexic, why aren’t you eating anything?

Like many women I focus a little bit too much on my weight. I’ve previously spoken about my feelings about it and the problems of my ever shifting size while living with IBD.

The picture of me above was when I was painfully thin after my first op.

But I’m not anorexic, and it hurts when people say things about my weight, comment on my eating habits, or asked me why I wasn’t eating when I was scared of putting things into my body because I was in so much pain.

You can read the full post here.

A battle of skin and bones: the ever changing size of IBD #7daysofIBD

IBD, it’s just a toilet issue isn’t it?

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No, while one of the symptoms can be going to the toilet a lot, it can be the other symptoms which can be the most crippling.

The illness goes way beyond the toilet stall, and everyone who has IBD tends to be different.

My case before my surgery was extreame, with severe blood loss, non stop toilet visits, horrendous pain, crippling fatigue, weight loss, and even at one point my hair started coming out.

I also now have bad joint pain, and osteophrosis from years of steriod treatment.

Anyway, enough with this depressing stuff…Happy World IBD Day

To end this I want to say, IBD makes me different on the inside from most people as I have an illness which makes my body do horrible and painful things.

I also don’t have a large bowel and my bum is sewn up.

But I am a normal person, who can do pretty much everything everyone else can. I just need some medication and a bit of TLC to help me stay healthy, and to look after my stoma.

Happy World IBD day. Let’s keep sharing awareness together.

 

 

 

 

 

 

 

 

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


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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

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

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

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

 

 

Day 5: A battle of skin and bones: the ever changing size of IBD #7daysofIBD


I’ve always had an ongoing battle with my weight, let’s put that on record.

I have bad body confidence issues, and I rarely realise quite how tiny I am until I see pictures – basically I simply don’t see what other people see when they look at me.

I’m currently the happiest I have ever been with my weight. My training at the gym and healthy-ish eating regime has allowed me to get into the right-side-of-normal weight bracket for the first time since before my illness began.

But even now that I’m happy and well I still think people judge me.

I know when people look at me they think I’m too thin, skinny, anorexic even, but this is me – I am tiny, and it’s my body after all.

There is always so much said in the media about tiny people: we get a lot of bad press, and I guess I’m a bit of a hypocrite because when I look at thin girls I also jump to the same conclusions as everyone else.

But the fact of the matter is, while being skin and bone isn’t a good look, some people are just thin – either because we are built that way, or we have an illness you can’t see.

I have Ulcerative Colitis, and when I was model-skinny it was because my bowel and anything I put in my mouth was literally falling out into the toilet – I was tiny because I was chronically ill, in agonising pain and feeling like I was going to die.

I 100% did not appreciate someone coming up to me and saying, “that girl needs a good feed” or, even worse, “I wish I was as thin as you” – you really don’t, believe me!

I also didn’t appreciate people watching me eat ( know some did it out of concern) – or even worst commenting on how many times I went to the loo which was a major part of my condition.

I guess what’s always made all this worse is when the cake is passed round I can’t eat it – I might be lactose intolerant but the fact I turn it down seems to shout that I have an eating disorder.

Either way there is an assumption made (even by me shamefully) that we choose to be this size – and the looks and comments always hit you right where it hurts.

Over the years my body shape has morphed, with it being unrecognisable from year to year either through severe illness or healing drugs.

Looking back at pictures I hardly recognise the person at times…the moon faced girl, with a giant lollypop head (from steroids) balancing on a skeletal body; the bloated frame of a fresher enjoying booze at uni; and the painfully thin, stripped to her ribs teenager covered in bruises and wires.

I now know how terrifying it must have been for my family to see their daughter wasting away, especially in the months before they diagnosed me.

I’ve been so thin it has actually hurt.

Have you had that? 

It’s not just not a good look, it is actually painful to be that tiny. I’m talking about when your own ribs and spine stick out so much they cause you pain – when you can’t lie down because you’re so bony.

Yes, I’m not going to lie, I’m obsessed with my body. 110% obsessed with having a good, fit, healthy, and well, decent sized body, I love the gym and I eat well – but I will not weigh myself.

That’s because I am actually obsessed with my weight. 

After years of being forced to monitor it non-stop to check every ounce and kg vanishing from me down the toilet, it’s become ingrained in me to the point of an almost obsession, a bit like checking my poo.

So I only weigh myself when I have to (like when I am in hospital). And I now check my body through how comfortable I feel in my own skin, and that pair of jeans – it has got to a stage where I can say that I am frightened of loosing weight, and want to stay as I am.

Yes,  90% of all of my body image issues, battle with weight, and my constant collar bone is due to my battle with IBD – it can strip me of 2 stone in just a few weeks, it is frightening how fast I waste away.

But I will put this on the record, probably 10% of how tiny I am is down to the fact that I grew up thinking being thin was the way forward (due to magazines and pop stars) and even now, as an adult, adverts and movies tell me I need to be slender to be hot.

If it was up to me I would be more curvy, more athletic, and a bit more womanly – but I will never be that shape, my body simply isn’t made that way, so i work hard to look after what I’ve got.

I have my imperfections, and being small has taken it’s toll on my body and battered it over the years. I have Ulcerative Colitis, I have a stoma, and I have skin conditions and well have had osteoporosis since i was 24.

But for now I am healthy, and I am happy with how I am – even if I do struggle to get jeans to fit, and get endlessly frustrated by the lack of my size in the shops.

I would just love it if people would have thought over the years, when I was struggling to walk, vomiting and running back and forth to the loo, to think it might be insensitive before telling me to fatten up; calling me anorexic; or saying “i wish i was that thin”.

I was living on the edge of hospitalisation and in chronic pain – if my daughter is ever that thin I will be panicking – so no you don’t wish you were that thin!

Just a thought!

 

Day 4: Working with crohn’s and colitis #7days0fIBD


Why are people with IBD drawn to stressful jobs?

It’s true, in all my years in and out of hospital I don’t think I’ve ever come across anyone who has a chronic condition (and is in work) who has a job which doesn’t go hand in hand with massive amounts of stress.

I’m a political reporter – enough said.

While everyone who has Crohn’s or Colitis has different triggers for their illness, the most common exasperator seems to be stress, but we seem to be drawn to jobs that have the highest levels of pressure possible.

I have always found I’m in a catch 22 when it comes to working with my illness: I’m a total work-a-holic and I both thrive under pressure and crumble.

Over the years I’ve pushed myself to the limit when it comes to my job, it’s almost been like I’ve been trying to make up for the fact that I’ve been so ill – like I think I’ve got something to prove.

I’ve filed copy from hospital beds and taken my work to the toilet when things have got bad – and I’ve worked all night when the pain has made it impossible to sleep.

The fatigue is crippling and that’s what hits you the most.

But I’ve had my days where work has been impossible, and I now realise that my point proving was hugely detrimental to both my health, probably making me iller than ever, and ultimatly my sanity.

Now as someone who is pretty much well all the time (thanks to my operation) I look back on how I was with horror.

Working around the clock was my way of trying to block out my illness, it was in a way a distraction. But in reality every day I worked until 1am, or stayed up reading reports all night pushed me closer towards the surgeons knife.

It is easy to look back and think I was stupid, but at the end of the day I also have to admit that I love being a journalist, and that’s not an easy job to do when you’re rushing to the loo all the time and in crohnic pain.

I have the upmost respect and admiration for anyone who can hold down a job while living in chronic pain – and I also get why people can’t work.

I was only ever off sick when I simply couldn’t move: when things got really bad my editor sent me home for falling asleep at my desk.

Sometimes I wish I’d slowed down a bit and realised it was ok to ring up work, give in and have a sick day – but I guess I was too stubborn for that.

Day 3: A magical 28th birthday #7daysofIBD #7daysofstoma


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I made it to the grand old age of 28 – it feels like an achievement.

I was after all a premature baby, who was born fighting.

Teamed with my Ulcerative Colitis it has taken a giant team of very dedicated people and a fantastic amount of love and patience from my family to get me this far.

I hope I’m not wasting the gift I’ve been given.

Yesterday was my birthday and I had the day off, accompanied by a stinking hangover. But despite the big headache I had a truly lovely day, deliriously pain free and felt very happy and loved indeed.

My birthdays are always a quiet affair. I like the simple things: a good meal, some wine, a lie in, and no chores all day.

Oh and fab gifts, loads of best wishes messages and some unexpected cards too.

I also ate the thing I try to avoid, as it blows me up like a whale – bread.

Chris spoilt me with some really gorgeous flowers, and we spent the day freezing and feeling sick from stuffing our faces with sweets wandering around the Christmas market stalls in Cardiff, with me getting soaked as someone wasn’t too great at holding a brolly.

I even found a vegan Welsh cake – which might not have helped with my twitchy tummy today.

It was all polished off with my favourite – not Winnie’s favourite – meal at Bills’, spinach, bacon and avocado salad and sweet potato fries….mmmm.

Here’s to many more healthy, happy and pain free birthdays for decades to come.

Day 2: Free wine that’s all I have to say on the matter #7daysofIBD #7daysofstoma


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Me at the office

I’ll keep this short, mostly because I’ve got a stinking hangover.

It’s day three, but I’m writing about day 2 of my blog a day for IBD awareness week, and I’m a year older.

All I can say is that I can’t handle a free bar – that’s not really to do with my IBD, more that I am simply not good with wine.

I’ve known that I’m a lightweight for years, but not drinking and journalism don’t go hand in hand, oh and I do love a good glass of cold white wine.

I want to put one thing on the record: just because I have Ulcerative Colitis it doesn’t mean I can’t have a good time.

I’m allowed to drink, eat the occasional bag of chips and let my hair down – I just have to be a little bit more careful than the average joe as I can get into sticky situations a lot more quickly.

To be honest with you that’s not really down to my illness, it’s more that I’m tiny weeny and often forget I can’t drink a lot of wine despite my best efforts.

It was one of my editors that once told me: “Rach you eat like a tiny little bird – you should drink like one too”.

I ignored those words of wisdom – sometimes they come back to me and echo in my brain in a Yoda like way when I’m getting in my third large glass.

At times when I am ill I often cut out drinking all together. I can and have stopped drinking for months on end. Stopping the booze does help a fair amount, and it is nice to go weeks without waking up once with a head like cotton wool.

But we live and we learn.

Winnie is not a fan of cheap wine, she goes green and sickly looking, and often has a right paddy. To be honest the only time she ever chooses to leak is when I’m hungover and it is literally the last thing I want to deal with.

Anyway, today I’m 28, and I have woken up feeling it.

 

Beating the January blues #dryjanuary after over indulging in Bruges


IMG_7145It’s official, I’ve made it through the first week of January without drinking and not had a nervous breakdown. Ok, so that makes me sound like an alcoholic, but team that with giving up sweets, Dr Pepper and Diet Coke (basically brown drinks) I’m surprised I’ve not killed someone!

In the run up to Christmas I really indulged. Naturally I stuffed myself with turkey, pigs in their fatty blankets and other yummy thigh boosting treats on the big day itself, but it was the drinking and general pigging out in the run up and post hangover indulgence post-Christmas that really did the damage to my health.

For my birthday my lovely partner surpassed himself with a romantic and totally surprise trip to Bruges. It was stunningly beautiful, and, after weeks of working around the clock and feeling unfestive, just what I needed to get me in the proper spirit. But while exploring the windy streets and pretty chocolate box houses and shops, I confess I may have tried a few too many beers, chocolates and well, lets just say anything I could eat I damn well put in my mouth – it would have been rude not to right?

If you’ve not been to Bruges, a few tips:

1) Go on the brewery tour – it’s really cheap and you get a massive beer, the guide is also incredibly knowledgeable and very entertaining!

2) Go to the proper bars, not the ones in the square, which are touristy and over priced

3) Visit the windmills

4) If there before Christmas, go to the ice sculpture festival – almost froze off my hands but well worth it

5) Don’t drink the wine, they have no idea about wine (the only wine bar we found only seemed to know white or red), stick to beer and spirits

6) The best chocolate shop is tucked behind the square – it’s tiny, I wish I could remember the name, but it is great and they select the chocolates for you – even Rick Stein gives it his seal of approval

7) Go to Lizzie’s Waffles – amazing ROSE hot chocolate (even does soya milk) – I was surprised how many places did soya – and Andy had a shockingly large waffle

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Luckily as a lactose intolerant person (meaning I’m the one in the office who always refuses the home-baked treats) I didn’t manage to put on too much weight. Being lactose intolerant in the capital of chocolate is not the best feeling, but did stop me from eating the front of every building in a manner similar to Hansel and Gretel. But I did manage to push my ostomy to the point of meltdown by drinking beer. Apparently, as someone who NEVER drinks beer and pulls that funny, repulsed face, looking like I’ve eaten very sour grapes every single time I’m forced to try it, my body HATES beer. I did like the fruit beer, but even that, despite tasting yummy and like cherries, is too much like beer for my ostomy and body as a whole to cope with. That teamed with numerous sausages from the German market, stews and mussels, made for a particularly revolting sight and smell every morning in the toilet bowl.

While in Bruges my ostomy went into meltdown. It basically hated me. But as per usual I was determined to enjoy myself, didn’t listen and carried on stuffing my face – when in Rome (well Brussels) and all that!

Anyway we had a lovely time, but just like when I came back from Germany my appetite is still ridiculous. I’m constantly craving meat and bread, and for someone who normally lives off spinach, rocket, avocado, porridge and fish (ok and sweets) this is a nightmare. I’ve carried on drinking and eating at a ridiculous pace, and I basically need to stop as I feel ill all the time – all out of my own doing!

So it’s 2015 and I’ve vowed for the whole of January to abstain from the dreaded booze. I’ve also cut out Diet Coke and Dr Pepper (basically all the fizzy pop I like) and the dreaded sweets. It’s only 30 days – it should be easy – during my life I’ve given up food for months on end and lived off disgusting shakes (Ensure) to give my bowel a rest, and I’ve given up alcohol for months on end in a bid to sort out my illness and to recover from surgery. But January is always hard, everyone seems to be beating themselves up at the moment, it’s hard to get out of bed, dark all the time, and everywhere looks empty without all the decorations – not to mention everyone is broke.

I’m proud that I’ve made it to day eight without being tempted. Last night we went to the cinema and I didn’t touch any pop despite Andy having a bottle of Coke next to me. I’m starting to feel better for it, something which didn’t happen straight away as I’ve had a number of unshakable viruses. I’ve got more energy and I’m sleeping better.

I even managed to force myself to go for a run today, something which I have a love hate relationship with. I love running but hate the first minute!

My other new years resolutions are:

To run a half marathon – aiming for one in around March, April time.

Run at least twice a week

Write this blog more regularly

Be more organised – especially with appointments

Get back in touch with old friends and be better at keeping in touch

Finally do that bloody reading challenge

Learn French properly

Get a new job

And, obviously, do as many challenges as I can and as much as I can to raise awareness of Crohn’s and Colitis and Stomas – if anyone has any ideas let me know!

I have a good feeling about 2015!