Over the last few years photographs of young women baring their ostomy bags on beaches across the world have become a regular sight on social media feed, so much so I don’t even notice their bags anymore.
Ever since the first photo appeared on twitter of a “bag on the beach” I’ve been trying to get up the courage to bear my belly to the summer sunshine – but I’ve never quite been brave enough.
But this summer after years of hiding my pasty white belly from the world I finally plucked up the courage to wear a bikini for the first time since my operations.
For years I somehow had the confidence to wear the tiniest little string bikini, you know the ones which are just a little flimsy triangle of material – not even enough to wrap a sandwich in let alone cover your modesty.
In my experience those tiny pieces of cloth are designed to cause as much embarrassment for young women as possible. Firstly they never fit properly and, even if they do, they happily malfunction if you try to do anything other than lie flat on your back sun worshipping all day.
There’s nothing like the horror of being hit by a wave or shooting out of the end of a log flume only to realise you are topless and flashing your boobs to the whole world, all while your top floats around taunting you, looking rather like a black turd bobbing around in the water.
For all those reasons, and due to a lack of confidence, I opted for a much safer alternative for my first outing in a bikini since my operation – the high wasted granny pants and bra top.
Despite my massive pants pretty much covering all but the very top of Winnie, walking out to the pool in Santorini on the first day in my bikini filled me with a sense of dread. I was worried people might stare; perhaps wonder if it was sanitary for me to be in the pool; and what they would think when my belly started to expand.
I hardly notice Winnie in my day-to-day life anymore; I can wear pretty much anything I want and don’t really care if people can see the outline of my bag under my dress or top, but for some bizarre reason the thought of lying by the pool with my bag on display frightened the living daylights out of me.
It was ridiculous to be so worried and insecure, naturally no-one batted an eyelid.
Actually the hotel we were staying in was so small I would have felt comfortable going the whole hog and I wish I’d taken a tiny little string bikini in my bag in case I’d got the guts to go for it by the time we left.
To be honest it was probably for the best that my bag was securely tucked away – the wind was so strong pint glasses went flying, so my ostomy would have been flapping around like a white flag in the wind which wouldn’t have been pleasant for anyone.
Hopefully one day I will feel comfortable enough to strut along a beach with Winnie on display, but I don’t think I’ll be swimming in a tiny string thong any time soon, experience tells me not to risk outfits secured by flimsy knots after a certain age.
I hope if you’re going on holiday in the next few weeks you have the confidence to wear a bikini, if not loads of department stores have some really stunning swimming costumes on sale at the moment, including ones with tummy control and little skirts to hide any telltale signs of your bag.
This is the one I wore two years ago in America, which was great at covering my ostomy so soon after my operation…..it also helped after eating my own weight in burgers!
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!
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?
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?
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?
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?
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.
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.
This week has been all about raising awareness of what IBD is. I hope you’ve learnt something – I certainly have.
What always amazes me about the IBD community is how open, honest and brave the people who suffer from Crohn’s and Colitis are.
Back when I first became ill Crohn’s Disease and Ulcerative Colitis were relatively unknown, they were what Dr Christian Jessen would have described ‘an embarrassing illness’.
Talking about toilets was frowned upon – unless that is you were a lad who could fart really loudly, and then that was, well, your crowning glory.
Social media has it’s downsides (believe me I know) but for Crohn’s and Colitis it has been such a breath of fresh air.
The illness has gone from something people were frightened of talking about, hidden behind the toilet door, to having this massive community on twitter, Facebook, blogs and youtube full of people giving each other support and advice…and hope.
People proudly share their stories of bravery and their remarkable battles to go on to do amazing things, most of which I could only dream of: the ultra marathons; the world record attempts – even just wearing a bikini with a stoma.
The world is unrecognisable from the one in which the teenage me hid in the school toilets, tucking my feet up the side of the cubicle, and trying to be quiet as I tried to curl up in shame.
Now every single day celebrities, politicians and sport stars, and just incredible every day people are sharing their stories in local and national press….it’s remarkable.
It feels like a week doesn’t go by without IBD being in the tabloids, sometimes for weird ‘junk causes Crohn’s’ claims, but mostly for stories which make me want to punch the air and shout ‘you go girlfriend’ – now that would raise an eyebrow in the Welsh Assembly lobby.
Yes I wish people were still more understanding: especially when they tut at me for using the disabled loo – if my can’t wait card works in Italy why do I sometimes need to pretend to be pregnant to skip the toilet queue when my bag is about to explode (sorry my little rant).
I remember as a teen hiding in the loos, trying to hide my frightening illness, wasting away with no idea what was happening to me – I was so weirded out by what was happening I would rather have died than told anyone.
I wonder what it would be like now for me, in a world of being able to google for help and advice.
But there is no point in looking back in that wishful way, I’m just so happy things are on the way up for IBD: yes, there is still no cure, it is still a horrific illness, but awareness and understanding is growing on fundraiser, stoma bag selfie, and bare tummy at a time.
No one with IBD should ever feel alone again – get online, learn to laugh at those horrible moments with others, cry, smile, giggle, grumble and vent, and just support each other.
No one should be defined by an illness – don’t let it rule you, share your experiences and show it you’re the boss.
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.
Seeing red in your ostomy bag is a frightening experience.
Spotting blood where it isn’t meant to be is horrifying for anyone (if you’ve not experienced it I hope you never do), but after 14 years of Ulcerative Colitis seeing red is enough to make my world crumble.
It is the tipping point, the moment I have to stop kidding myself that the agonising pain will vanish (even though i know it never will) and the horrible realisation that I will have to drag myself to hospital.
When I say spotting blood it is more like a massacre – not that I want to frighten any of you.
Anyway that’s beside the point. For the past year I’ve lived without red in my stools – well until I eat something like tomato soup, and then I nearly always forget I’ve eaten it and freak out.
Some foods do weird and wonderful things to my stoma output and turn it bizarre colours which would startle any right minded person and have you running to the doctors whispering “why is my poop bright purple? What exotic disease have I got?”
You probably wouldn’t stop to think you might have eaten beetroot – but there again most people don’t examine their poo for weird qualities like people with IBD have drummed in them to do.
Today I forgot I’d eaten tomato soup, hence I had a little heart jumping moment (like when I see a large spider lurking in the bathroom) when I saw the bright red colour of my stoma bag contents.
As a now slightly seasoned ostomate I’ve taken to taking a little moment to think while I’m sat on the loo – I stop and say ‘Rach what have you eaten that might have caused this…’, before I allow myself to properly freak out that my illness is back or has morphed into Crohn’s disease.
It’s a good job I did – the memory of the tomato soup came flooding back and I visibly relaxed.
morning
gym
dinner
The first time my output went green I went mental…what the hell, what did it mean, I hadn’t even eaten anything green!
Green is pretty normal for me: I adore spinach even if my stoma does not.
But for most green is a sign that what you are eating simply isn’t being absorbed – it means you’re having too much fibre, or your food is going through you. This happens to me a lot, as I insist on eating the foods my digestive system doesn’t like, such as: rocket, spinach, cucumbers – which do from time to time cause me a lot of pain through blockages.
I remember being totally freaked out though the day my output went bright green – I mean pretty much luminous – a consequence of some very horrible cocktails the night before.
Bad colourings in cocktails have also led to slightly purple output, bright red and a slightly blue tint – always a really horrendous experience when you’re hungover and confused enough without thinking your dying.
In other news I went to the gym, got drenched posting letters and almost got lifted off my feet on the way home – thanks lovely Cardiff weather.
I can’t fart. That’s a fact. Well, if you’re going to be picky, I can’t but Winnie can…..and boy does she choose her moments.
If you haven’t met Winnie, let me introduce her. Winnie is not my dog, great-grandmother, embarrassing friend and whoopie cushion or some sort of windy companion. She is my stoma – and we have put up with each or for the past 18 months since I had an operation which pretty much saved my life.
Today is Ostomy Awareness Day, and I wanted to share with you a few home truths about what living daily with an ostomy is really like. Public awareness of ostomy bags is next to none. Until I was faced with surgery I thought that only old people with Zimmer frames had stomas, ostomy and colostomy bags. I was sure that they were massive, ugly, heavy things that people had to carry around on stands and have emptied by nurses and carers – I’m pleased to admit that I was TOTALLY WRONG!
Having an ostomy does not make you any different from anyone else – apart from it probably makes you superhuman (in my humble opinion that is). We still poop, but only a little differently than most people. As far as you know the stunning woman sitting across from you could have a bag, the young lad riding the bike or the weight lifter at the gym. These days bags are so discreet Ostomates (the cool name we like to call our club or colon free folk) you can wear swimming costumes and tight fit party dresses without anyone ever knowing you have one – unless it fills up with air and then it’s a whole different ball game.
Most of the time me and Winnie get on just fine, but there is a whole lot to having a stoma that most people don’t realise. When Winnie decides to have a paddy she really goes for it. She doesn’t like certain foods, hates fizzy pop and rejects various bags at the toss of a hat leaving me with red raw painful skin. But she saved me from an illness which was destroying my life, and, well killing me. I can now travel the world, enjoy life, write for hours on end, and just do things most people take for granted – I used to be chained to a toilet seat and often collapsed in pain.
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1. Sprouts come out whole!!! It’s a bizarre fact that no matter how much I chew some food it seems to reform in my digestive system and come out the way it was cooked in my bag. This happens with peppers, mushrooms, sweetcorn, peas and sprouts, and it hurts a fair bit when it happens, as a stoma is only a small opening for a whole sprout to fit through. Let’s just say it made for a very interesting boxing day!
2. I can’t fart – but Winnie can and she sure chooses her moments. For days Winnie won’t make a sound, but then, when I’m sat in an important meeting, in a quiet court room, on a romantic date with my boyfriend or any other sensitive moment, she will thump away to her heart’s extent. She seems to know the exact moment to speak up, and does it with such eagerness and determination I just have to laugh. I used to try to stop her with my hand, muffle her with clothes, but that just fuels her fire. I have learnt to just smile laugh and tell whoever is nearby that I have a stoma and she is having a bit of fun. I tend to find if you are not awkward about it either is anyone else!
3. I can still wear nice clothes. Yes I have an ostomy but I can still look young, hip and sexy – well as much as I ever did. I have had to change some of my fashion sense, and don’t wear a lot of body con dresses any more, mostly due to confidence! But I am not living my life in baggy t-shirts and walking around looking like I’m wearing a giant black bin bag. I can go swimming, run, jump and hopefully even skydive.
4. It can be fascinating. Having a stoma can be very odd, but also fascinating. I am often in awe of the way she works. She moves and appears to have a life of her own – she is after all a part of my bowel on the outside of my body. I don’t watch her all day, but sometimes, when I’m changing her I like to check everything is ok, that she has no cuts, and often I can’t help but laugh when she chooses that exact moment to start moving around.
5. I have no back passage. Sounds very odd, but after 14 years of agonising Colitis I don’t miss having an ‘arse’. It is now sewn up and totally inaccessible to doctors shoving cameras up it, something I could not be more pleased about! I have no colon, but am surprisingly no lighter than I was when I had it! Weirdly, despite not having a back passage I still, occasionally, get the feeling that I need to push. Obviously nothing happens, but I still find it weird.
I hope none of this has freaked anyone out who is preparing for surgery. The truth is life without a colon is far better than it ever was with one. From time to time I still get pain, and having an ostomy is not without its problems, but I have never been so free. Winnie has giving me my life back. In two days I go to America for the holiday of a lifetime – I couldn’t have done this without her, I would have been chained to a toilet seat.
So happy World Ostomy Day, my stoma is the best thing that has happened to me, and I hope that this day will help to reduce some of the needless stigma attached to ostomy and colostomy bags, and raise some awareness for those who live with them every single day.
I’m really sorry at how rubbish I’ve been recently. Everything seems to be getting on top of me. Work has been hectic, holiday planning has taken hold of every waking moment outside the office, and I have been feeling generally, well, crap.
I haven’t posted any photos of my skin over the past few weeks because it would have made you all violently sick. Three weeks ago my skin was so painful I couldn’t walk – my legs were covered in puss-filled boils. At around the same time my skin blew up so did the skin around my stoma, it became bright red again, like it had been burnt. I also got itchy rashes around my eyes, and my eye condition came back.
All in all I have spent the last few weeks feeling like a scale covered snake, well, a hairy scale covered snake – if that’s at all possible. I’ve been unable to shave anything, unable to exercise and unable to look after myself. I’ve felt sick, unattractive and damn right sorry for myself – and mega stressed with my job and my holiday planning.
I went to the doctors in hope of a cure – what I got was infuriating. The doctor, who is apparently a skin specialist, was gleeful at my pain. He could not have been more pleased that I was in agony. He smiled and laughed and seemed joyful that I had such an ‘unusual’ aliment. He seemed to want it to stay put, so that he could study it and poke at it – it was so insensitive, and is something that has happened far too often in my weird and wonderful years of living with the joys of IBD.
Anyway, I eventually resorted (well was forced by my boyfriend) to go to the out of hours doctors. I have no idea why anyone bothers with their real GP after that. The woman was amazing, and really listened to me, prescribed me antibiotics, and was incredibly sympathetic. I wish I could have her all the time, and, in hindsight I should have found out her name and swapped surgeries!
The antibiotics worked but left me feeling rotten. I threw up constantly, and was even on them during Andy’s birthday party. I felt awful. The weekend after I started them me and Andy headed to Milton Keynes so he could do his Spy Day experience I bought him for his birthday last year. We went down the day before, so we headed even further afield to have a go at one of my Visit England challenges – a list of challenges which feels like a massive effort but has so far had many surprising rewards.
Wicken Fen nature reserve was stunning. It was wild and raw, with never ending stretches of long grass as far as the eye could see. I was far too excited to see a dragonfly, and started peering around, shushing Andy as I tried to spot one of the tiny insects. When I finally spotted one I was overwhelmed. I was like a little child. We must have stood for half an hour watching two MASSIVE dragonflies flit about – I guess I wouldn’t have bothered if I’d have know I would have seen dozens by the end of the day.
it was an amazing day. We saw some beautiful insects, and even a deer, it wasn’t the most sunny day so we didn’t see as many dragonflies as we could have , but that didn’t matter it was still a breathtaking experience, and one I would never have done if I didn’t have this bucket list.
The only problem was that we walked miles and I suddenly got very sick. The antibiotics started to churn stomach acid around and I couldn’t go anywhere. I felt dreadful. Luckily I made it back to the car, but when we got to tea I was violently sick – not pleasant for anyone.
Luckily my skin has started to clear up. Which is fantastic as we are heading to America in a week’s time, and I’m so stressed I can hardly breathe. I couldn’t be more excited for the trip, but there is still so much to sort out both for the holiday and at work. I’m also (this is one for the girls) trying to figure out what to do about my bikini line now I have my stoma – should I brave it and get a wax or try the cream?
And I won’t start about the swimsuit nightmare I’ve been having!
Anyway I will blog again tomorrow about my preparations for the big trip! Hope you are all well.
Do you want to join in with the Visit England Challenges and find out more about Wicken Fen visit http://www.visitengland.org
It’s finally happening. After months of twiddling our thumbs and searching the internet we finally bit the bullet and booked our flights and tickets. I couldn’t be more excited. In just over a month’s time I’m going to be waving a wand, riding a broom and casting spells in a whole world filled with Harry Potter. It is going to be a very expensive dream come true and I am determined to enjoy every single second of it. Yes i will be the one running around in a cape and screaming wingardium leviosa to try and make screaming brats hover in the air!
There’s a long wait ahead before we jet off to the USA, but I’m already starting to think about which and what supplies I need to take for my ostomy. I’ve been on a plane before, so I know all the tricks about getting a doctor’s note about my appliances, dividing them between my hand luggage and my check-in luggage and not drinking fizzy drinks on the plane. You can check out my past blog with my experience flying to Europe last time here. But this time opens up a whole new world of questions. This time I am travelling long haul for the first time with my stoma, so who knows what’s going to happen.
The trip is going to be incredible! We eventually booked with Virgin. It was a tiny bit more pricey but I felt reassured that we would be booking the whole trip as a package, so that in the off chance that something does go wrong we will be covered. It also takes a weight off my mind to know that the flights will be clean, comfortable, there will be free, adequate toilets and we get two items of hand baggage each and cabin baggage included in the cost. They were also great about me taking my ostomy supplies on board the craft – always a niggling worry – and were great with my dietary requirements for the flight.
It’s an epic adventure. We are really pushing the boat out heading to Universal Studios and Islands of Adventure; Wet ‘n’ Wild; Sea World and Aquatica. We didn’t want to do Disney (I’m into that whole kiddy animated stuff but Andy isn’t – well he claims he isn’t!) but I couldn’t go to the USA without going to Harry Potter World. I’m so beyond excited about walking through Diagon Alley it actually scares me. I had no idea I was such a geek! But when you look at what we are going to experience (see the website here) I challenge you not to go giddy and want to fork out your life savings to jump in my suitcase and run around this place in a cape and wizard’s hat too!
We are also spending a few nights at Marco Island, to basically unwind from all the crazy running around and nausea of french fries and roller coasters! Then it’s off to New York city for shows and sights.
I’ve been to the USA before – but that was pre 9/11, so I don’t need to say that I was very young and that an awful lot has changed since then. I went to Orlando, to Disney and Universal twice as a kid, it was magical. But so much has changed, there are all these new theme parks, rides and massive advances in technology – I think I’m going to see it with new eyes. I almost think that as a kid I was so overwhelmed by the magic that I didn’t appreciate the details, I guess I was far too busy chasing adults dressed up as cartoon characters around the parks trying to get autographs to notice some of the details – as an adult I’m sure to notice, and experience things so much differently, Andy has never been, not even to the USA, and I can’t wait to show him everything, from the massive burgers and crab shacks to the amazing theme parks and stunning beaches. It is going to be the best trip ever and I’m starting to try to sort out my supplies so that I don’t get any nasty surprises a few days before we go.
Ok, so there are already a few things that are bothering me. I’m trying to find a bikini that fits. I want a high waisted vintage style one, preferably polka dot, if anyone can point me in the right direction I would be sooooo grateful. I also need a sturdy, yet flattering swimming costume – I’m seriously worried what the impact a day at the water park might have on my ostomy; will I need to change my bag all the time; keep drying it; wear a hernia support; or will it just stay on? (at the moment when I swim I change my bag immediately after I get out to avoid leaks).
Other niggling things include: What’s in butter beer? Is it made of butter? If so that will be a no go unless kids wandering around Hogsmeade want to see a bright green gremlin vomiting and passing out….not a good look! Also, how good is America with lactose intolerance, will there be things for me to eat in the theme parks? Can I eat pretzels? Will there be ice-cream (sorbet) for me to eat? How will my ostomy cope with the weather? Are there a lot of toilets? What happens to my bags while I’m on the rides?
I’ve sorted my travel insurance, which didn’t cost any more than £100 thank God, and also thanks to AllClear. Which is already a massive weight off my mind. But I would love any advice that anyone has about theme parks with an ostomy, swimming outfits that are flattering and youthful and any other tips you have for long haul flights/and/or visiting America with dietary requirements.
Don’t worry, you have a month to get back to me!!!!!
Oh, and I have been nominated for the ice bucket challenge – GREAT – I will share it later!
Right now it’s 1.25am. I’m sat propped up in bed, exhausted, nauseated and feeling groggy as hell. I probably look like I’ve been dragged through a hedge backwards at least 15 times, and would hate it if any firemen or police needed to break into my flat and see me this way. Lets just say thank god my boyfriend isn’t here to see me like this – he would probably fall out of bed in fright of waking up next to the monster from the black lagoon, and, to be honest that swamp creature is probably better groomed than me right now.
I feel like I am slowly going back to square one. Tonight, and last night, feel like the evenings of days gone by. Tonight feels like the weeks following my operation; where I couldn’t lie flat; had to stay perfectly still all night; lived in fear of explosions and leaks; and could feel every tug and pump of my tired and hacked up bowel – oh, and how can we forget, the agonising skin problems.
Most of that was caused by my mucus fistula, which has thankfully now departed, but – if you can bear it – you can read about that nightmare here.
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Ok, so things are nowhere near as bad as they used to be, and I feel pretty weedy for moaning about a few nights of sleep deprivation, for years I survived on potentially two-three hours a night if I was lucky! But having got used to living a slightly average life this is starting to feel like torture.
I used to get so little sleep that my nighttimes were almost as productive as my working day. While my boyfriend slept soundly next to me I would pain my nails, read novels, write blogs, record video blogs, write stories up and go into the other room to wash pots and dust etc. Tonight I have started to do the same. But, as I’m no longer used to this lack of sleep (well I am now, for the first time since I was a teen used to more than four hours, be it broken by toilet breaks, of sleep a night), I’m going to be a waste of space by lunchtime at work tomorrow.
If you’ve been following my pretty feeble attempts at writing my blog while balancing a hectic work schedule and trying to help my boyfriend move into his new house (sob) you will know that I have had a fair few infections (rather unpleasant) ones recently, but apart from that things, health wise anyway, have been finally looking up. But over the past week or so I’ve started to feel run down, exhausted and, to un-sugarcoat things, shit!
My skin tonight!! see what I mean
A lot has got to be said for the fact that I have managed to go without a single day off sick since I returned to work following my operation. Ok, so I don’t get some sort of medal or certificate for that (boo, I totally should!) but I feel pretty proud. But now the signs are starting to show that going at this hell-for-leather might not have been the best thing to do. But, there again, this happens every time I’m starting to get well, so I guess somethings will just never change.
My problem tonight is my skin. It had to happen but my skin has decided to reject my ostomy appliance. You would think this was something that could be easily fixed. WRONG. For most people it is, but I have rejected each and every one that my stoma nurse has tried – this was the only one that didn’t cause a very unsightly and painful rash. Now my body has decided it wants some drama, and decided that it is time to throw a paddy. This is not unusual. My body can’t live without drama, it doesn’t enjoy being well, it likes to be at the centre of attention. And right now it is dancing around in a sparkly spandex suit shouting ay attention to me, look at me, look what happens when you ignore me – and I’m having to sit up and take notice.
I’ve always struggled with my skin, especially around my stoma and other more intimate areas. It has been far, far worse than this in the past. But this time I just can’t handle it. My skin is oozing like crazy, and it looks almost burnt. My bags are struggling to stay on due to how damaged my skin is, and the wound is weeping all over the appliance in a truly revolting manner, which is making me feel smelly and sick.
I feel like I can constantly smell it. I think the smell simply gets in my nostrils and I can’t get it out, meaning I’m constantly paranoid that I’m having a leak, and that other people can smell it – most of the time it is other people farting or drains!
I’ve changed my appliance to a smaller one for tonight, in the hope of drying out some of the skin, but I’m struggling to sleep. I can feel the itching starting to creep in and I’m terrified I’m going to end up like a recovering crack addict wearing mittens on my hands to stop me itching like I had to last summer during the heatwave to stop me getting at my weeping surgical scar. I simply can’t stop going at it; god knows what people during the day think I’m doing – I don’t want them to think I have lice, or worse!!
I can’t leave the bag off for even a second as my stoma seems to wait for the very moment of liberation to go into overdrive. The only time I can get any sort of relief is when I’m in the shower letting the water seep down into the bag and wash the build up away.
So I think the time has come to give in. Tomorrow I will ring my stoma nurse and get an appointment to try and get this sorted. I want to get some sleep and to stop living in fear of my bags simply sliding off, and wanting to walk around with a peg on my nose. Unfortunately, I think me and my Manuka honey bags (which I’ve been literally attached to for about a year) are going to have to finally wave goodbye, that is before I end up in court for indecent exposure, stripping off and jumping into a nearby fountain simply to ease the non stop itch. I don’t fancy that one going in the press!
Firstly I want to apologise for not blogging for so long. Since we last spoke life has been hectic. I have abandoned my normal minimum two blogs a week rule in order to keep up with an escalating workload; to restart my French learning; to get fit; crack on with my novel, and in favour of white wine in the summer sunshine (you have to grab it while it’s here)!
But, as of today I’m back! I’ve missed telling you all about my adventures and sharing my experiences with you all. I’ve also missed hearing your stories and getting tips on how you all cope with Crohn’s or Ulcerative Colitis. Love me or hate me you can be reassured I’m back for good – you can’t get rid of me so easily.
Anyway, today I want to talk about dealing with one of the biggest problems I have living life without a colon. No, it’s not the fact that sprouts, baked beans and spinach magically reform and come out whole no matter how much I grind them to a pulp; the sudden expansions of my bag when it fills with gas; the unexpected (and very loud) farts she likes to make in the middle of meetings; or the fact my poo turns purple when I eat beetroot.
It’s dehydration which causes me the most problems. And it’s not just irritating to have increased watery output, but it can also be dangerous.
Yesterday as I crammed on a boiling tube along with hundreds of other irate commuters to get home from a conference in London, I felt the awful effects of severe dehydration kicking in. The heart was ridiculous and I could feel myself flagging as I stared into a sweaty armpit immediately in front of my face. Stupidly I hadn’t thought to carry a bottle of water and I could feel my energy zapping away with every airless second that passed.
I felt dreadful afterwards. I had all the signs of dehydration. But as per usual it had crept up upon me and I hadn’t realised before it was too late. As I sit in the sunshine writing this blog I’ve still got a headache from it.
Ok, so when it’s this hot (30 degrees, if your not in the UK, is hot for here, believe me) everyone, whether you have IBD, an ostomy, a bald patch, a clicky hip, anyone is greater danger of dehydration. But if you have an ostomy you have to be far more vigilant – as we are already prone to it anyway.
Dehydration can occur after ileostomy surgery as the purpose of the large intestine is to absorb water from the indigestible waste and then expel the waste material from the body through bowel movements.
During ileostomy surgery, a part or all of the large intestines is removed, which prevents the body from absorbing water from the waste before it is excreted from the body. Dehydration can occur when the person does not drink enough fluids to replace the fluids lost as the waste moves through the stoma and into the attached bag.” (Stoma Wise)
Apparently when you have a stoma you should drink one litre above the average recommended consumption of liquid for a person without a bag. And that isn’t when it’s swelteringly hot!
I put my hands up to not looking after myself and being far too busy rushing around chasing stories, working and enjoying myself to remember to drink enough water. I am terrible with it. And having re-started my running and fitness regime, running in the soaring temperatures, I have put myself into the dangerous category without even realising it.
Dehydration can also upset your electrolyte balance (especially potassium and sodium) When the colon (large intestine) is removed, there is a greater risk for electrolyte imbalance, Diarrhoea, excessive perspiration and vomiting can also increase this risk.” (stoma Wise)
So, after a few close dehydration calls and some unpleasant side effects, I have decided to start playing it safe, and hopefully stop dehydration creeping up on me.
Here are some tips I thought I would share with you. If you have any please let me know.
NOTICE THE SIGNS
Dehydration can include: Increased thirst, dry mouth, dry skin, decreased urine output, fatigue, shortness of breath, stomach cramps.
Sodium Loss can include: Loss of appetite, drowsiness and leg cramping may
Potassium Loss can include: Fatigue, muscle weakness, shortness of breath, decreased sensation in arms and legs, and a gassy bloated feeling
STAY HYDRATED – even a lolly will help (for me anyway)
I’ve found that buying a filtered sports bottle has really helped. I currently have the Brita filter bottle which I carry around. I put it in the fridge overnight so that the water is cold all day at work. Eating very soft fruit like nectarines has also helped give me fluid, however be wary some fruit can cause problems for ostomies as the skin doesn’t digest. Popsicles are also a good call.
AVOID EXCESSIVE ALCOHOL
Sun + alcohol = carnage (enough said).
ADD SALT
The only thing I have salt on as a rule is chips meaning I am very salt deficient. I have started adding a small amount to my meals (when it still tastes ok) to try and combat my ‘salt leaching’ situation.
TRY NOT TO GET CARRIED AWAY
For all sorts of reasons this is common sense for everyone, but it is easy to get caught up with the ‘beer garden’, drinks after work, and lapping up the sun mentality. I am guilty of it as I write this. But try to be sensible. Dehydration is a creeping feeling – you won’t know it has happened until you start feeling ill.
A blog about living life with an Ostomy. How life goes on and how wonderful things can be achieved. It is also the perspective of a 30 something woman and life in general!
The big stoma bucket list 