Braving a bikini after ostomy operations – what was I so worried about?

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! 

Campaign for better hospital food in Wales begins – join the fight

Today my official campaign to stop the slop finally got off the ground.

As you all know I’ve been banging on and on and on about NHS food for years – until a few weeks ago, starved and delirious, I finally snapped.

My mission is simple but will need a lot of support.

I want the Welsh Government to look at the food the Welsh NHS feed their patients, investigate and see if it is up to scratch.

Then I want them to give staff the right support and facilities to feed people (including tailoring meals for people with certain conditons and allergies) what they need to help them get better – instead of banging their heads against a brick wall and taking away full plates of food.

I know I will come under fire over this campaign – I am brutally honest about my negative experiences – but if it sparks improvements people can hurl rubbish my way and I will happily duck.

This is not about undermining the hard work of the amazing doctors, nurses and catering staff in the NHS.

I admire them greatly; they’ve saved my life; held my hand; stayed with me when I am frightened and gone above and beyond their jobs to keep me alive and strong over my many years of chronic illness.

They brought me back to life as a baby, and also gave me back my life from the grip of Ulcerative Colitis after so many years – for all of this I will never ever be able to repay them.

I am literally in awe of the NHS and the staff that work for them – but that doesn’t mean I don’t want to see improvements.

This campaign I hope will help them to do their jobs more easily and without having to endlessly deal with hungry, angry patients, who are not getting better because they are not eating properly.

My petition has appeared on the Welsh Assembly website and I need you all to sign it (if you want to of course).

Ludicrously I only need to get 10 signatures for it to be considered by the committee – which could mean I could ask get 10 people to agree AMs personally have to give free lollipops to donkeys (and if it is devolved) they would have to talk about it.

Please help me with my campaign, hopefully it can make just a little bit of difference for the greater good. I will not stop banging on about this until something is done – and I know you all would like me to shut up!

Petition: Food in Welsh hospitals

In the meantime please share your experiences, pictures of your Welsh hospital food, and anything which might help to build up evidence in this campaign.

Please send to @thestomabaglady or visit my facebook page to share your story.

 

 

 

 

 

Ostomy on the run – and a wealth of injuries on the way #cardiff10k

 

In just a few hours I will be running the Cardiff 10k.

While my fitness has shot through the roof since I moved to Wales, having become obsessed with weights at the gym, I’m getting the feeling I’m going to be hobbling over the finish line.

Over the past three weeks I’ve been blighted with twinges in my abdomen, and earlier last week (horrifyingly) I had a few hours where I couldn’t seem to sit down without feeling stabs of pain.

Ironically for all the ridiculous weighted sit ups I’ve been putting my body through it was a run that caused it (well I think it was).

It all started after a 14k run – the longest on my own – where I felt 100% fine and got an amazing time (well for me anyway) making me feel all so proud.

Well, until I was suddenly in agony!

Shortly after I arrived home I started getting stabbing pains in my pelvis or lower abdomen, for days after it felt like pressure was building up in my abdomen and pelvis….all very uncomfortable and very, very odd.

So I signed up for the Cardiff Half Marathon – and then thought that wasn’t enough let’s do the Cardiff 10K too.

Horrific mistake.

My body has tried everything to collapse under me since I took up this new challenge, it seems to want to try and throw my training out of the window.

But right now I seem to be ok (famous last words)….

Thankfully, following some antibiotics, the pains seem to have subsided and I am back in action.

This week I managed to knock 25 seconds off my best 10k, and I’m on track to do the 10k tomorrow in under 59 minutes – if nothing goes wrong of course.

https://connect.garmin.com/activity/embed/887013082

I’ve always had a love hate relationship with running.

I have days where I’m in the zone, motivated and nothing can stop me on my mission towards my half marathon goal, on other days my legs feel like jelly, my stomach twinges around my stoma, and everything from ducklings, my mobile phone, hair, and the thought of a glass of wine tempts me to stop sooner than I should.

I often think I look pretty hot while running, with my bright pink kit, but I think the couples dining in the Bay would say I look frankly gross (I often do my sprint finish right in front of people enjoying romantic meals, sorry!)

To say I’m not a sexy runner would be an understatement. I often totally forget people can see me: I mouth random words to songs, sweat profusely, get hair in my mouth, and well seem to always get a fly in my eye.

But there again if you look good you can’t be doing it property, right?

Anyway tomorrow will be my second ‘race’ since my ileostomy operation. A few months ago I did the back to the stadium 10k which finished in the Olympic Stadium.

It was an unbelieveable experience, but backbreakingly hot. I finished the race in 1hr 1min and something, which was gutting as I had been doing 10k in under an hour.

Anyway tomorrow’s race – which I’ve combined with the half to raise cash for Crohn’s and Colitis UK – will kick start my real training in the run up to the half.

I’m determined to get a good time next month, the last time I ran a half marathon was the Great North Run at the height of a Colitis flare. I was so tiny, exhausted, and my training had been sporadic due to illness and hospitalisation.

I only managed to stumble round due to the support of kind strangers who were also running for Crohn’s and Colitis and ran alongside me, pushing me on, encouraging me and sharing their loved ones’ stories.

This time I am the fittest I’ve ever been, happy and motivated, and I’m getting a little bit addicted to smashing personal bests.

I want (have) to prove what I can do without this illness. I want to show my own body that anything is possible and that with my ostomy I can make it all the way round the course without going to the loo – a miracle.

Meanwhile my sister (who is a self confessed non runner) will be taking on the GNR to raise money for Crohn’s and Colitis UK. I’m beyond proud of her, and hope she gets round in one piece and with a big smile on her face.

Anyway, good luck to everyone running the GNR or Cardiff 10k, especially if you’re doing it for Crohn’s or any Ostomy charities….I’ll be rooting for you!

If you want to follow my training I will be putting a new section on my blog for you to follow my progress, and as per usual if anyone has any tips on exercising/ running with an ostomy please share.

And, just in case you are feeling generous, here is my Justgiving page.

https://www.justgiving.com/Rachel-Flint

 

 

 

Why am I waiting for my Ulcerative Colitis to return? It’s not even possible….

I can’t remember the last time I laughed hysterically at something.

You know that feeling where you feel like your going to wet yourself, or worse poop!

Earlier today I actually laughed out loud, and as the sound reached my ears I almost jumped out of my seat thinking someone else was in the room – that’s how alien a sound it was.

I guess I’ve been feeling pretty low recently and I’ve been giving myself a really hard time about it.

It’s been over a year since my final operation (hopefully ever) to remove the last evil part of my ravaged bowel and strip that horrific disease from me. I’m not going to pretend everything is perfect, but I have never been better, and that horrific disease has been sewn out of me for over a year!

So it’s hard for me to understand why I feel so low and tired, surely I should be shouting from the rooftops?

When you first get well after a long illness it’s the strangest feeling. For years I lived with a disease that would hide behind a hedge and pounce at the worst possible moment, draining the life from me and taking until I just didn’t have anything left. Sometimes it would leave me alone for a few months but it was always waiting until life started to feel just about perfect before flaring up in my face and messing everything up again.

I guess I’m waiting for that moment, I guess I’m expecting it to come back.

Of course, that would be physically impossible – I don’t have a bowel any more to be ravaged!

But I’m not my positive self at the moment, I just don’t feel quite right, and I’m not having the adventures I sat in that hospital bed dreaming I would be having once I was well and living my life to the full. Instead I’m being a bit of a boring old arse!

That’s why I’ve not been blogging. I suppose I feel a bit of a fraud.

But tonight I was watching a film which made me really think about what matters in life.

In the past few months I’ve left everything behind for a new job in a city where I know absolutely no one, and, if I’m honest, I’m finding it pretty tough.

But watching that tonight reminded me of why I started this blog. It was a bucket load of selfishness – a way of me unloading my feelings on the world – teemed with a genuine desire to help others not to feel alone if they faced the same journey.

This blog was always meant to be about hope, adventure and above all else honesty.

I think I might have forgotten that a bit on the way, and I want to say I am truly sorry for that.

I’m not in any way comparing myself to the amazing woman in the C-Word, a film that left me covered in mascara and clinging to my teddy overcome with emotion at her strength and bravery.

But she reminded me that no matter what you have to carry on, look life in the face and say “you will not stop me” – her story made me feel hope, and gave me a little bit of a slap around the face and a kick up my sewn up bum to sort myself out.

Reading some of your comments tonight made me think that this blog is something that matters, and not something I can just ignore until I think I’ve got something amusing to write – I mean we could be waiting years!

And so I’m going to start blogging again, and, of course, trying to crack on with some of these adventures.

I’ve missed you all so much. I can’t wait to start this journey again….

Big stoma bucket list – one year gone with a flush

A year ago today I was sitting at my computer writing my first ever blog post for this crazy bucket list. A mere few weeks had passed since my first operation, I was still reeling from the shock of having most of my colon ripped from my body and I was a tiny weenie little thing, weighing in at just 6 st 2 lbs. It was boiling hot outside, I was exhausted hunched over my laptop but determined to tell the world about my condition and new life with a stoma. I was sure that no one would read it and I would be talking solely to myself, but I was not going to hide away, I was going to share my story whether the public wanted to know about it or not.

So on May 29 2013 I started Adventures of the Bag Lady, drawing up a list of 101 crazy challenges as part of a bucket list (of sorts) to fully embrace my life with a stoma. As I wrote the challenges down, attempting to get my head around the WordPress templates and world of HTML code, I had no idea what I was letting myself in for: that my life was about to be turned completely upside down; that my world would never be the same; that I would visit more places in a year than in the past five years; and that I would decide to have my stoma made permanent less than a year later.

Enjoying a sunny day

OUCH

The Crohn’s Walk

Just after second op

Too happy here

I had no idea but this silly little list of ‘things to do before I’m 30’ was about to change my life forever. Those first few words on my computer screen would allow me to step out of the stall and out into the world as a loud and proud ostomate, help other IBD patients and catapult my stoma to national fame!

Before my operation I had lived in constant fear of life with a stoma. I was sure it would wreck my love life, confidence and condemn me to a life wearing tracksuits and baggy t-shirts. I was sure the shame of people finding out about my ostomy bag would kill me. I was terrified of what people would think; of once again being labelled a freak and of frightening people at the local swimming baths with the bulge under my costume. I didn’t think I would be able to cope; I thought having an ostomy would be the end of my life as I knew it; that I would become insular and want to hide away. In the end the exact opposite happened…but there again you already know that.

One year on, me and Winnie have been on quite a journey. We’ve won two awards: national and regional. Worked for a national newspaper, including as a lobby and Mirror reporter, specialising in IBD for a breaking news story on a Towie star’s diagnosis with Crohn’s. I’ve ‘outed’ my stoma naked on twitter for millions to see. Travelled up and down the country visiting 100 nude men, the Beatles’ birthplaces, marvelled at Banksy masterpieces, eaten vegan cake while exploring Lincoln cathedral and climbed hundreds of steps to the top of York Minster. I’ve stuffed my face with spaghetti and dairy free ice-cream during an epic Italian trip, which saw me and Winnie ride a gondola and gorge on plate after plate of carbs while traipsing around Rome, Florence and Venice. Watched fireworks on Shakespeare’s birthday in Stratford. Raced through the streets of Chester dressed as a tiny Santa, with a giant Lego man in tow. Come face to face with a naked stranger at a very awkward life drawing class, and read literally hundreds of books during every failed attempt of my reading challenges.

 

My challenges so far:

6: Get nominated for an award – actually 3 and won 2

17: Write a blog with worldwide followers

18: Work for a national newspaper

29: Take a ride in a Gondola in Venice – romantic

37: Take a life drawing class – nude strangers, enough said

53: Run the santa dash – with a giant Lego Man in tow

69: Sell something on Ebay – cost me a fortune!

89: Join a book club – which folded 😦

90: drink a whole cup of tea – I now don’t mind fruit tea

93: Wear a onsie in front of others – a monkey at the Crohn’s walk

96: Ride the London Eye – I love my boyfriend

Of course not much of this would have been possible without the support of my parents, friends and mostly my boyfriend Andy, who has been dedicated driver, and shared many of these remarkable experiences with me, despite all the drama and anguish it has caused him!

It’s not all been plain sailing. Much like the rest of my life with IBD (well even without), the last 365 days have been an emotional roller coaster. There have been very public leaks, ruined dresses, toilet dashes, explosions and destroyed hotel bedding. There have also been pains, vomiting, illness and, of course who can forget, another operation. And how could I not mention scars which reopen, hospitalizations, sceptic collections, eye infections, flu, infected bites, and a lot of run-ins with undigested sprouts, mushrooms and sweetcorn.

The difference has been, while I used to just put up with my illness and side effects and cry silently humiliated by accidents, blood and poop in my bedroom, now I share all the gory details and every humiliation with the world. And in return you guys have given me the greatest present I could ever ask for, a hand of friendship and acceptance. I have been called up by new ostomates panicking over unusual symptoms and been reduced to tears by some of the awful and sometimes hilarious stories of your lives with IBD and/or stomas. I have been moved by the bravery of normal people with extraordinary courage and determination, and their willingness to accept me into such a brave community.

Currently in progress:

1: Learn to speak French fluently – I’m currently a beginner (basic!)

5: Learn to play guitar – well I have the guitar!

8: get 1,000 Twitter followers – @thestomabaglady has 730!

19: Have a novel/short story published – well the writing has started…

30: Have a night out in Birmingham/Liverpool/Manchester/ Edinburgh

33: Complete 30 of Visit England 101 things to do before you die – very much in progress (and expensive)

68: Raise £1,000 for Crohn’s and Colitis UK – getting there

70: Read a book a week for six months – failed a few times – now 3 months in

But it’s not over yet. A year may have passed but I still have until I’m 30, which is (let’s see) 3.5 years away (eek). I have no idea how I am going to get round to all of these exciting and time-consuming (not to mention expensive) challenges by then, but I am determined not to fail, or it will be very public on YouTube, Facebook and WordPress!

So for now, to all of you out there, I just want to say, nothing should hold you back from your dreams. If you want to jump out of a plane don’t let your IBD/stoma hold you back – but please get medical advice! If you want to become an Olympic swimmer, climb Everest, run a marathon, become the world’s best violin player, don’t think you can’t because of your condition. Anything is possible. I mean if I can get 37,000 strangers (well mostly) to view my ramblings who knows what you could do???

I mean I even met Olympic LEGEND Sir Steve Redgrave!!!! What a year!

 

 

Covered in blood – when black tie goes wrong with a fistula

What happened on Friday night will remain etched on my mind forever as one of the worse moments of my life so far with an ostomy. It was also the moment I realised I had to have the operation to make my ileostomy permanent or I would live the rest of my life in fear of humiliation, pain and discomfort.

It was probably the final straw in a very long and painful journey, and perhaps exactly what I needed during these final days before my big op.

This entire week (well last few months really) has been a battle. I’ve been living in a constant flare for so long I can hardly remember what it feels like to be well (how I felt in the weeks after my op). I have no idea how such a tiny bit of bowel can cause so many problems, it must be ulcerated beyond belief to be causing so much pain. But the last few months my colitis has starkly reminded me of what life was like before my operation and the horrific pain simply being alive every day entailed. The impact that tiny bit of inflamed bowel has had has been astonishing, and I no longer know how I coped for 13 years with the constant pain, vomiting and diarrhoea. I was either very stubborn or a saint to put up with the torment for so long, and it is something I can no longer comprehend.

Over the past few weeks my health had gone rapidly downhill. My nose is so stuffed with impetigo – it bleeds and cracks when I dare to sniff or crinkle it, and my eyes have gone bright red and tender. This morning I woke up and one of my eyelids was glued together – something that not only hurts like hell but makes you feel like your tearing your lids apart as you prise them slowly open with hot water. My joints pull and crack as I move and it hurts to lie down. My fistula constantly pulls and tugs, making me nauseous, and is producing around two pints of blood and mucus a day. And despite my bowel not actually being connected to my digestive system, I still, for reasons beyond comprehension need the loo with upmost urgency five or six times a day – but I am unable to fart (cruel beyond words).

I guess the result is I feel like a withdrawing crack addict – the reality is my ulcerative colitis is saying goodbye in style.

Anyway, on Friday, with just days to go until the dreaded op and with doubt still hanging over me like a dark shadow of doom, I pushed away my pain and fears and headed out to a black tie event with my boyfriend. All day my fistula had been playing up; it pulsed in a sickening manner all the way through a law refresher at the Liverpool Echo offices, almost leaked through its bag as I was talking to shocked shoppers outside an alleged knife attack in an Ellesmere Port supermarket, and had general paddies all day. Despite this I dared to put on one of my favourite dresses and head to an evening for my boyfriend’s work.

The evening was filled with the elite from the engineering world, the local MP was there and it was a generally fancy and elegant affair. I was enjoying myself chatting with Andy’s work colleagues and eating some decently edible food, but in never stooped being aware my colitis was not going to be cut away from me without a fight. Safe to say I couldn’t fully relax through fear of my ostomy exploding or fistula leaking, and kept nipping to the loo to check everything was fine. It always was.

What happened was worse than I could ever have expected.

We had just finished eating and I noticed a small mark on my blue dress. I looked down and noticed the mark was a little bigger, then I slowly noticed my dress was damp. My first thought was that I’d spilt water over myself, my second was that my ostomy had leaked. As I stood up I realised the situation was far worse, my dress was saturated. Luckily the room was dark so no one could see the full damage, but I knew right then something had gone badly wrong and this was not a slight leak or, as I’d wrongly thought, a slight water spillage on the front my beautiful dress.

My dress was so wet I could hardly walk as I staggered to the bathroom. As I inspected the damage I almost burst into tears. I’ve experienced some of the most horrific and darkest moments of my life in toilet cubicles (passing out, doubling over, sobbing, sleeping on the floor, screaming out for mercy and help) but this was one of the most panic stricken and desperate of all. It took everything in my power not to breakdown.

The under layer of my thin dress was so soaked in blood I thought I’d been stabbed. As I inspected the damage I started to think I’d started my period or badly cut my abdomen. My knickers were so soaked in sticky mucus and blood I actually, I’m ashamed to say, took them off and thew them in the sanitary towel bin. The blood – which I quickly realised had been caused as my fistula spurted out mucus with such force it pushed off my fistula bag (baby Stoma bag) and shot out all over me instead – and horrific smelling mucus was all over me…it even trailed down my leg…I even had it on my foot.

For a moment I just sat and gawped in total shock. I couldn’t understand how I hadn’t felt it happen. How did I not notice this disgusting smelly substance leaking all over me? Then I realised this was going to ruin my evening and stop my partner spending time with his colleges, and stupidly thought that by moping everything up with tissue I could get away with it. But I soon realised no amount of toilet roll was going to shift this, I was simply caked in it.

By the time we got home I was in tears. As I got in the shower I stared at my body, at my fistula, and i wanted to rip it from my body, I wanted to scream and scream how much I hated the hand I had been dealt. And as I changed the blood soaked bags I took pleasure in knowing it would be one of the final times I would have to deal with this horrid second bag, which leaks and drips every couple of days and leaves my skin blistered and weeping.

By the time my tears were dry and dress was in the wash I realised that this was exactly the sort of humiliating, painful and exhausting moment I needed to realise I was making the right decision. People may not be able to tell I have a ostomy bag (I often forget) but they/I sure as hell know that troublesome fistula is there. Especially when it leaks repulsive smelling grunge everywhere.

And you know what everyone, especially me, could live without that forever.
In the words of the Lion King – it’s time!

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The nerves set in: My emotional week before my ostomy op

For the first time I have really broken down. After years of holding in emotion, grief appears to have suddenly hit me like a brick wall. It appears to have come out of nowhere and now the gates have opened, rather like this year’s onslaught of food waters, I just can’t seem to get the tears to stop.

just before the tears

I just don’t understand what’s happened to me. A month ago my surgery to make my ileostomy permanent couldn’t come soon enough. I was literally begging to be taken into theatre. Now the thought makes me feel sick.

Perhaps it’s just nerves. Perhaps I’m starting to feel like a blushing bride the night before her wedding. But now I’m starting to worry it’s more than just nerves. I’m starting to think I’m rushing into this and I’m simply too unprepared to have this operation. Perhaps I should have considered the other options, such as a J-pouch, instead of rushing in head-on to the full-blown forever stoma.

I guess the big D – doubt – has started to set in.

Ever since I returned from London I seem to have lost the ability to be happy. I can’t seem to think a positive thought. Every joyful moment seems to flit past me, racing away from me like a bad smell. It’s a shame as I’m really trying to enjoy my last few days of freedom. I think I’m feeling a little depressed, but I’m not sure if it’s the prospect of the long road of recovery ahead of me in the next few weeks, my frustration over my career, or the fear of going under the knife again which is forcing me to plaster this fake smile on my face.

Yesterday I was just doddering along getting on with my perfectly normal weekend when I suddenly broke down. I looked in the mirror and realised that this was it, this was what I was going to look like forever. And I just buckled. It was suddenly as if all my problems – concerns about going under the knife, fear of the pain, the time off work, the recovery – bubbled  to the surface. I wept and wept. I thought about my life and everything that had happened and I just couldn’t stop crying. I felt like the tears would never stop.

I don’t understand what’s happened. Even sitting at work today I felt my ostomy start to fill up and I felt the overwhelming urge to bury my face in my hands and start weeping. I held it in until I left work, but the moment I got out the door I just broke down.

This new wave of emotional vulnerability has totally flummoxed me. I’m a naturally emotional person, but I don’t think I was even this upset when I needed the first operation a year ago. I was frightened (actually petrified), upset, but I wasn’t a blithering wreck, but there again maybe I was just too weak and helpless by then to even have the strength to think about it let alone cry.

I don’t want to go this thin again

This past year has been one of the best of my life. I have felt healthier, fitter, more energised, and had more success than I dreamed possible. Yes there have been a lot of challenges, and, yes it hasn’t been entirely pain-free or easy, but it has been better.

I’m surprised I suddenly feel so bothered about the way my ostomy makes me look. So far I think I’ve accepted my new body with open arms. I have welcomed my scars, bag and even (to some extent) come to terms with my horrible fistula. I admit I still struggle with the N word and haven’t worn a bikini in public, but I know everything will look so much better when I don’t have a fistula bag filled with blood and mucus leaking everywhere every couple of hours.

I know I’m still beautiful and I know that I should be proud of my life saving bag. But something about these past few days has made me think this is not my life should be like. It’s made me wonder if I will come to regret not trying other options in the next few years, decades etc. I’ve suddenly realised that I will still have this bag when I’m 80 – if I live that long.

I guess it’s all becoming a little bit real, and I need some support. The excitement of working at the Mirror is over now and I have too much time to think, worry and frighten myself out of having the operation. I know I have to have this operation, but I worry that this time the hospital hasn’t done me any favours. Before it was my only option, without the operation I would probably now be dead. This time they left me cold turkey and who knows if I could have ‘survived’ with a shed load of medication to try and bring my inflamed rectal stump back under control.

And NOT THIS AGAIN EITHER

I know this is my chance and I need to push my worries aside, but will I regret this choice in the future. Will I wish I had tried the other option first. A permanent ostomy, having my back passage sewed-up, it all seems so final, so irreversible – I suppose that’s because it is.

So I now have nine days to worry and bite my finger nails down to the cuticle.

Part of me wishes I hadn’t given up drinking yet.

 

Surgery date looms – just over a month until my ostomy become permanent

Tomorrow I’ve got my pre assessment for my surgery and to tell you the truth I’m terrified. It’s been almost nine months since I had my first ever operation and to say last time I wasn’t worried would be lying. I avoided surgery for almost 13 years through misinformation, hope and fear, but when I realised I had no other option but having an ostomy, I didn’t look back….I grabbed the surgery with both hands knowing that anything was better than living life looking through permanent black spots of agonising pain and wanting to die.

Last time was an emergency, I was too weak to really understand what was going on. Yes I dreaded it, and yes I was afraid. The week before the operation I was frightened but I had resigned myself to a life with a permanent ostomy. I thought that was the only option, so when I woke up with a temporary ostomy I was angry. I’m still angry. Perhaps that sounds unreasonable, but I told my surgeon if there was any sign of colitis in my rectum they should remove it all once and for all – it was bad, it’s still bad and he left it in.

I know there are all sorts of reasons for that, but nine months down the line I’m not well, I wouldn’t describe myself as ill either, but I’m living with the consequences of my surgeon choosing to leave that rectal stump in. My fistula causes ripping pain through my stomach (nothing like when my colitis was bad), squirts out foul mucus and bags full of blood and leaks causing my skin to blister and bleed. I still struggle with the bathroom (but not half was much as before) and infections. And I’ve just about had enough.

But despite currently having two bags, it’s not all bad news. Since I got Winnie (Stoma) I’ve had the taste of what life could be like without a colon. Yes, there are good and bad things and it’s not been the easiest thing in the world to get used to, in fact it’s been tough and at times upsetting, but life has never been better. Most days I barely think about my ostomy, yes the same can’t be said about my fistula, but most of the time my ostomy gives me absolutely no problems. And if all it takes is for me to have that forever to have a life free from fear and pain and torment I’ll give it a go thank you very much.

I guess I’m not worried about having my ostomy made permanent, I’m frightened of the surgery, but I’m even more frightened of the recovery. Last time a lot of things went badly wrong, there were a lot of mistakes made in my aftercare and a lot of things happened which I have made an official complaint about. It’s sounds wrong but I no longer trust the hospital who treat me, I have lost confidence in their ability to help me recover. These are not unfounded fears I have kept to myself, they are based on real things that happened; my stomach bursting open; my epidural placed wrongly causing my leg to feel paralysed; being given milk for breakfast constantly despite being lactose intolerant; food going missing; pain killers not being administered; being left in dirty clothes – the list goes on.

So I’m frightened. I know I have to have this operation if I want to get on with my life. Despite everything I still trust my surgeon with my life. I know I have to face the surgeons if I want a life free from colitis. I just hope I have the strength to do it.

Free prescriptions with an ostomy – it’s about time my IBD has cost a fortune

I’m so sorry for not posting for the past few days, it has been unbelievably hectic at work. But after a day hiking up mountains and ransacking my flat, throwing out all the rubbish me and my partner have collected over the past year, I thought it was time to update you all on one amazing thing that happened this week.

I now get free prescriptions.

For the past 13 years I have paid through the roof to suffer from Crohns/Ulcerative Colitis. In fact the prescriptions have got so expensive I have had to rely on my parents to pay for the endless amount of green forms that I have needed to get filled in on an often daily basis. In fact my parents soon realised that it was more than worth shelling out the £104.00 for a prepaid prescription card. In fact paying up front for my prescriptions, instead of shelling out £7.85 for each item quickly saved both me and my folks a fortune…indeed just one month after paying out the cash we had got our monies worth after I was prescribed a shed load of painkillers, steroids, ensure drinks, suppositories, asacol – to name just a few of what the doctor decided I needed to shell out for – which would have cost around £80.

For people living with chronic conditions or who have children with illness prescriptions are too expensive. It’s that simple. If you have an ongoing condition simply buying your daily medication can tip your finances over the edge if your already struggling to make ends meet. I have no idea how families with one or more people needing constant medication manage to even put food on the table. And it’s not only the maintenance medication that needs to be forked out for every few weeks; it’s the emergency steroids, and the constant antibiotics, eye drops, haemorrhoids, joint medication, skin medication, creams, lotions and potions and all kinds of other things inflicted upon us due to our low immune system caused by our chronic illnesses.

I think if I’d kept all my prescription slips over the past 13 years I would be drowning in a sea of green forms. I don’t think there would be anywhere for me to lie down; I wouldn’t be able to cook, bathe or even sleep…let alone find the medication I’d paid my entire salary for to keep me alive. And I think by now – if it wasn’t for help from my parents and their amazing idea to get the prepaid card – both me and my whole family would have forked out way over £10,000 in money for my medication alone – it’s probably been about that much anyway!

If it wasn’t for my parents paying for a lot of my main prescriptions I honestly don’t know what I would have done. On a trainee reporters wage £7 plus two, three, four times a week would have been too much and as a student it would have meant eating baked beans straight out of the tin – that wouldn’t have been good for my IBD diet at all.

I’ll attempt to do a sum here – if I’d paid what it costs now £7.83 for one prescription a week (I know it used to be less but this is just to prove a point) for 13 years it would have cost:

ONE PRESCRIPTION PER WEEK = £31.32 a month (I think) eek my maths are not great

£31.32 x 12 = £375.84 a year

= £4,885.92 for 13 years

And that’s only one prescription a week – some weeks I still have five or six. I would probably say that until I had my ostomy last year I was probably averaging four prescriptions a week – which could go up to eight or nine – so that makes it more like £125.28 a week or £1,503.36 a year or £19,543.68 over the past 13 years. And that doesn’t even take into account my ostomy bags and accessories. Oh, and all the years of Infliximab and other infusions which were (not sure about now) paid for by the NHS.

So a couple of weeks ago, after seeking some advice from the trusty internet, my mum encouraged me to go to the doctors to see if there was any chance of me getting free prescriptions because of my ostomy. And there was. Because I have an ostomy and a fistula I am eligible to get free prescriptions. I know that most websites say that you need a permanent stoma, colostomy or fistula to be eligible for free persriptions, but my doctor told me to apply – and it worked.

Free from now on

And i’m not cheating, my ostomy will become permanent this year. And, you know what my Crohn’s is not going away. In my opinion anyone with this condition should be entitled to free prescriptions. I know we don’t have it as hard as the US, I won’t even claim to be medically bankrupt, but if I’d had to pay for three years of infliximab I would be.

And if things couldn’t get any better, the form says that even if your medical situation changes you can get free prescriptions until your card runs out – they last five years and for all that time all of your prescriptions, whether related to your ongoing medical condition or not are free.

It’s about time, that’s all I can say.

For more on free prescriptions if you have an ostomy or colostomy see http://www.stomawise.co.uk/lifestyle/prescriptions-medex

For more on prepayment certificates – they really are worth it – http://www.nhs.uk/NHSEngland/Healthcosts/Pages/Prescriptioncosts.aspx

 

How to apply for a Medical exemption certificate

To apply for a Medical exemption certificate ask your doctor for an FP92A form. Your GP, hospital or service doctor will sign the form to confirm that your statement is correct. At your GP’s discretion, a member of the practice who has access to your medical records can also sign the form.

Your certificate will be valid from one month before the date that the NHS Business Authrority receives the application form.

The MedEx lasts for five years and then needs to be renewed. You may receive a reminder that your certificate needs to be renewed. If you don’t receive a reminder, it is your responsibility to ensure that it is renewed.

You can find more information about the application process and refunds on the NHS Business Authority’s website.

Finding the right fit – the struggle to find the perfect outfit with an ostomy and IBD -Part 2

Finding the right outfit which makes you feel confident when you have an ostomy is nothing short of a challenge. I spent the whole of this weekend feeling like I was about to have a nervous breakdown traipsing around shops trying to find the perfect work outfit for a very important conference next week. I had the entire Trafford Centre to go at – that’s hundreds of shops – could I find anything? Could I hell!

Can you tell I have an ostomy?

Some items of clothing just don’t seem to work when you have an ostomy. Take for instance the simple pencil skirt. Being just 5ft 2 inch and with a tiny waist (which, yes I know, many would kill for) I have always found it difficult to find skirts and trousers that fit perfectly, without leaving metres of loose fabric hanging from the backs of my legs, or fitting all the way up but then pushing painfully against my stomach when it bloats. But now I have Winnie, finding the perfect pencil skirt has become a seemingly impossible task. Every skirt is simply too long – going past the glamorous knee skimming length and travelling just that slight bit further past my knee caps in order to resemble an ill-fitting tent. The skirt always fits at the hips, then gapes at the waist so much i could probably fit another person inside with me if I so desired. The effect rather resembles that of a child wearing her mother’s clothing, but with the added impact of the skirt being just tight enough in the wrong places to show off Winnie, lumps and all, to the whole world. Not the best look for a conference where I want to look smart, classy and professional.

The result of the shopping trip was very gloomy. To imagine my mood you would need to picture a slumped person walking around the Trafford Centre with a rain cloud hanging over their head, shivering and shaking as they got soaked by the rain. I was a dark moment. I’m honestly surprised I didn’t have a nervous breakdown in the changing rooms as the piles of jackets, shirts, skirts and trousers, all neatly pressed to start with, ended up discarded in piles around me. Scrap that, with the depression that descended on me as I left the umpteenth retailer as the shops closed following hours of browsing, I’m grateful I didn’t smack the changing room assistant who smiled at me as I handed her the pile of ‘not quite right’ pencil skirts, smirking and saying “oh, did you not find what you were after?” – do I look like I have? ARGH!!

I left the Trafford Centre empty handed…who does that? And sulked the whole way home. What made it worse is we went back the next day, and yes, I came back with my first ever iPad (I will talk about this another time) but without any clothes. What made it even more infuriating is Andy came back with a jumper, and had no problems whatsoever in picking a handful off the rack all that fitted beautiful before choosing his favourite and buying it….a process that took mere minutes…how unfair is that.

Just after my op – all skin and bones, but no ostomy bag in sight

I ended up back at trusty Tesco, and place that rarely fails me for cheap but decent quality clothing, somewhere I have found more clothing to fit me following my surgery than anywhere. I don’t know why that is. It could be because it is cheap enough to try things I wouldn’t usually try, or I could be that because it’s close to my work I’m able to spent longer browsing than normal. I like shopping there as I can bring things home to try them on; changing rooms are a horrible experience for those already self-conscious because of ostomies; mostly because of the gaps in curtains and lack of privacy, but also because of the glaring mirrors and the disappointment of never being able to find anything to fit is aired in public, with the woman next to you getting to hear the gleeful sound of another woman’s sign of frustration that the outfit she was counting on just doesn’t look right.

The result of my shopping trip was the same as ever. I returned home with bags full of clothing, all of which had looked perfect on the hanger, but in reality looked ill-fitting and dowdy on me. The trousers rested on Winnie, causing my ostomy bag to balloon out above the waist-line, creating an outline underneath my new blouse and making it painful to sit down. The skirt was once again too long and clung in all the wrong places. In the end my room was littered with a pile of discarded garments all of which needed to be returned, or hang forgotten in me wardrobe for the next five months before being carted to a charity shop. I used to return impulsive purchases through guilt, now it is through anger!

My sense of style has changed since having my operation. Don’t

A new style of skirt for a new me

get me wrong a lot of my favourite clothes still fit, but I’ve had to make some tweaks in the bottom department to accommodate Winnie. I guess its more about confidence than anything. About feeling like people can’t see Winnie when she fills with gas or is going into overdrive. I always try on clothes when Winnie is getting about half way full – I won’t risk fully full in case I try on something to small and she explodes – but I like to be able to see how the clothes fit and whether you can see her when she is getting close to an explosion. In that way I always know what that party dress will look like in a worse case scenario moment. Sometimes she swells up when I’m trying on, and I’m left with minutes to struggle out of an outfit to get to the nearest MacDonald’s loo – usually the zip gets stuck at this moment or I end up flailing around with a dress stuck on my head.

Either way, what I think this ramble has been trying to say is that finding a sense of personal fashion with an ostomy is hard. It’s been seven months since my op and I still haven’t found an outfit which makes me feel as sexy as I used to. I have found those that make me feel fabulous, womanly and cute, but not really sexy. You might disagree, but it’s not easy, when the only advice when you have the op is to choose where you want you X mark (for your stoma) drawn so that your favourite jeans fit – she ignored it anyway and I had to give them away!!!

In my next post I hope to share some of the tips I have gained since my operation and some of the outfits which show no one can tell you have a stoma – it’s all about the confidence ladies!!!