Day 6: What to wear with an ostomy? What ostomy? #7daysofIBD


I’m no fashionista, but I like to look good – who doesn’t?

One of my biggest fears before my surgery was that I’d spend the rest of my life wandering around in sack-like clothes or simply become a nun.

I envisioned a future filled with sweat pants, baggy jumpers and shape-less dresses – looking like a washed-out celeb in a Pineapple tracksuit.

I also imagined a life without romance, I think I believed that I’d be better off living in a hovel somewhere than have my bowel taken away.

I’m ashamed to say that as a teen and a young woman vanity was the main reason I stubbornly refused the operation for years despite being in hideous amounts of pain.

Having the operation felt like giving up my youth – it didn’t matter that my young life so far had been marred by illness, and the operation promised me a new lease of life.

I was horrified of what it would do to my already shattered confidence and street-cred; basically as a teenager I simply couldn’t think of anything worse than having an ostomy bag.

I’d rather put up with the accidents, the blood and the constant toilet visits, than be thought of as a freak – well, more than people already thought a young girl who spent more time in a bathroom than the playground was.

I mean I wasn’t married, didn’t have kids, what would I tell people, what would they think?

The people they sent to talk to me where lovely, well and happy, but they were in their 50s and 60s and had grandchildren – I could’t relate to that.

Now I realise I needn’t have worried one bit: unless you know about it, or Winnie announces herself, you wouldn’t have a clue she was there.

It was only when I was in my mid 20s that the surgeons finally got a firm grip on me and this time I couldn’t and didn’t really want to get away/

Straight after my first surgery (well as soon as I had the energy) I went through my old clothes and packed anything that was really tight into a bag and shipped it off to a charity shop.

I needn’t have done, but I’m still glad I did.

Ironically having surgery did my wardrobe a lot of good: it made me grow up, and stop wearing outfits that honestly should have been left back in my student drinking days, or really never have seen the light of day at all.

Now

I get a lot of questions about what I wear, and how to dress with an ostomy.

My answer: wear whatever you want, what looks good, but most of all what you feel the most confident in.

You don’t want to wear something where you are constantly patting your bag, checking it, worrying that someone can see it – but you don’t want to feel like you’re wearing a smock either.

I’ve been pleasantly shocked at the array of things I can still wear. To be honest I can wear anything: I simply choose not to wear some things.

For example; I wouldn’t wear a crop top or a dress with gaps in that show my bag – I could, and good on anyone who does, I just don’t feel comfortable doing that.

I love maxi dresses and in total contrast short skirts, but I wouldn’t wear a skin tight body con dress, mostly because if my bag expands it’s too uncomfortable.

I also wouldn’t really wear something too sheer or that clingy gold material, mostly because you can see the shape of my bag through it.

On the days I feel weird from my bag (yes I do have days when I feel really self conscious about it) I distract attention from my stomach (not that anyone can see) with loud makeup, big hair and well, fabulous shoes – not that I need an excuse.

I usually have a little scarf in my handbag for if my bag fills up and I want to hide it – it’s a little handy tip I got from another blogger.

But really I can wear, and do wear, whatever I want: suits; jump suits; short dresses; pencil skits; ball gowns; see through blouses… and even shorts!

I do struggle to find a decent pair of jeans, but that’s because I need high-waist, a petite and a six, which is a hard combination to go by – if you are looking I find Next is the place to go.

I tailor what I wear to how I feel, what I’ve eaten (sometimes) and sometimes avoid eating certain things if I know I’m going to be wearing that tight dress.

I love the glamour – but some days I like my sweat pants, or PJs and baggy jumpers.

But that’s because I’m human, not because I have an ostomy.

 

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Ten fashion tips for young women with ostomy bags – my experience so far


So here we go, after just over seven months of living with my temperamental stoma and unplanned fistula here are some of the lessons I have learned concerning looking trendy and feeling confident while living with an ostomy bag. As a young woman finding clothes that fit, flatter and make you feel sexy is hard enough without having to worry about what your ostomy looks like, I’ve found the best way to deal with that is to wear whatever you feel comfortable and confident in. If that’s baggy jumpers and sweat pants go for it. But I think the best way is to show off your figure, flaunt what you’ve got, and wear your body with pride…ok, I’ve not braved a bikini yet, so maybe I’m not great a role model but I really don’t think hiding under layers of pyjama-like clothing, or resorting to prison-esk jumpsuits is the way forward. You might disagree, some of this sounds a bit preachy – but give me a chance:

  1. Avoid the “bin liner look” : don’t choose an outfit just because it hides your ostomy bag

If you approach every shopping with the attitude that every outfit has to render your

THE DRESS - I would never have worn this b4 Winnie - she is so much more cool than me

THE DRESS – I would never have worn this b4 Winnie – she is so much more cool than me

figure unrecognisable just because you have a bag of, well crap, attached to the outside of your body, you will (in my opinion) end up feeling worse than your stoma when you’ve eaten too much high fibre stuff. My tip, don’t hide away. Your body is amazing, you are amazing, and that should be celebrated, not hidden under baggy jumpers and sweat pants. Just because you have an ostomy it doesn’t mean you shouldn’t feel sexy….in fact I THINK IT MEANS YOU SHOULD FEEL SEXY. If you see something you look damn good in, buy it, wear it out and see how amazing you feel. Try not to worry about if people can or can’t see your ostomy – that’s hard, and I can’t talk – no one can see it just be yourself and you’ll be surprised to learn that no one cares if you have a little lump under your dress. If they’re looking that hard they must like you anyway, or be envious of your show stopping dress.

2. Use your operation as a chance to change your wardrobe : don’t hang on to those body con dresses which will make you feel like crap

In the weeks following my operation I bit the bullet and went through my wardrobe and got rid of all the über skin-tight dresses I knew I wouldn’t feel confident enough to wear again. Yes it was painful, yes I’m not ashamed to say that I cried, but now they’re gone and I no longer have the temptation to stare at them longingly and feel upset, or worse try them on and get upset. I’m not ashamed of my body, and I didn’t get rid of them because I will never wear anything figure-hugging again – I got rid of them because I knew I would no longer feel confident in them or comfortable. And you know what I don’t miss them. Since that day I have changed my sense of style and I still look great, if anything having an ostomy has made me more adventurous with my fashion sense and less like the rest of the crowd in the same Primark body con dress.

3. Try tops which have embellishments, frills and a different shape – so they don’t cling:

I’m not talking Elizabethan style frills, just a few little touches to draw attention away from your bag. You might not feel the need to do this, but I found this helpful when I first started going out following my op. I didn’t want people to see my bag straight-away, I wanted to cover it, so I found having a few little frills or a loose belt worked really well. Also try tops where the waist line flicks out, or floaty shirts, which I’m told by magazines are really “in trend” right now. Even wrap-around tops can work well as the crease covers any bloating easily.

4. Raise the waistline – try high-rise jeans, skirts and dresses with higher waist lines

I always avoided high-waisted garments; to be fair I always thought they looked pretty ridiculous on anyone who wasn’t a six-foot stick thin Victoria’s Secret model. I especially despised (and still do) those high-waist shorts which show more of young girls’ backsides than if they were wearing Bridget Jones’ knickers; you know the ones I mean, the ones that leave nothing to the imagination. Anyway since my operation I’ve had to throw out my well-worn loyal skinny jeans, which rested rather painfully on my stoma, cutting off circulation and causing minor explosions and a lot of discomfort in car journeys, and I’ve fallen in love with high-waisted jeans. Well not all but some amazing petite skinny ones from Next. I searched a long time for them but finally bit the bullet and bought them for £45 but I’m hardly ever out of them. They fit perfectly and totally cover Winnie. With a IMG_3866top tucked in you would never know I had an ostomy – until she swells up, and even then it’s not that obvious. I’ve also found little skirts which have high waists teamed with a cute vest top make a good match, try and get vertical stripes, seems to give the illusion of a tiny waist.

5. Amazing shoes – go to town with your feet:

If your not sure about your outfit, or don’t want to draw attention to your stomach area (and we all have those days) go to town on your feet. Yes, that’s right I’m telling you to go out and get amazing shoes. When I say amazing I mean killer heels, in daring styles and colours. You know those kind of shoes that everyone comments on, the ones that people say “Wow I love your shoes” without even paying attention to your outfit. And it doesn’t have to cost the world, shops like New Look, Next, Primark even, (my favourite Dorothy Perkins) have show stopping shoes which won’t leave you crying and up all night worrying about money.

6. Go daring in the makeup department:

Ready for the Races - THE DRESS

Ready for the Races – THE DRESS

Feeling under the weather or not very confident, I find going bold and bright really helps. Since my op I have started to brighten my mood by wearing bright pink lipstick, painting my nails as often as I can, and really paying attention to my hair and makeup. Ok sometimes I feel like I’m becoming a cartoon character; before my op I wouldn’t have dreamt of wearing bright red lipstick to work or painting my nails all different colours – but it makes me smile and I find it makes people around me happier. Of course always bare in mind what’s appropriate, but if you can always add a bit of colour, you’ll be surprised how much more sexy you will feel.

7. Get underwear right:

Ostomy underwear can be ugly (see previous post), but sometimes the hold-it-all-in underwear, no matter how ugly it is, can provide a boost of confidence and a seem free look which can be attractive. Just be aware that if you find yourself in a certain situation (you know what I’m talking about) to dim the lights – most are worse than Bridget’s granny pants when they’ve been put in with a dark wash! Try to get sexy underwear. Wearing it will make you feel better, prettier and happier, especially if you’re having a hard time with your ostomy. I save my granny pants for especially bad days and being at home, but on nights out I like to wear the no VPL high rise pants from M&S. Some people swear by the shaper underwear – you know the underwear that sucks you in – I’ve not tried it so I can’t, but in the right situation I might give it ago.

8. Tights can add extra security and seam free look:

If you have an ostomy it can be hard to hide the lines. At first I was worried wearing tights would make emptying my bag harder, and leave me more prone to explosions and leaks. The opposite has been true. I find wearing tights helps to give me added security holding my bag firmly in place come what may.

9. Always carry a scarf: an amazing tip I’ve picked up along the way

I can’t remember where I saw this, but a fellow ostomate shared this tip on Youtube a while back. Always carry a scarf in your bag. It can be one of those thin fashion scarves, and as pretty as you like, or a full blown scarf in Winter. I always carry a thin one with butterflies on it which is feminine and delicate. Basically the idea is that when your ostomy bag fills up and your a) not ready to empty it, or b) unable to empty it – you whip out the scarf and drape it over your shoulders so it rests where your bag is and covers the area that’s filled up. Sounds too simple to work, but it really does. It’s so simple and adds a touch of class and bohemia to any outfit. Crazy right.IMG_1426

10. Don’t care what people think – you’ll be shocked how little they notice

Shockingly enough hardly anyone will ever notice your ostomy bag. No one will ever know you have one, unless of course you choose to tell them or have a full-blown Marylin Monroe moment while waiting for the bus (has happened to me far too often). Most people wouldn’t say anything if they even noticed. For God’s sake James Bond has walked into bars for years with a revolver down his tuxedo pants and no one has made a crude joke…so why would they notice your ostomy bag. The only way people will is if you keep patting it – a habit I’m trying to stop – and fussing with your outfit. Wear what you want, enjoy fashion, feel confident, you’ve been through hell and back and now its time to start enjoying life….live it.

Trying to find the right fit – getting clothes to look right with an ostomy and IBD – part 1


After a few nightmarish days of running around the Trafford Centre in search of a pencil skirt which fits a thin person with an ostomy bag and finding absolutely zilch, which lead to a full-scale breakdown, tears and wailing of ‘I’m disgusting, just look at me’, I thought I would do a series of blogs on trying to find clothes that fit and make you feel a million dollars when you have IBD and/or an ostomy bag. Let’s hope it helps to stop you spiralling into a shopping induced whirlpool of self-pity.

So here we go, over the next three days I am going to blog about my fashion dilemmas, what not to wear when your bag is on overdrive, and how to make yourself feel instantly happier, braver and more confident even when you’re about to disappear into a world of pain and misery…oh, and the biggest tip of all – avoiding white pants.

Over the years I have really struggled to find clothes that fit and look right. Years of

Work - some outfits have lasted the op - this is one

Work – some outfits have lasted the op – this is one

weight fluctuation due to Crohn’s/Colitis flare-ups and lengthy periods of hospitalisation have caused chaos in the wardrobe department, meaning I seemed to have developed two wardrobes: one for when I’m sick and the other for when I’m well – I’m sure you know which one I wear most often.

My wardrobe is divided. One side appears to be clothes that when I’m ill I wouldn’t be seen dead in for fear of either looking like a vampirish skeleton or, on the exact opposite side of the scale, looking like a beached whale. I have loose fitting clothes for the days I look like a snake that’s swallowed a hippo – you know skinny but with a bloated belly the size of a small planet – and I have hundreds of too big jumpers which can be layered up to give the pretence that I’ve not lost that disastrous amount of weight again – a trick I picked up years ago in an attempt to stop my spiralling illness upsetting my friends and relatives. I’m 99% sure this doesn’t work anymore, but I have to admit that I find comfort in wearing clothes which bulk me out when I’m looking painfully thin – oh, and it does help to keep me warm.

As a self-conscious woman suffering from IBD wrecks total havoc on my daily getting ready ritual. Even something as simple as getting dressed for work can result in a room strewn with clothes and a total meltdown. Some days even silk hurts my swollen belly. Kicker lines dig painfully into my hips, bra clasps rub sores into my bony spine, and dresses pull uncomfortably as my stomach spasms underneath the material. I’ve had days where nothing fits right, where everything causes discomfort, or in some weird magic trick the clothes that fitted perfectly just days before are transformed into giant’s clothes. Some days my room ends up looking like a Very catalogue has exploded all over it, with clothes strewn everywhere. On days like that I’ve considered going to work in my PJs, or even naked – I’m sure that would raise a few eyebrows in court.

Summer dress - teamed with tights = winter winner

Summer dress – teamed with tights = winter winner

In previous posts I’ve talked about how I expected to feel unattractive following my surgery; how I expected to not want to wear anything but trackies for the rest of my life. When I first took off my baggy joggers and pjs after months of recovery I vowed never to go back to them again. Ok, so I haven’t stuck to that. As I write this I have to admit I’m wearing my team GB joggers teamed with a far too big jumper. Yes, I look dreadful. Yes, i wouldn’t go out like this (well I would just to get some sweets or a snack) but I’m comfortable and that’s what joggers are made for, pigging out days and poorly days. I don’t feel guilty about wearing them occasionally but since my surgery I have realised the value of dressing to make yourself feel good, look good and to increase confidence. I’ve realised that when I’m wearing my trackies I don’t feel womanly or attractive, that even when I’m feeling ill, bloated or tired, putting on a nice dress, doing my makeup and hair and pulling on a pair of heels instantly makes me feel better, even if inside I’m crying.

Post surgery has presented me with a whole new world of problems in the fashion department. The best thing I ever did was to bite the bullet and through out all my ‘I will never wear you again’ outfits which would have been a daily reminder in my wardrobe of the figure I once had prior to the arrival of Winnie (the stoma) and my un-scarred stomach. I thought that I would miss those clothes; the figure hugging body con dresses I used to dance the night away in, the bikinis and extremely uncomfortable jeans – I don’t miss them one bit.

At first I stubbornly tried to dress the same way I used to. It worked for a while as I’d lost so much weight the added width of my ostomy bag on my waist line didn’t make a dint on my waistband, but once my muscles and weight started to return I learnt the hard way that the well-worn skinny jeans were no longer an option now that I had my new best friend. Those were my favourite jeans. They were cheap but comfortable and fitted me like a glove, so I carried on stubbornly wearing them, despite the fact they were crushing Winnie to death. I finally threw them away after a few very unfortunate incidents on long car journeys, where, the lesson was learned that a tight waist band resting on an overactive ostomy = explosion. Those jeans were not made for sitting down.

More tomorrow…in the meantime if you have any fashion tips please get in touch and share them….you could help someone (me included) feel more confident.

 

Ostomy underwear – is it worth it?


Every woman has secrets in her underwear draw, but since my operation mine has been filled with the most hideous underwear known to mankind. Gone are the lacy shorts and girly panties from the days before Winnie, now my top drawer is filled with underwear that even Bridget Jones would be ashamed to be caught out in.

My comfizz underwear - amazing support but not sexy!!

My comfizz underwear – amazing support but not sexy!!

Ok, maybe I’m being a little unfair. The ostomy underwear has saved me from some extremely humiliating moments post surgery, where bus loads of pensioners, tourists and even crowds of rich race-goers have been saved from the sight of my full to bursting ostomy bag and red raw scar by my sturdy prescription pants after rouge gusts of wind whipped up my skirt around my waist Marilyn Munroe style while walking through Chester city centre.

But although they were saved from a flash of Winnie the onlookers did get a flash of most probably the most ugly knickers they have ever seen. You may disagree but all the underwear I have had to date which caters for women with a stoma either resembles washed out grannie pants or those magic knickers Gok Wan enjoys promoting so that all us girls can suck in layers of fat and miraculously loose inches off our waists to fit into that dress which is two sizes too small.

My ‘prescription’ knickers are exactly as they sound. Yes they might be a step up from the paper ones you get given at tanning salons (which I can never figure out which way to go on), and yes they may cover your modesty completely by being the size of a tent, but they definitely look like the sort of thing you would find in any NHS stock cupboard. They are in basic colours – white, black and navy blue – and have a little bow along the seam, where some thoughtful designer has added a little frilly trim in the attempt to add a tiny bit of femininity to the otherwise unflattering look the underwear gives. I class this underwear in the same bracket as my laundry day knickers, or the ones I used to wear as period pants as a teenager…I definatly wouldn’t go on a night out in them, and I even have a separate part of my draw reserved for them just so I don’t put them on by mistake (which I assure you wouldn’t be easily done).

I must sound hideously ungrateful. I know that these knickers are designed to help me feel more confident about life with an ostomy. I know that the little hidden pouch is meant to make me feel more safe and secure. I also know that millions of women probably adore this underwear and it has probably helped so many people to regain their femininity and adore their figures again. But this blog is all about me being honest, and I have to admit that when I am wearing the special underwear I feel far from special, and to be fair, I don’t think Winnie enjoys it too much either.

I have the whole range, white, black and navy blue. Why? Because when I had the operation I was given a pack by my stoma nurse which had leaflets in about all the products you could get that would make you feel more attractive with your ostomy. I have to say I was excited by this…I had been dreading life with a stoma and the idea of my boyfriend seeing my bag made me feel sick to the stomach, so I thought some sexy underwear would do the trick. Unfortunately what the nurses failed to tell me was just how shockingly expensive this specially made underwear would be for me to buy. For the price of one pair of the anywhere near nice knickers these brochures had to offer I could have bought at least one high quality sexy, lacy launderie set from a high street store.

Some of the stuff in the brochures was nice, and yes I think it would have made you feel much sexier. But it would seem feeling sexy with a stoma comes at a price, and it is not a price everyone can afford to pay.

I ordered as much as I could on prescription. And when it came I was excited, that was until I put it on. The knickers are plain (which is what I like), as high-waisted as Simon Cowell’s trousers, and extremely high legged. Ok, I’ve always had my bad Crohn’s day panties and I have to admit since I was a teenager I have always carried around a spare pair of panties in my bag in case of a IBD related accident, but these are really something else. Winnie and Oscar (my two bags) get squished together under a protective panel, which, in fairness to the designers does help control them and hide them from the world when wearing clothing, but makes the plastic opening to the bag dig into my groin in a really painful and uncomfortable way. And, I tend to find that the knickers can be counterproductive as you don’t notice your bag is full until you really are on the edge of a nuclear explosion!!

There are other designs available, but from the leaflets I have to say the leopard prints and garish colours just don’t look classy enough for me. If I didn’t have an ostomy and was forking out those kinds of astronomical prices I would be expecting silk and pretty designs, not bold floral patterns, and that goes without saying you will never find a bra to match them.

Ok, I have to admit I do wear them when I’m doing exercise or going on a long day out where having the extra support wouldn’t hurt. But the moment I get home I peel them off as quickly as possible in favour of my pre-op shorts and knickers. To date the only ones I have grown to even slightly like are my Comfizz knickers and vest, which help to keep my forever peeling away bags and dressings in place by sucking me in like someone has wrapped me in cellophane. Credit where it’s due, these vests and pants really do hide your bag, they smooth me down so much you wouldn’t know Winnie existed, but peeling them off at the end of the day, you will breathe a sigh of relief as your ostomy escapes the tightly gripped prison and gets a gasp of freedom for the first time in hours.

I just don’t understand why there can’t be more choice out there, and why there isn’t more tasteful underwear for younger women who just want to wear something that is comfortable and sexy. Since my bra shopping experience last week, where I felt the need to warn the poor lady (I don’t really know why) who measured me in M&S not to be alarmed as I’d had an operation (I think she expected to see blood and guts, not just a little rash and a clean ostomy bag), I’ve decided to wear whatever underwear I feel comfortable in.

Ok, I’ve not thrown it away, as it has its uses, and, well I’ve paid for it with my taxes anyway, but I’ve decided to go back to the land of no VPL, silk and french knickers (I know I’m sharing too much here). I just want to feel good. My new bras make me feel sexy and feminine and teaming them with NHS pants just doesn’t seem right.

Anyway I think Winnie likes the feeling of just being free.

N.t: If you disagree and have found some amazing ostomy underwear please share. I would love to find out where others have purchased from.

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Apology to all bag wearers


Following on from my blog post last week when I flew into a terrifying rage after members of a very naive US police department declared to the entire world that having an ostomy or colostomy was pretty much a ‘fate worse than death’, and that teenaged boys who wore bags (for any reason at all) would never get girlfriends as the bag made then untouchable and disgusting. (Click here for previous post), Cincinnati Police have rightly apologised for their ill-thought-out campaign.

The campaign sparked outrage amongst the ostomy community. Many felt betrayed and let down. I know I did.  While the idea behind the campaign was good (to try to protect youngsters from gun crime) it painted the very idea of having an ostomy bag as a thing of revulsion, something that made the wearer an outcast and an unattractive person in the eyes of society. Many people felt the same way that I did, that this campaign was re-enforcing young people’s prejudices and fears about life with an ostomy bag…and that young boys already found it hard enough to accept living with a bag without their city’s police telling their community that their life saving operation now made them the least dateable teenager in America.

I want to say thank you to everyone who wrote in to this police department and made them aware of the upset they had caused. I accept, and I hope others do to, that they were blind to the fact that they would be causing so much offence and pain among a community of people who, quite frankly, have already been through enough pain and worry in their lives.

This apology marks a victory for all of us, whether you have a bag or are facing possible surgery in the future. Through reactions to this campaign and the media coverage that surrounded it we have shown the world that having an ostomy is not  ‘a fate worse than death’, it is something that changes your life for the better. The word ostomy shouldn’t be associated with revulsion, disgust or fear, but with hope, happiness and most of all FREEDOM.

Thank you to the Police Chief for issuing this very public apology and for realising his force’s mistake. We all understood the idea behind the campaign and the very noble thing they were trying to achieve. What still frightens me is that this made it to the press at all. That this sort of campaign was ever signed off, having made it past dozens if not hundreds of different departments before being handed to the media is nothing short of concerning.

Thank you for the apology CPD, but I fear that the damage may have already been done.

Cincinanti police department cpd ostomy offense stephanie hughes stolen colon colostomy crohns ostomy colitis blog

To the Ostomy Community:

 Like many American cities, Cincinnati has seen an increase in the number of juveniles involved in violent crime.  Many of these juveniles become victims and suffer traumatic injuries as a result.  In developing a strategy we contacted a local hospital trauma center which has a presentation that illustrates some life changing consequences of gun violence.  Unfortunately, one of the examples used was of a gunshot victim who was now required to utilize a colostomy bag; and the news chose to highlight a poorly chosen comment by a Police Lieutenant when airing the story.  To use the example of an ostomy bag in this way was a mistake.  Although there was no ill will intended, the results were hurtful to some in the ostomy community and this will not be repeated.

 I realize the way the news story was presented has offended many in the ostomy community, and for this I am truly sorry.  As a result of the numerous contacts I received, I have taken steps to ensure this does not happen again.  I have spoken to the Lieutenant involved in the story and his commander.  Both are extremely troubled that such a well-meaning attempt to reduce the number of juveniles involved in gun violence offended so many.  I addressed this with my command staff and Public Information Office to ensure we are all educated on the issue and to prevent any future occurrences.  I also contacted Mr. Jeff Brogan, General Manager of WCPO regarding this issue. 

 I have attempted to individually answer emails, but I wanted to send a clearer message to everyone in the ostomy community.  I am very sorry this happened and will work to ensure it does not happen in the future.  I assure you this was a mistake on the part of well-meaning individuals and not a deliberate attempt to offend anyone. 

 I hope you will accept this apology on behalf of the Cincinnati Police Department.

 Sincerely,

Paul H. Humphries
Interim Police Chief
Cincinnati Police Department

Adventure holiday drama and a very unexpected birthday present


I’m back in one piece!! I know it’s a miracle but I have officially made it home from my

Caution squirrels me and Winnie are loose

Caution squirrels me and Winnie are loose

girly adventure holiday without any injuries, scrapes or even bumps. Even Winnie, despite threatening to kick off constantly, was extremely well-behaved and didn’t even kick off when I managed to swallow a few pieces of sweetcorn by mistake while trying to fish them all out of a very ill-chosen salad.

Ok, so maybe that’s not true…let’s just say that’s what I would have liked to have written at the start of this blog. What I’m missing out is that me and my friends raced back from our trip to Centre Parcs after two rather frightening metal looking hoops burst through the opening of my fistula, causing me to suffer a major breakdown and sway in and out of consciousness as I tried determine what weird and wonderful surgical piece of equipment the surgeons had left in my body was trying to break its way out by bursting out of my skin.

ME in A&E unhappily waiting to find out what is sticking out of fistula

ME in A&E unhappily waiting to find out what is sticking out of fistula

The trip – which had been filled with fun, laughter, adventure and gossip, and seen me sweating like a pig as I furiously pedaled up steep hills determined to get to the top despite my ostomy bag hitting my legs (my bike was a little too small) and shouting back at my mate who had given up and got off to walk “beaten by a post-op patient” (which I’ve just realised made me sound like I’d just had sex change surgery) – ended with me dressed in a rather trendy hospital gown, demanding IV paracetamol and shaking with fright and pain as I was systematically ignored by everyone in A&E despite the very real fear that whatever the ‘wires’ were could have perforated my remaining (and potentially healthy) bowel.

It actually took four hours for anyone to ask to look at my abdomen, and when they did they could see exactly what I had been trying to tell them for the past few hours (in between falling in and out of consciousness) – and they quickly admitted I did indeed have some sort of foreign object sticking out of my stomach. I felt like saying NEVER!!! In fact the nervous junior doctor who eventually plucked-up enough courage to ask me to lift up my gown (ohh la la) and take a look, struggled to see the metal glinting under my fistula bag, but when he did see it he seemed shocked, before admitting he “didn’t know what he was doing” (a worrying yet refreshingly honest attitude) and ambling off to get someone else who I trusted and recognised to have a good poke around.

So after four hours of stressing out, pain and worrying in A&E, the surgical nurse at last

EWH very red skin and you can just about see the loop at the bottom of the pic

EWH very red skin and you can just about see the loop at the bottom of the pic

took to my stomach with a pair of scissors and snipped away at the loops (which had got even bigger in the time I had been waiting). This was uncomfortable, but by no means painful, but I am ashamed to admit that I caused a bit of a fuss, firstly, rather childishly telling him NOT TO TOUCH ME, but then, after a reassuring explanation that he wasn’t about to pull meters of this stuff out of my body, I gave in , screwed up my eyes and let him get to work trimming my wires! It took him the whole of five seconds, and when they were taken out I took a look at what he had removed, and they were really long pieces of plastic – no wonder I had been in so much pain.

Anyway to get the record straight I had it explained to me that this was not a surgical error, I was not seeing bits of plastic the surgeons had absent-mindedly left in my body following the operation as they rushed to get to the pub on time. These were stitches which had been used to pin down my remaining colon (or rectal stump) which broke away months ago as my colon went crashing through my stomach wall (creating Oscar) and had been trying to work their way out of my body for God knows how long. The stitches were meant to dissolve naturally but, well, had been being stubborn and had decided not to! Instead, my body’s typically dramatic fashion, they decided to burst out of stomach, causing me to dissolve into a blithering wreck of panic as my mind tried to comprehend the possibility of further surgery.

She's got wires coming out of her skin

Well it seems this is all fairly normal following a massive operation like this, but how was I to know that? No one had warned me this might happen. Just like no one warned me that my stitches might burst sending mucus gushing out of my stomach. No one warned me, so when I woke up that morning and spotted the very sturdy and alien loops protruding out of my fistula I thought something had gone massively wrong and that I was going to die! So it was panic stations all round….all I can say is it is a good job we were leaving Centre Parcs that day and this ridiculous complication didn’t cut our girly holiday short.

Just a shame it had to happen on one of my best friend’s birthdays.

Picture this…you’re having a lovely lie in on the morning of your birthday. So far you have had a fun but exhausting weekend, raft building, cycling and playing board games. And last night you spent playing shrades and opening presents from your friends in the chalet in the middle of the forest, before tumbling into bed in the early hours of the morning. Next thing you know a crazy-haired person dressed in a towel shakes you from your sleep, tears pouring down her face, saying “something’s wrong, something’s wrong”. Before proceeding to flash her boobs at you, while showing you a red raw surgery scar and a fistula, making you peer into the gooey mess to confirm there is indeed part of a builders work yard sticking out of her stomach, and that she isn’t going insane – NOT THE BEST BIRTHDAY PRESENT I’VE EVER GIVEN SOMEONE.

Hats off to my friend, she stayed incredibly calm. She even managed to calm me down

Measuring myself at Centre Parcs

Measuring myself at Centre Parcs

enough to ring everyone that needed ringing (hospital, boyfriend, parents etc) and get the whole chalet packed up and ready to go. Before I told her I remember standing in the bathroom on the verge of a complete emotional breakdown trying to figure out what to do. I needed help, but who to ask. I didn’t want to wake her as it was her birthday, but the other person I thought of telling was all the way upstairs and I didn’t know her as well as I did my best friend. I honestly considered not saying anything, until I mistakenly knocked the wires as I pulled up the towel sending shooting pain through my abdomen and almost knocking myself to the ground as pain and nausea took over.

The journey home was a mishmash of memories, laughter and trying not to fall asleep. I was, and I think the people in the car were too, totally petrified that this could be something serious. I was honestly thanking my lucky stars that I had enjoyed myself, cycling, gossiping and even drinking a few glasses of wine, before I would be imprisoned back in the hospital. During the car journey back I had to stop myself from blubbering and shouting as the very real possibility that I would once again be back under the surgeon’s knife and confined to a hospital bed for another month or so flashed into my mind. I tried not to let it show (but I think it was totally obvious) that I was totally petrified.

Today I feel exhausted yet happy. Home from A&E and unpacked from my trip all I can think is how lucky I was to have someone so calm to help me in my moment of need. Just the day before one of our other friends had managed to miss a step in the apartment and sprain her ankle – this was after avoiding any injury whatsoever whilst swimming through a lake filled with waist-high weeds while trying to beat a family to build and race the best raft – and she, once again, was a picture of calm amongst chaos and confusion.

I just hope I didn’t ruin her birthday, but, I guess, it’s not one she’s ever likely to forget.

The girls raft building

The girls raft building

The holiday itself was just what I needed. Ok, it was a bit of an emotional roller coaster for me, seeing me squealing with excitement as we got nearer the holiday resort in the car, then sobbing in the supermarket as the pain and fatigue from the car journey kicked-in, then excitedly racing around the forest on my bike before having a nervous break-down in the bathroom of a restaurant as my crab salad reappeared in the toilet bowl, appearing to multiply in the process. I’m not entirely sure why I felt so happy one minute and then so gutted and down-in-the-dumps the next. I think I found it hard to stand and watch while the others swam, went on water slides and raced around building rafts while I sat at the side holding keys and inhalers and proudly taking photos like a mum waiting for her kids at Alton Towers. I think it upset me that I couldn’t fully join in with the activities due to my never-ending open wound and fistula, which I was told by the surgeon that I mustn’t submerge in water. I think I was envious of the swimming costumes and bikinis and the never-ending bottom-less stomachs of my mates, who seemed to be able to eat and eat and eat, unlike myself who was sick the moment I ate more than two marshmallows after tea.

First day...drying feet after not going in the pool!!!

First day…drying feet after not going in the pool!!!

I’m painting a negative image of this aren’t I…I’m just trying to be honest. But these moments where fleeting compared to how happy I felt for the majority of the trip. I loved the feeling of total freedom as I free wheeled down steep hills ringing my bell to get pedestrians to move out-of-the-way, dressing in our onsies and playing board games into the early hours of the morning, and simply being around other people and having a truly amazing time while not feeling like ‘the ill person’ all the time.

I do think, however, that I need to go back to work pretty sharpish. At the moment all I have to talk about is me and Winnie… which I’m sure is fine for a little while, but no doubt it has to get boring pretty quickly.

Oh, and did I mention I wore a ONSIE in front of everyone!!! So that’s another challenge done and dusted!!! It was the comfiest thing ever, however a warning to everyone, DO NOT FALL ASLEEP IN ONE, you will boil to death!!!

In our onsies - challenge complete

In our onsies – challenge complete

Here’s Winnie – meet my temperamental stoma


Yesterday me and Winnie celebrated our 10-week anniversary. But, because all I remember about the day the surgeons ripped my once flat stoma open and tore my poor and battle worn colon out, is being dopey and drugged up and feeling the sort of pain and soreness that you would expect a person to feel when a major organ has been ripped out of their body, I tend to think of the day after the op as the first real day me and Winnie spent together.

So true!!!

So true!!!

A lot has happened since I woke up groggy from the massive dose of anesthetic and realised that my worst fear had finally come true – my once flat stomach had been torn apart and a giant pink stoma was now erupting from the surface. Me and Winnie have been on a lot of adventures together, faced horrible challenges, snuggled up in sweat pants with hot coco when we’ve not been feeling well, and have had some God awful ‘I hate you so much’ fallings out.

I’ve struggled to accept her need to constantly make embarrassing farmyard noises in totally inappropriate situations, while she has put up with my inability to stay away from foods that make her sick (I promise you not matter how much you hate it, I will always eat loads of spinach, even though you spit it out whole). I’ve put up with her non-stop attention seeking and ability to fill-up faster than the speed of life, while she has struggled to keep up with my stubbornness and inability to put my feet up and just rest.

We go together like Brie and Bacon

We go together like Brie and Bacon

We have had our highs and lows. Ok, more lows than highs at the moment, but just like any long-lasting relationship at first you have to learn to put up with each other. After living for 25-years with my colon, I now have had to get used to life without one of my major organs and accept Winnie as an alternative to using my arse to go to the loo 🙂 it has been a major learning curve, but one I have got used to and accepted a lot quicker than I ever thought I would.

Now that 10 weeks have passed I thought it was about time that I showed you Winnie. I mean I’ve been telling you all about her, praising her and bitching about her for the past two months, and I, very rudely, have never introduced you to her. Now to everyone who said they wouldn’t read my blog if there was anything gross in it, I apologise, but even though she sometimes (well a lot of the time) does gross things, Winnie is NOT gross…she is totally natural, and I would still be seriously ill without her. So here she is. My surgeon and stoma nurse say she is perfectly formed, and she is 🙂 n.t I’m sorry about all the scars and how yucky they look, but if I wait for them to heal without showing you Winnie we could be waiting for years!

So here you can see Winne, Oscar (who is poking out of my stomach and causing me all sorts of problems at the moment) is the one who looks a little like a second belly button or  thumb print, and Felicity the fistula. You can also see my very itchy scar from the operation, surrounding my almost non-existent belly button, which has been swamped by the itchy rashes caused by plasters, adhesives and dressings. I thought I would always hate this scar, and at the moment I do, but I know that I will grow to accept it in the end – well hopefully.

Winnie the very temperamental stoma, released for good behaviour for a minute or two

Winnie the very temperamental stoma, released for good behaviour for a minute or two

Winnie is pink, problematic, has a split personality disorder, and is 25mm big (which is a hell of a lot smaller than she was when she first came into this world). We have days where we hate each other, but you know what she has saved my life, and she is a small price to pay for a life without the crippling pain of Crohn’s Disease.

I didn’t show you Winnie before because I was scared to. It sounds silly now but I have been dreading this post, and even though I wouldn’t want to admit it I was putting it off. But now I have show you her I can’t understand why I was making such a big ho ha about it. So, say hi to Winnie world!

As you all know, before I was forced to have my emergency ileostomy op I was scared, well shitless, about the idea of having anyone go near me with a sharp knife to slit open my poor skin – I won’t go into how terrified I was about the idea of having a stoma, or we could be here all night! I guess I never thought I would be sat here showing the whole world a picture of her, I didn’t think I would even be able to look at her. 

And here she is looking very sore from the hot weather :( I'm sorry Winnie - not her best look

And here she is looking very sore from the hot weather 😦 I’m sorry Winnie – not her best look

Despite the fact I had narrowly avoided having the surgery many times before, in the days before my operation 10-weeks-ago I may have accepted the idea of having an ileostomy bag but, I have to admit, I was still bloody terrified about having a stoma. After drawing those little x-marks-the-spot marks on my then flat and untouched stomach, and chatting to me about sizes of bags, accessories and all the other fun things that as a fashion mad lady I would usually love to hear and chat about (not in this situation tho), my lovely stoma nurse Maria gave me a pre-ostomy reading and prep pack.

This was just two days before the surgery, so there was no backing out. The slot was booked, the surgeons prepped, and my bowel was rapidly disintigrating…so, really there was no backing out of it. So I opened the pre-op pack and started devouring the literature in an attempt to get myself ready for my new arrival. All the shiny coated booklets where filled with images of happy smily people drinking coffee and taking bike rides in the sun and they were eating all the time! I mean, what’s with all the eating? Nearly every page was filled with images of either shiny-grey-haired pensioners laughing over orange juice and croissants, or smiling families tucking into picnics on sunny lawns…all the booklets seemed to be telling me is YOU CAN EAT ANYTHING WITH AN ILEOSTOMY!! And that really wasn’t the reassuring message I needed….it all seemed really over-glossy and fake, I needed something real, a picture of someone who was just, well like me.

My stomach the night before my operation - wish i had never taken this it makes me feel sad to look at

My stomach the night before my operation – wish i had never taken this it makes me feel sad to look at

What I needed was maybe an extract from someone’s blog, the real truth about how someone my age would feel after such a major operation, you know WHARTS AND ALL! I think if I could have read something honest, someone who said they had also felt really frightened, and that it hadn’t been all plain sailing with their ostomy but that it had been worth it in the end, that would have been a great help… so if you’re reading this and you’re from one of the pharmaceutical companies please, please, please think about putting in some honest stories from young people, instead of just filling those brochures with fake, plastered on smiles which wouldn’t look out-of-place in a pension or life insurance commercial.

Me with all my gadgets - my utility belt :)

Me with all my gadgets – my utility belt 🙂

Anyway, anyway, anyway, inside this pack there was a fake stoma and a bag, so that you could basically give-it-a-go, sort of try it on before you buy kind of thing. It wasn’t an enjoyable experience but I attached the fake squigy foam stoma to my marker x, filled up the bag with water from the communal tap on the ward, and attached it to my stomach. Then, according to the booklet, I was meant to walk around with the bag attached to me for a couple of hours to get used to the feeling of wearing it all the time, but it was just too heavy and uncomfortable, and the first time I emptied it, it made me feel so emotional that I started to cry as the water gushed from my stomach. So I took it off…I just didn’t want to have to deal with it until after the operation, when I guess I wouldn’t have a choice.

Cutting all my new manuka honey bags :) thanks Charter :)

Cutting all my new manuka honey bags 🙂 thanks Charter 🙂

What was worse than that was I had realised that I didn’t think I would be able to deal with touching and changing my stoma myself. I was really worried that I wouldn’t be capable of it, that for the rest of my life a nurse or a friend would have to deal with her. This was because when I was reading the literature I couldn’t look at the picture of the stoma…to me it looked pink, gross and slimy. A bit like a willy or worm sticking grossly out of someone’s stomach..and this one was a perfectly formed, no stitches, no poop, no blood stoma, so how was I going to be able to deal with mine post surgery? I did, but that is a different story, for now I want to tell you that I put my hand over that horrible picture and wouldn’t look at it even when my nurses tried to get me to.

I even took a picture (see above) of my stomach the night before the operation. I guess it was a souvenir picture so that I could always remember what my stomach looked like before the scars and the stoma. You know, something to show the grandkids and all that. I wish I had never taken it, and have deleted it off my phone, as I was spending too much time looking at it and feeling sad.

But now, as I show you this picture I know that I am 100% fine about having a stoma. I feel fine about the idea of having Winnie for the rest of my life. I mean, if that means a life without the crippling pain of Crohns, the constant toilet visits and the inability to follow my dreams, or even nip to the shops for fear of having an accident, having a little pink lump on my stomach that occasionally farts in public is a small price to pay.