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Why I love my stoma……

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Ok so the truth is I don’t always love it but most of the time I do. It’s a hard thing to believe, after all who in their right mind could love something that is essentially a bag of poo stuck to their belly? But for me, like a lot of other people it saved my life.

For some people, a stoma comes as a shock, it is the result of a freak accident, a sudden diagnosis of IBD or perhaps cancer. Sometimes (and not in all cases) the stoma is unwanted and incredibly difficult to come to terms with. But I consider myself lucky. My stoma ended years of suffering, illness, fatigue, hospital admissions, strong medications and embarrassing accidents to name a few. Nobody, no matter how sick, would wish or want to have a stoma, wearing a bag is the last chance saloon, something that perhaps you see as a possibility in the future but not something inevitable that will come at you in your prime. The truth is, we never really know what is round the corner or what fate awaits us.

This time 3 years ago, I was very sick, you wouldn’t know as I still worked full time in a stressful and full on job, had a social life and to the outside seemed normal. What people didn’t realize was that I was consumed with a mouth constantly full of ulcers, it hurt to eat even ice cream, I couldn’t even contemplate taking on the day unless I was stuffed with as many painkillers as I could take and just getting through the day would muster every ounce of strength I had. I would plaster a smile on my face, wear my high heels and then cry in secret when I took a painful bite of one of the only things I could bear to eat (banana),only for seconds to pass before an emergency dash to the toilet to expel what little was left inside me. I was constantly starving, I was so hungry I would cry and yet just the smallest morsel would send me into spasms of pain and hours on the toilet. But even then, the thought of a stoma terrified me, in fact I didn’t really know anything about the ‘bag’ (3 years ago there wasn’t the positive publicity we now see) I assumed it would be like a hospital drip where you had to carry it around with you on a pole on wheels!! So when I was told I would be receiving infliximab by the Gastro Doc I was over the moon. Infliximab is so strong and powerful with so many potential side effects that you have to have tests for TB, Hepatitis and a myriad of potential underlying diseases before it will be administered. I was told there would be an 80% chance of not needing surgery. So when days later I was told surgery was my only option I was distraught. How could I wear a bag, it would be awful.

However, by the time the surgeons came to see me I was in so much agony I distinctly remember saying to them “I don’t care just get the f***er out”! Eventually I awoke from Emergency surgery with two bags (one was a mucous fistula, more of that in later posts) but instantly felt better. I was in agony from the op but could tell that my ravaged, poisoned intestine had gone! It was days before I was allowed to eat properly again, which was torture but when I could it was absolute heaven!

So why do I love my stoma?

1) I can eat anything I want without fear of mad loo dashes, except sweetcorn, it’s the devil for me, I love it but it’s a small sacrifice (missing the large intestine means certain foods can be more difficult to digest and can cause issues but it’s all individual).

2) I can exercise again – ok not so much of a love as I don’t really like exercise but there’s no excuses and the sky’s limit if I want!

3) I can wear white and whatever else I like (yes with the aid of some amazing albeit expensive knickers!) but I can still wear those things. I mean who would wear white if the fear of sh*****g yourself was always at the back of your mind?!

4) I can have a relationship, yes you can date with a stoma, it doesn’t seem to put people off. But the best thing is no longer (as happened to me) having a date over for dinner, excusing yourself to use the loo only appearing half hour later, pale and weary! Emptying the bag takes seconds so no embarrassing ‘you’ve been a while’ moments.

5) I don’t have to find a nice toilet to poo in! Obviously nice toilets are a bonus, but it’s not like having a poo, where (especially us ladies) would rather do in private and comfort, but a practical task, that can be done almost anywhere. Oh, and no more waiting until I’m home to poo, nope it’s on the go now!

6) Travelling – I can travel, on planes, trains and automobiles! No worries of being on a plane, feeling an urge to go and yet seeing a dreaded queue. As yet, I have not had to empty on a train toilet and I hope I don’t have to, but I still could, no fear about being stuck in a god-awful train toilet for ages and risk missing my stop! Before travelling I make sure I empty, eat light before hand, take a couple of Imodium and away I go!

7) I am free of medication, fatigue and pain which is just amazing. Ok, so occasionally I don’t chew properly or I eat something that’s difficult to digest and I may get a ‘blockage’ which is painful but manageable yet it’s still better than before.

There are several more reasons but I realize I’ve chatted enough so maybe I’ll leave you wanting more! 😉

But as I said, I am lucky, suffering for so long made me appreciate my stoma. But if anyone is facing a similar situation, it isn’t all bad and you can have fun with it (yep you can, but more on that later!)

So I love my stoma, really for the freedom it gave me and the fact I can now enjoy life – which is really the important thing 🙂

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Hooray, hooray it’s a happy holiday……

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So I am off on holiday, I am very excited as hopefully you will remember from my previous posts how much I love holidays!

But before I talk about this I must first celebrate my success! Yes, I did it, I completed the Bupa 10K run in London on Sunday! I was so chuffed, I got round in 1 hour 8 minutes which was ok for my first one, I also managed to run the whole thing (no walking!) although I did have to stop 500 metres from the finish line to throw up a little bit – but I carried on and made it through! I also cried when I got to the Marquee where all the others were, I could feel myself welling up as I crossed the finish line but I held it back until I saw Mike and the Beating Bowel Cancer team! It doesn’t take much for me to cry at the best of times but I think this was just such a huge mental achievement after the last few years that all the emotion came out! In April last year I was sat in the Surgeons office and I was given the all clear, but I was also feeling fat and unfit and never dreamed I could run 1km let alone 10km – so I am really proud and showing everyone who is facing something similar that you can overcome your obstacles! Everyone was so generous and supportive, we managed to raise £1010 in sponsorship money for Beating Bowel Cancer which is amazing and will really help to raise awareness and save lives. Thank you to everyone who has sponsored or supported us.

Once the run was over it was time to get into holiday mode, starting with a celebratory bottle (or 2!) of champagne that afternoon/evening and then on the Monday, Mike and I had a lovely two hour spa experience booked complete with full body massage, it was bliss and well needed. I nearly didn’t make it due to the champagne hangover but I soldiered on. A lot of people with Stoma’s worry about things like swimming and spas but really it is ok and no-one needs to know you have it.  Massages are fine and just the same as before and as for swimming and the spa – well those gorgeous high waisted bikinis come in handy again (I still can’t stop buying them).  I have to say, that I think my sister may have needed the spa more having just completed a 100km walk (yes you read that right, 100km!) with her boyfriend that weekend. They did theirs for National Rheumatoid Arthritis Association as Leanne has Rheumatoid Arthritis unfortunately, so hats off to both them but especially my fabulous sis who also has her own battles to overcome. So we have both done our bit for charity, and if you notice a gorgeous blonde walking wonky alongside a limping man then you know it is only Leanne & her boyfriend still recovering from their walk!

I really should have blogged twice these past couple of weeks as so much has been going on but it’s also been difficult trying to fit it all in (I am BZ remember?!) so I will try not to talk for pages and pages but I have a glass of bubbly in hand as I type (I am officially on holiday) so I may chat lots.

So, back to the holiday – woo hoo, I am off to Turkey tomorrow for two whole weeks with Mike, I cannot wait, it has come at exactly the right time too, after the run and with lots of great stuff happening at work, it is really time to chill and recharge. We are going all inclusive and to a hotel with lots of entertainment. We both love it, you’ve got to have a bit of the ‘Benidorm’ on holiday and evening bingo and stage shows are where it’s at 😉 We also love the daytime activities, well Mike does, the activity I like is choosing which cocktail to have and turning over on my sun lounger. Mike joins in everything, so we don’t see much of each other during the day, we reconvene at lunch and when I am demanding a drink from the bar but we both have fun! We are both very similar on holiday and like pretty much the same stuff which is great, makes it much easier. I have had a boyfriend before who liked to do ‘trips’, I can’t think of anything worse than being stuck on a coach for the best part of a sunny day trying to find culture in Mallorca, so when forced to compromise (it’s good for relationships apparently) I am not the happiest – cue arguments and tantrums. So to have a relationship where we both enjoy the same is great.

A quick bit on holidays with a stoma – you can still go on holiday and enjoy it the same and do all the same activities you would as before, I find my stoma behaves on holiday (i.e. not too active, knows when to be quiet), I don’t know if this is because of the heat, being relaxed or a combination, but because of this I feel it is my destiny to holiday as a full time job! The only difference with holidaying with a stoma is the amount of supplies you have to take. You must make sure you have absolutely enough of everything and extras ‘just in case’ and take it all in hand luggage in case your suitcase goes missing. The advantage to this however, is being able to have extra hand luggage allowance due to a medical condition so I am able to use my carry on to stash a few extra clothes too! Of course I am also being cautious, making sure I have something to change into in case of a leak but it is also handy to stash a few bits to get me through a couple of days, so in the terrifying event my case goes missing I don’t have to parade around in an ‘I love Turkey’ T-shirt and a Speedo swimsuit!

What I would like to know is if there is anyone out there who has actually mastered the art of packing light? We all read about it in magazines and how one sarong can magically be dressed three ways (although why would I wear my sarong round the pool then drape it artfully around my neck come the evening, I would be so paranoid a boob would pop out) and how you only need a white shirt and a pair of shorts and you have a weeks worth of outfits, but has anyone actually done this? Isn’t part of the ritual of going on holiday to take too many clothes and shoes in the event we may just want to wear it and to come home having worn barely half, saying ‘I took too much, I can definitely pack light next year’……

So I am signing off, ready for the stress of the outward journey, only to relax once through customs with a Duty Free carrier bag full of purchases I don’t need and a glass of bubbly in hand as I am ‘officially on holiday, again’ (besides there are no time zones at airports or on planes so bottoms up!).

See you in a couple of weeks all! J

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Holiday Blues

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I can’t believe it’s been two weeks since my last blog, where does the time go? But I have been a little busy, mainly with running in prep for my Bupa 10K next weekend but also with a girl’s weekend away.

I love holidays, they are my favourite thing in the world, even a little one night break counts as a holiday in my book, in fact I might not bother working if it wasn’t for the fact I need to pay for holidays! 😉 When I was ill I didn’t get a holiday for a couple of years, not even a mini-break, well that’s a lie – I did get two summer breaks courtesy of the NHS, even food was included! My sister and I also had a ‘staycation’ too which was amazing and sort of counts as a holiday, despite being on home turf. Holidays with a Stoma can be a cause of concern for some people, but I can tell you that it is absolutely no problem, in fact everything happens the same, you just have to remember to pack enough supplies and then spares and then spares for the spares…..but it’s all good. I will talk more about holidays and the Stoma but that is for another day.

So, back to the holidays, yes I love them but I also get horrific, indescribable, miserable post-holiday blues. I always have done, right from my first holiday abroad with my best friend Lisa, we went to Corfu, I fell in ‘love’ with a Greek barman (has to be done) and decided that I would go back out there to work the following season, I didn’t, we went on holiday to Turkey instead and I fell in ‘love’ with the Turkish entertainer! Upon arriving home, our mum’s were eagerly (that’s mine and Lisa’s, not the Turkish entertainer’s) waiting our arrival and I burst into tears stating I didn’t want to come home. Eventually I decided I couldn’t keep getting the blues like this so did a season abroad for Thomson as an entertainer, my summer of 1999 was spent in Cyprus – where you guessed it, I fell in love with the Cypriot porter!! Coming home this time was even worse, Lisa and her mum picked me up from the airport at the end of season and all I did was cry all the way home, mind you it didn’t help that Lisa had picked up a CD for the Journey called ‘Best Movie Power Ballads’ (or something like that). You get the picture, I go on holiday, fall in ‘love’ with a local and then get the blues. Fortunately, my last few holidays have been with Mike, so there has been no falling in love (much to his relief), except for maybe with my own reflection in the shiny cocktail glass!

I mentioned a girls weekend, well the weekend just gone, myself, my sister Leanne and 3 of our friends (Vicky, Lisa, Jo and Kelly, they all deserve a mention) all went to Butlins. And I don’t mean Butlins of the ‘take your kids for a family holiday’ variety, I am talking the adults weekender. This one was an 80’s themed affair, we went in September for a 90’s style one (S Club Party anyone?) and it was so good we had to instantly book for our next one. The weekend is just so much fun, responsibilities are left on your doorstep and all that ensues is 3 days of fun, alcohol, dancing and dressing up. We dressed up every night in something different, the Sunday we did pyjamas, all I can say is it is very liberating & very comfortable to go out in pyjamas and your feet appreciate the slippers! So it’s a great weekend, with a pool party, a fun fair and lots of great girlie times. My sister is amazing at organising girls nights and weekends and she had got us personalised totes made with lots of goodies and t-shirts inside plus loads of games to play before our nights out, so there wasn’t an unfilled moment in the whole weekend!

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Weekends like this would have been a worry for me with my illness, but now with a Stoma it is easy. Everyone knows I have one (and probably a few people at Butlins now know!) so I don’t have to worry about sharing rooms or anything, and I can wear anything I like and go swimming and enjoy myself and generally have a good time. So a Stoma isn’t so bad.

You can probably guess that I am now suffering with the post-holiday blues or post-Butlins blues, we all are, we’ve had so much fun and then it’s back to reality. We all want to go again, we keep saying this time last week…..we all want to go to the pool party, we don’t want to be at home and working when we could be having so much fun! Still, it is not so bad for me as I go on holiday again in two weeks, I can’t wait. I won’t be falling in love with any locals but I can guarantee I will have a severe case of the blues upon return and may be a nightmare to live with.

Still I guess I will just have to book the next Butlins weekend to give me (and the girls) something to look forward to!

By the way, if you fancy sponsoring my 10K you can do so here! 🙂 http://www.justgiving.com/Sherrill-Hawker

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Time to go shopping!!

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When I was first told I would need a stoma I cried, yes a little bit of it was because I was worried and nervous, but the main reason I was so sad was because I had just been shopping to Bluewater and thought of those lovely clothes that may never see the light of day!! There are parts of my hospital stays which are blurry, but I definitely remember saying, through a barrage of tears “but I, I, I.have just been shoooppping” – cue more tears. I think probably most women will understand this, it is such an important and necessary part of our lives. Shopping is to us what football is to men, unfortunately we don’t have regular 90 minute programmes about it which is of course why we must therefore, shop in person regularly instead. As it turns out the stoma didn’t stop me wearing any of the clothes I bought, it was only the cropped tops that had to go (only joking, I haven’t worn a crop top since I was about 20!!). It was a lovely excuse to go out and buy more clothes that were suitable for my recovery, then there was the ‘I am fully recovered celebration’ shopping spree, the ‘I am going on holiday’ shopping spree…you get the picture. 

I am very fortunate that in my life I have two wonderful people who positively encourage my shopping. One is my mum, sometimes referred to by my sister (who is also wonderful but that will always go without saying) and me as ‘Bank of Mum’. Oh it is so wonderful and envied by many, we go shopping with mum and she says to us to “put in on my credit card as it won’t need paying for x amount of time” (usually a good payday away). We question an item and what colour should we get it in to which we hear the joyous cries of ‘get it in both you can put it on my credit card’. Yes it is wonderful and fantastic for the wardrobe, not so wonderful when payday actually comes around and you have to pay for the 2 tops in 2 different colours you are now bored of! Mum taught my sister and I well in the art of shopping, perhaps she could have better prepared us by teaching us the art of buying property, but as mum says “when the going gets tough, the tough go shopping”!

The other wondrous shopping companion is Mike, also handy with his credit card (I even get away without paying it back – crafty) but what is more fabulous is his love of high heels (not on himself and not in weird foot fetish way, well not that I know of!) and his surprise that us girls can get them at such bargain prices. He also positively encourages my shopping and doesn’t bat an eyelid when I proclaim that I must have a new dress, he just tells me to do it – isn’t that fantastic?

My latest obsession (apart from dresses and high heels) is bikinis and swimsuits, River Island do an amazing range and I can’t keep away. Great for us girls with a stoma, now just because you have a stoma doesn’t mean you can’t wear ‘normal’ bikinis, I am not ashamed of my stoma and am happy to have it in the open. However, on holiday, when swimming and sunbathing, I just feel more secure with a high waisted bikini or a cut out swimsuit. I love the swimsuits that look like a bikini from the back but cover the tummy and I am so glad all the high waist clothing is in fashion. Trouble is I have enough swimwear to last me a month’s holiday but I still can’t stop buying it every time I see a new suitable garment, always coupled with the excuse that ‘I should get it whilst I see it’ (a mummyism). 

Despite the fact that mum and Mike make good shopping companions, I love a good shop with my sister, this is usually because a shopping trip ends up with cocktails in a bar. Unfortunately we get more reckless – not with the shopping (isn’t tipsy shopping great?) it’s usually the fact that we are surrounded by bags that we decide a few extra pounds on extravagant cocktails and ‘oh we may as well just get the champagne, it’s no more expensive’ can be justified, as after all it won’t make much difference to the overall spending!

Of course none of this is great for my bank balance or my bulging wardrobes, but who cares, shopping it is too much fun to stop. So I must sign off as I have a code for free next day delivery and I have seen a dress I really need…..

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