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.

 

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.

 

 

 

 

 

Being home after stoma surgery – it takes some getting used to!

I’ve finally come home, but it all still feels a little bit strange. The quietness is eerie; I’ve gone from a world of bleeping machines, screaming and constant chatter, to an alien land where there can literally be no noise for hours. And when there is I can more or less control it.

I’ve been home for two days now and I still can’t really believe I’ve escaped hospital. Yesterday morning I woke up and had a scary few seconds where I didn’t know where I was. To say I was confused was an understatement. I expected to wake up to a shake from a tired looking nurse prodding me awake to test my BP and temperature, instead I woke up clutching my teddy in my beautiful butterfly decorated room to the sound of birds singing. Yes I was in pain, but it was blissful to be in my own bed and not to be forcefully woken and thrown out of bed and made to perch on an oversized chair in my nightie.

Nothing compares to being in your own bed. Out of everything I have longed for during my endless weeks in hospital over the past 13 years it has always been my bed. To me it is the symbol of freedom, comfort and security, and when I’m in a hospital bed with just a flimsy sheet to cover me at night I feel vulnerable and anxious. On the first night I got home my duvet was so heavy it almost hurt. I’m struggling to lift the weight of it and having to get my boyfriend to literally tuck me in at night, teddy and all. But once I’m under there I feel snug as a bug, safe and secure. And what’s even better I know (well hopefully) I won’t be woken in a few hours by someone screaming bloody murder or being sick or to check my vitals for the 10th time.

I’m not sleeping through the night, which is understandable when your used to being woken every couple of hours through screaming, pain and sleeping in a room full of strangers. I feel safe, apart from the cute ‘I love you balloon’ that scared me half to death by making a weird rustling sound as it scraped across the ceiling, embarrassingly I had to get Andy to come and take it into a different room. But its lovely to know my boyfriend is in the room next door and a trip to the bathroom doesn’t involve traipsing down a corridor and risking falling over rows of stinking bed pans.

Ok everything isn’t perfect. I’ve still got my drain in which is becoming a little tiresome and sore. I’m struggling to wear trousers (even my trakkies) over the tube and bag, and my scar, while extremely neat and surprisingly faint, sends spasms through my abdomen when I try to sit up and down. I’m tired, starting to feel bored and long to get my fitness back up so I can at least walk to town. But I love snuggling up on the sofa with my boyfriend, spending time with my parents and being able to sort of do what I want, without everything being scheduled by a nursing team.

But you can’t run before you can walk, and compared to my last operation my progress is staggering. Today I managed to get into the shower on my own (with the help of a little step), I’m able to eat a little more and make my own juice (it’s the little things). I’m shaky but managing steps and sitting down is starting to feel a little less someone is trying to stick a red-hot poker up my arse – which is never a pleasant feeling!

Yesterday the district nurse came. We (that’s me, mum and dad) waited around all day for her to come, before I found out my doctors hadn’t told them I was under their care. Typical. But when she finally arrived she quickly flushed my pelvic drain, changed my wound dressing – which is still slightly discharging – and, after I felt something sharp poking out of my bum, discovered two deeply embedded stitches which the hospital nurse hadn’t removed. That was a painful and humiliating experience, with the lovely nurse pretty much sticking her face up my bum and digging around in my skin for the blue rebels while I lay in a self-conscious foetal position begging for it to be over. As she yanked them out, pulling out several pubes, I clenched my teeth and tried to stay as still as possible. I have never been so relieved for something to be over!

Anyway, I’m sat in the flat waiting for my parents to arrive for another day on my step to recovery. I’m just about to tuck into my not so yummy ensure drink and start tackling my French, which I’m determined to be able to speak basic sentences by the time I return to work.

I hope everyone is well and happy and ready for Easter. My only problem now is trying to get a Mother’s Day card and gift without my mum noticing! Hard when you can’t leave the house and you’ve missed the delivery date.

Waking up in a fog of morphine – recovering from ostomy surgery for the final time?

This time last week I was coming round from a major operation. I was groggy, spaced-out, nauseous and exhausted. Shockingly (and unlike last time) I remember quite a lot of what happened in the hours after I woke up, but I still think someone could have told me they’d transplanted a donkey’s head onto my shoulders and I wouldn’t have even twitched.

Waking up following heavy anaesthesia is a bizarre experience. You can vaguely hear what’s going on and sense people fussing around you, but even if you try to come to your senses and communicate, your body and mind doesn’t give a crap and simply wants to remain in a state of tranquil ignorance. It simply refuses to respond to commands whether given by yourself or by nurses and doctors poking and prodding you in the recovery room.

Rousing in the recovery room is a daunting feeling, one that always reminds me of a scene from an alien encounter or zombie experience in a movie, where the unwilling patient is strapped down, drugged and experimented on despite being able to see the faces of their tormentors bobbing around in front of their drooping eyelids. It really is another world in there; one where tubed and wired-up patients lie in rows waiting to be roused and taken back to their wards. It is not really a place of panic, screaming or yelling, as the sedative is still too gripping for us to feel the true extent of the surgery aftermath – but a place of bleary-eyed confusion and slow responses.

During my subtotal ileostomy operation 11 months ago I don’t remember anything about the recovery room. Apparently I was drowsily chatting away to the nurses removing tubes and administering painkillers, but for all I know I told them I was the Prime Minister and owned a £2M mansion in the Maldives. I don’t remember much following that operation apart from finally waking fully alert around 10 hours later screaming in agony and realising I did in fact have an ostomy bag and a massive scar right down the middle of my once flat stomach.

This time I remember pretty much everything. I didn’t have an epidural for this operation – I point-blank refused following the massive complications last time. I guess that means I was probably in more pain following this major surgery than I would have been if I had given it a go, but I just didn’t want to take the chance again because I was frightened it would go wrong and no one would believe or listen to me again. 

Anyway I remember what happened before the dreaded op and the aftermath. On the morning of the big day I woke up after a rather restless night at 6am in order to drink an obscene amount of this pre surgical drink. I think it was 400mls, and that’s following 800mls of the vile tasting stuff the night before – no wonder I was up and down to the loo all night. I headed back to bed for a reassuring cuddle before shakily showering and arriving at the theatre admissions waiting room at 7.30am.

The theatre admissions room is full of fear. Everyone has that half-slept scared out of their minds glazed look about them. The people there were anxious, puffy eyed and exhausted. I sat in silence with my boyfriend waiting until he had to leave – apparently partners are not allowed to stay – you have to spend those agonising last few minutes/ hours alone with no one to distract or comfort you. It was hard saying goodbye to Andy: mostly because I was frightened (you never know what will happen in major surgery) but also because I just didn’t want him to leave my side. Luckily it all went very fast after he left and it was only around half an hour before I was donning a bumless gown for my big op.

Before I forget, this operation almost didn’t happen. After all the weeks of worrying and questioning my judgement I almost didn’t go under the knife last Wednesday. My surgeon was concerned about the cold I’d picked up from a flu-infested office, you know the one that was making me feel like I was going to pass out 24/7. Anyway the anaesthetist disagreed and said I was coming to the end of it so why delay? I honestly don’t know how I felt when she said it was a go; part of me longed for it to be cancelled, the other part would have been devastated to have to wait anxiously for another month for a surgical slot.

Anyway I did what I always do when I’m nervous or scared – make jokes and chatter. I was chattering away about my holiday to Venice as they administered the dose of anthestia. And this time, unlike the normal try to count backwards from 100, I was asked to talk about where I would like to travel next, so I started whittering on about how much I loved Italy but was hoping to travel to America next year….before I got far I was waking to the bustle of the recovery room.

I remember the nurse talking to me, trying to find out if I was ok, if I was in pain, if I knew my own name etc. To be honest I couldn’t tell her. I guess I was surprised I was awake so quickly, it felt like only a second had passed since I was put under – in reality it was around three hours. I remember frowning as I heard a nurse tending to me moaning she should have been on her break, before I was put back under and woke up to my partner sat next to me on Ward 44, which was both reassuring and weird in my dopey state.

More about my time in hospital and recovery tomorrow…. but for now know that I’m doing well and the only thing I regret is the sore bottom!

 

The last supper – night before my second operation

Tonight I’m pretty scared. I’m sick with the thought of going under the knife tomorrow morning. But despite the fear and dread, I’m feeling slightly positive. I’m feeling hopeful that the end is almost in sight.

I mean if you think about it, today might be my last day with my fistula pumping out blood and mucus all over the place every hour of the day and night. And, who knows, it might be the end of the awful symptoms of this God forsaken illness once and for all.

Yes, I know I will never truly be rid of my colitis. Most of the damage has already been done. But I hope never to see blood again in the toilet basin, collapse or pass out in agonising pain, or be so drained from constant toilet trips and vomiting I can hardly keep my eyes open at work. I hope that this time tomorrow the damaged part of my bowel will finally leave me be, and if that means living for the rest of my life with an ostomy bag so be it.

As you all know the last few weeks haven’t been easy. I have struggled over whether I made the right decision by going forward with this operation to make my ostomy permanent, I wondered wether I would live to regret my choice. But with my rectal stump becoming more and more inflamed, bleeding and ulcerated and generating around 2 pints of bloody mucus a day, I have realised I would be naive to think this illness would ever go away without this final operation.

The last few weeks my fistula has been a nightmare. I have had more leaks in the last fortnight than the last six months, and have ruined more knickers, tights, pjs, trousers and dresses than I did in the first few days after my first operation.

Some of the horrific leaks, teamed with the tugging pain and nauseating pulsing from the fistula on my stomach, have given me the confidence that this is the right decision. That, and the overwhelming support from you guys, my blog readers, the IBD/ostomy community, friends and family. I have received so many amazing messages of advice and support over the past week alone which have made me realise I am not alone and that there is hope and light at the end of this dark tunnel.

Thank you for giving me strength and hope.

No matter what happens on that operating table I will be one step closer to the end of my battle with Ulcerative Colitis. And as I drink my pre op energy drink I know it will all be over soon.

It will be ok.

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.

My first World Ostomy Day – showing my stoma six months on

So today is World Ostomy Day. This is my first one since the birth of my stoma Winnie, and she is really celebrating it!

Me and Winnie getting ready for a night out

I’ve always been open about having my ostomy bag and about what life is really like with my stoma. There is no point pretending that life without part or all of your large bowel is hard and that having a bag of poo hanging on the outside of your body doesn’t make you feel like shit. I really don’t think there is any point me sugar-coating it…I would just be lying to myself and to you guys.

Life with an ostomy bag can be, well, crap to be honest. There can be days where my bag just leaks and leaks, or my stoma stops working together. There can be nights where I am woken up 10 times as endless amounts of weird-looking food (that I seriously don’t remember eating) make their way out of the hole, filling the bag to the point of explosion. And don’t get me started on gas…no, seriously don’t get me started on it!

So, during my six months living with my ostomy I have been humiliated in hospitals and at airport security, had a few very painful experiences with sweetcorn and some

would you know I had an ostomy?

unfortunate leaks in the centre of town. I’ve also had the added problem of my mucus fistula – or second stoma. I’ve yet to find a pair of jeans that don’t cut off Winnie’s circulation, and I have moments where I look in the mirror and truly miss my old body…But would I change having an ostomy? NO…not for anything in the world!!!

Yes, I am being serious. I am proud of my ostomy, I am proud of my stoma, and I am proud to call myself an ostomate. Would I tell someone about it on a first date if I was single, I can’t honestly say that I would, but many people don’t tell potential partners about their kids for god’s sake!

The first time I showed my ostomy to the world Dr Christian Jesson retweeted it to all of his hundreds of thousands of followers and my blog went global. The support I got was unbelievable. No one said URGH or EWH – there was no hate, no disgust, just a heck of a lot of support. It was overwhelming.

Skin still a little painful 6 months on

So to celebrate World Ostomy Day here she is – six months on, my problematic stoma, who can be both stubborn, rebellious and down right cruel. But she also saved my life and stopped me living in constant pain. So cheers to you Winnie, and cheers to all the ostomates out there. You are brave to just comprehend the idea of having a stoma let alone putting up with the day in day out challenge of living with one. I raise my glass to you all…we made it through the surgery and we shouldn’t hide in shame…why should we, we survived and we are all stronger people for doing it. I hope you will join me by wearing your ostomy with pride today to show the world that we have nothing to be scared or ashamed of!

Ok, so I wish I’d known before today, when I saw it on twitter, that it was world ostomy day, I would have done something really special to spread awareness. But, I guess this will have to do, oh and having our house party to celebrate my surgery and Andy moving in – which wouldn’t have been possible without Winnie because of my

From the side

Crohn’s/ UC.

So, if you don’t have an ostomy that’s all it is! It’s just a little pink lump on the outside of my body – it’s not minging, it’s not gross and it’s definitely nothing to be ashamed of. It is a lifesaving and life changing operation. Yes I poo in a bag, but it’s just poo and you do it to…so what’s the problem. In fact mine is more controlled than yours!

I’m proud to be an ostomate, and although you can’t tell I have a stoma with my clothes on, I will never deny or hide that I have an ostomy. Why should I???

 

Romance in Venice – boats, rivers, towers and my dream trip on a gondola

Arriving in Venice was a bit of a whirlwind. With both our phones

ARGH THE PLAGUE

failing to get a signal (thanks Orange, or do I mean EE – great that you are an amazing service provider but not in Italy I guess) and us having no idea where our apartment was or where we needed to meet the woman who was renting to us, we were, in theory, officially stranded.So while the other thousands of couples who arrived in arguably the ‘most romantic’ city in the world we stood staring out our supposedly ‘smart’ phones, wondering why for all the technology stuffed into these little pieces of technology – all the fancy apps, music and weird voice recognition thing that asks me to yell instructions at it if I hold down the menu button too long – neither of our iPhones was able to perform the simplest of functions – simply to ring someone.

A real movie star moment

So as we stood on the taxi bus surrounding by Italians and tourists I hardly noticed the stunning scenery and film set esk scenes passing us by due to the sheer panic that we were most probably heading in totally the wrong direction. Luckily we were and Andy managed to get another tourist (who didn’t have such as rubbish service provider) to text the landlord who finally arrived after us both attempting to us the very confusing and ancient public phones, which for all our combined qualifications and intellect which just couldn’t seem to work out how to use – we did eventually, but obviously you can’t teach common sense! If I’m going to be honest I think the landlord knew exactly were we where but decided to let us stew for a while longer – which due to my very temperamental ostomy bag I was not very happy about whatsoever.

During the whole trip I didn’t really have many real problems with my ostomy, which was surprising, I did have issues with my fistula, but I will get into that during a later post, for now lets stick to Venice.

Winnie managed to survive the plane trip, boat trip and walk to the

Money saving home made butties in the most picturesque lunch spot

apartment (which can only be described as a disappointment, dingy and rather shockingly covered in blood splatters which I mistakenly assumed were kids crayon marks until Andy splattered a mosquito and I realised the walls were covered in blood!), and we managed to get a quick change and make it out onto the winding and picturesque streets of Venice with few issues whatsoever.

Relaxing after finally making it to the apartment and Venice

If you haven’t visited Venice you really should do it in your lifetime. It is exactly how you imagine it. It really is a living film set, exactly the way you see it on films like James Bond (you know where the house collapses into the canal) and the Tourist where stunning Senior Depp jumps across rooftops into a marketplace (well that’s all I remember anyway). I honestly would say it is one of the most beautiful cities I have ever visited, and, weirdly enough the most eerily peaceful and quiet. I think you have to go there to understand what I mean, but one minute you feel like you’re about to pass out through the density of the crowds squishing you against the walls in the piazzas and tight alleyways, then suddenly, without any warning, you turn a corner and you are totally alone – it is both frightening and beautiful at the same time. In those moments I never knew wether to scream and run in fear that a mad axe mad might chase me through the maze-like alleyways (scary movie style) or stop and just breath in the moment. If it was Manchester you would have run for your life fearing you’d stumbled into Moss Side by mistake, but for some weird reason in this foreign country where everything was alien letting you’re guard down seemed a perfectly sensible thing to do. I lived for such moments, and what’s important is we made it back without loosing any limbs in an alleyway attack!

Anyway, most of our time in Venice was filled with us randomly exploring the maze of the alleyways trying to find the real side of Venice. And we must have seen a lot of things most tourists who stick to St mark’s Square and the other main sites never get to have a glimpse of. We wandered into traditional wine bars (one we loved was right near our apartment, and very cheap for a glass of gorgeous red), stuffed our faces with icecream, pizza and pasta. Oh yes and ran away from a restaurant without paying the service charge – spending the rest of the trip looking over our shoulders frightened the police were coming after us – such criminals, but I will not pay for rude service!

Going up the tower in St Mark’s Square was an experience. Looking

Up tower in St Mark’s Square

back now it was a very mediocre one and not one I would do again after climbing up towers in Florence, Pisa and Rome which offered far more impressive views. You could only take the lift, something I always hate doing as it gets rid of the sense of accomplishment you get arriving at the top totally out of poof, and you really did struggle to get nearer the netting to admire the views due to the sheer amount of people trying to take pictures of every inch of the city from the top.

We didn’t do Dodge’s Tower, instead choosing to take a trip to the islands. If you go I really recommend you do this. It takes half a day and you see some of the picturesque areas, where literally a handful of people live and work. Just be careful not to stand up to quick on the boat, I did, and I think my head is still spinning from the sicking crack I gave it. The islands were stunning, especially the one, and I can’t remember its name, which seemed to offer the most idilic alternative to Venice to get married. The brides I saw were glowing with happiness, and I think that would be just what I wanted if and when the time comes for me to tie-the-knot – that is serenity, beauty and that happy glow.

so peaceful

One of my favourite moments was finding an icecream shop (which did dairy free for me WHOOP) and sitting with our legs dangling into the canal watching the world, gondolas and speedboats go by while reading our books. While we were sat there a sting quartet and pianist started playing orchestral tunes, including Just One Cornetto. It couldn’t be more perfect, that was cheapest night and our last night in venice.

Anyway I know you are all longing to hear about it. Yes I did it…no I didn’t get engaged if that’s what you’re thinking, but I fulfilled a lifelong dream of going on a gondola through Venice. This was one of the stoma bag lady challenges I was looking forward to the most, and it didn’t disappoint.

Yes ok it is very expensive and you can’t barter to get the price

The most magical experience of my life – the gondola

down. There is a city wide blanket fixed price of 80 euros for the 40 minute trip. This is for two people. Yes, you can get it half price if you share with another couple – but where’s the romance in that, knowing our look we would have got stuck with a screaming kid or a manic depressive trying to throw themselves in off the boat every five seconds. And if you go after 7pm the price soars up – so we, as savvy customers heading out for the ride at 6pm dressed up in our finest just so that the experience would be even more romantic – I mean a lot of couples were wearing shorts and T-shirts, some even had backpacks, what’s the point in spending all that money if you’re photos are not special??

The trip was everything I hoped and more. We carefully sourced our driver…which was important as we had seen rather horrendous sites of them smoking, chatting on mobile phones and other unimaginably unromantic things while taking poor couples down the Grand Canal on their ‘romantic’ trip. Ok he didn’t sing, but he gave us a very informative guided tour as he leisurely paddled us down the tight waterways even taking us down onto the main canal to see the Bridge of Sighs and the main bridge (I forget its name).

The canal didn’t smell contrary to popular belief. Chester smells worse on a sunny day. The ride was romantic and idilic and extremely peaceful. I felt safe and secure even as the gondolas came towards each other and the drivers calmly negotiated the tight corners to try and avoid crashes which would have sent many a half asleep couple flailing into the canal.

If I hadn’t had my surgery I wouldn’t have been able to sit still for that long, that’s how bad my Crohns/Colitis had been. Instead I leaned back and breathed in the sights and sounds of one of the most beautiful cities in the world in the arms of a man who I truely love more than anything in the world. And nothing bad happened. It was a dream come true, really it was. I couldn’t have hoped for more, I just wish it had lasted longer. It was one of those unforgettable once-in-a-lifetime moments, and it will always be with me no matter what happens next.

A decade in the making – finally being diagnosed with arthritis

The first time my hands froze into a claw-like grip, curling up like the crazed witch in

Mugs can be too heavy to hold when my hands are bad

Walt Disney’s Snow White as she gives her the poisoned apple, I thought I was having a stroke. I was sitting in a GCSE maths exam scratching my head as I tried to work out some crazy mathematical equation and suddenly my hand just wouldn’t move. I tried putting down my fountain pen, but my hand wouldn’t let go.  It was suddenly like my fingers had been glued to the shaft of the special pen my parents had bought me for school that year. I remember looking down in confusion and seeing that my hands had gone a skeletal shade of white. I remember prodding the death-grip hand with my normal fleshy coloured hand and the rising panic as my fingers started turning black as the blood failed to come back into my hand as I prodded and prodded.

Shockingly I didn’t fail that GCSE. I managed to battle through, but not until I had painstakingly prized my fingers apart, slowly moving my stiff joints until they were flat on the desk next to my incomplete test paper. It seemed to take a life time as the exam clock ticked slowly away and my future seemed to be literally slipping through my wax-looking fingers. I remember thinking that everything would be ok as long as I could finish the exam – and as long as my fingers didn’t snap off!

I was just 15-years-old.

My hand – when it broke two years ago and osteoporosis was discovered

Over the years this joint stiffness intensified until there were days when I literally felt like a tin man needing oil just to move. Every bone, joint and muscle felt like it was made of stone. I creaked when I moved, and when stretching in certain ways my bones made a sickening snapping sound.

Some nights, after gripping a pen all day or spending hours shading and sketching for my GCSE and A Level Art coursework, my hands would freeze solid when I was trying to eat. My dad would have to prize my fingers one by one off my knife and fork, pulling my joints painfully back into position. I still have to do that now. But back then it all seemed so much more frightening.

My hands went through their most challenging few months when I was learning shorthand for my journalism course. I would spend hours every day scribbling the hieroglyphic like symbols, forcing my hand to move faster and faster across the page in an attempt to get up to the required 100 wpm. It was agony. In some of the exams I had practiced so much before the test that my hand simply wouldn’t move across the page. Every second was agony. Of a night after hours of practicing i would lie with my hot water bottle pressed against my wrists trying to ease the pain shooting through my joints…I often dropped wine glasses, pens, handbags. It still happens now after long days in court, but I guess I’ve just got used to it.

Learning shorthand was like boot camp for journalists…survival of the fittest, but it was torture for my hands, and the more they stopped me progressing the more frustrated and depressed I became.

Me on the PA course for Journalists – best 17 weeks of my life but most taxing on my hands

Over the years the pain that started in my right hand and wrists has spread to most of the other joints in my body. I often lie awake at night due to the pain in my lower back, my knees sometimes give way and my blood in my wrists sometimes feel like its burning as it travels through my veins. My shoulders are the worse, they always feel like they’re dislocating, and I can’t undo my bra from behind.

Despite all these obvious joint problems, and despite complaining about them to my gastro consultant, IBD nurse and surgical team, I have never had any treatment for my joints. I have always been fobbed off with the bog standard “It’s all related to your Crohns/Colitis” reply to my pleas for help. This has been going on for almost a decade.

Last week I finally got an appointment to see the Rheumatologist. I was astounded when I opened the letter, if anyone had been watching they must have thought I’d won an amazing prize from the delighted look of astonishment on my face. I went along to the appointment and after being stretched sideways, backwards and forwards by a very lovely consultant I was told I had Rheumatoid Arthritis – possibly induced by a decade of steroid treatments combined with the side effects of my Crohns/Colitis.

I would have punched the air if I didn’t have such bad joints. It was a ‘I told you I was ill’ moment that would have made Spike Milligan proud.

I already have osteoporosis, and now I almost officially have arthritis. I say almost as I have to get some tests done before anything can be certain, including a scan of my back, bloods..etc. But I am finally getting the treatment I need, and amazingly enough I have been signed up to get physiotherapy – at last.

I guess only time will tell how much damage the doctors ignoring my symptoms for the past 10 years has done, but for now I’m just happy that someone has finally listened to me. I’m hoping that the injections (humira? – which I have already been there done that) will not only mean I can finally open a bottle of pop without knocking on a neighbour’s door for help, but control my IBD which is on the verge of an especially nasty flare at the moment.

Meanwhile if any of you have any advice for things I can do to ease the constant joint ache and pain please let me know.

A very problematic fistula

After a couple of days of really bad pain, tenderness and a few pretty disgusting leaks, I

OUCH!!! My mucus fistula looking very angry without its bag on

finally gave in yesterday and rang the stoma nurse about my fistula. I guess I just couldn’t take it anymore. The trigger was when I went to the toilet at work and I noticed that the blood had come back…it took everything for me not to just breakdown there and then.

So according to the registrar, a very bemused looking doctor the stoma nurse dragged kicking a screaming into the clinic to look at my very temperamental fistula, I am “on the verge of something big”! Sounds exciting right? Well what he meant is that the horrific symptoms are starting to return, only this time as I only have a tiny bit of colon the agonising and crippling pain from before is more like a dull throb and twinges like someone is pulling at my bowel with a pair of tweezers. He means that I am in all probability on the very edge of a major flare of my Crohn’s/UC…and that it is time to nip it in the bud before it spirals out of control and I end up flat on my back squirming around in agony again.

This is all because they didn’t take my whole bowel out last time I was on the operating table. There are a lot of reasons for this, none of which i can really explain, but the long and short of it is that I have a mucus fistula, and that combined with my remaining colon (still full of Crohn’s/colitis) is what could send me hurtling back into my illness again…all this would have been solved if he had just whipped it all out at once..typical man!

My mucus fistula formed after my supposedly ‘perfectly healing scar’ exploded one night on the hospital ward sending what appeared to be the entire contents of my stomach pouring onto the floor. I have been through a lot of scary stuff in my life due to my illness, but I have to say that my stomach tearing open has to be one of the most horrifying moments so far – I would put it up there with the first time I blacked out and hit my head against a sink as the entire contents of my body appeared to drop into the bottom of the toilet one afternoon. I remember just standing in the bathroom screaming as this luke warm brown liquid cascaded from my stomach, reaching out in shock to press the emergency call button, screaming my stomach is falling out in a wild panic while the nurses swarmed around me trying to calm me town, telling me ‘it’s perfectly normal dear, you’ll be ok’….in what world is your stomach splitting open normal??? Oh yes, in the world of IBD and abdominal surgery, that’s right!

Anyway, since my surgery I have had a few hiccups with my hole in my stomach. It’s no bigger than a thumb print, but boy can it cause havoc when it wants to. According to my surgeon it formed when the stitches holding my remaining rectal stump (the remaining bit of colon they left in when they removed the majority of my large bowel) came undone and, not wanting to feel left out, the remaining bowel squirmed its way to the surface so it could form another stoma. I like to think of it as my second stoma, and although it is a pain and not a pretty sight if it hadn’t burst through the surface, like a little worm peeking out of the soil, the mucus in my bowel would have discharge into my body causing a world of problems and making me incredibly ill.

So I guess it’s the lesser of two evils.

But I hate my mucus fistula. Having it means I have a second stoma bag. Ok, its only a baby sized one, but I really didn’t sign up for having two bags, one has been hard enough to accept. I have embraced Winnie, and, although I wouldn’t say I love her, I’m never disgusted or angry about having my ileostomy. Winnie is simply part of me and without her I would still be incredibly ill and in a heck of a lot of pain. But no one ever warned me that I might end up with two bags, and, and this has been the hardest thing to stomach, that I could have to put up with it for the rest of my life if I don’t have a second lot of surgery.

Anyway I’m stuck with it for another six months when I will finally be fully colonless. For now I’m putting up with my mucus fistula, the only problem is it’s not making life easy. Over the last few weeks all the side effects that seemed to miraculous vanish the morning after the operation have started to slowly return, and my fistula has started generating more and more mucus filling the little bag in record time and causing some rather horrific leaks that have ruined more than a couple of pairs of my favourite PJs. The stuff it generates is pretty horrible, its like a sicky brown colour, I suppose a bit like baby puke…NICE! And the smell, urgh, it’s so pungent. The worse thing is it comes out both ends, which is something very surprising when you’ve had your bowel removed, it may sound silly but you would think you wouldn’t be able to poop anymore, but this stuff just won’t stay in, there’s no control, it just kinda floods out.

The worse thing is the pain as the stuff shoots out of the tiny hole in my fistula. It literally spits it and the pain, if I happen to be walking, stops me in my tracks. It feels like I’ve been kicked in the stomach and leaves me breathless. It also incredibly tender and even if the ID card I wear at word lightly touches it I want to scream in frustration…seat belts are an especially horrible experience. But compared to before it is like a minor headache, like a tiny mosquito bite when an elephant is bouncing on your stomach, I can cope with it, but not if it means getting ill again.

I refuse to get ill again…I’ve been ill for as long as I can remember, and for the first time in my life I was starting to get used to not waking up and going to bed in pain. That can’t return, and even though that means I’m going to have to spend the next 6 months shooting all sorts of things up my sore backside I’ll do it if it means I never have to feel that pain again.