The painful and often hilarious road to recovery – drain pulling, arse up and bikini waxing

Why is it every time I start to talk about being well do I find myself lying on a hospital bed with my bright red bum sticking up in the air like a baboon displaying its sexual availability? 

Last Monday I finally had my drain taken out of my pelvis. An experience which will be etched on my mind until the day I die, and indeed will probably be one of thousands of images of my bum waving around in the air which will flash in front of my eyes in my final moments. It is also an experience I never want to go through again. Last week I found myself back on Ward 44 waiting to see my heroic surgeon, who was in a rather chirpy mood (he was going on holiday again!) as I stumbled into the stoma clinic and the scene for my next probing session. As per usual he checked my stoma was working, my scar was healing, before uttering the dreaded words….”I need you to turn on your side so I can look at your back-end” (well possibly more technically put). I always think the best thing to do at this point is leave all sense of modesty aside and just whip your panties down and let them have a good poke around. Which I did. But it is always at this moment, when my bum is unceremoniously  thrust in my surgeon’s face, and a team of student nurses are bobbing up and down over his shoulder for a closer look as I huddle my knees closer to my chest, that I start wishing I’d had that bikini wax in the weeks before my operation. I couldn’t care less that my bum is all stitched up and I can no longer poo or fart, I’m worried that the world and his wife are looking at me and wondering why I haven’t stuck to my end of the bargain of personal grooming, or why the hell I’m wearing those faded granny pants reserved solely for laundry day.

Anyway only moments after my 3D pink scar lining my bum had been given the all clear I was left alone with the ward sister whose unenviable task was to remove a drain from my lady parts. My surgeon departed the room with a cheery wave and with the confidence inspiring words of “don’t cut her vagina sister, you have done this before right?”. I felt the hot wave of panic flush over me, and I had an overwhelming urge to let her simply leave the drain in (no matter how uncomfortable, inconvenient or ugly it is) forever. Part of me thought that there was no way I was letting this rubber gloved and scissor wielding woman near my lady parts, not for a million dollars, the stronger part of me, who has battled more painful procedures, thought suck it up Flint it will all be over soon. I should have listened to my gut and run as fast as my muscleless little legs and flailing drain bag would allow me to.

Sister Sue said the magic words assigned to all nurses for these moments of panic. When I asked her if it was going to hurt she said “it might be a bit uncomfortable”, describing my drain as a pig tail – to which I imagined a little pink tail hooked into my pelvic muscle refusing stubbornly to budge for love nor money as she waggled it out. I couldn’t have been more right, and she couldn’t have been more wrong. I like to think I have a fairly high pain threshold having lived with severe Ulcerative Colitis and all its horrific side effects for most of my life. I’ve been through far worse than having a drain pushed and pulled out of my vagina, but to describe what she did as mild discomfort was the understatement of the century. She must have been tugging at it for at least 25 minutes as it simply refused to let go. I’m ashamed to say I moaned and yelped and at one point screamed out in pain as she tugged and it felt like my whole abdomen was about to explode through the pressure. Anyone passing the room must have thought I was having my eyeballs removed under some sort of torture due to the farm-yard style noises coming from the stoma nurse room. I panted and puffed as if I was in labour, until she finally came to a halt, embarrassingly confiding in me that it was almost out but had got wrapped around a rather stubborn sprout of pubic hair….if I hadn’t been in so much pain I would have died of shame!

photo 2As it was finally yanked free I stared in wonderment at the tiny coil of string which had caused such pain over the past couple of minutes. It always amazes me how something so small can cause so much disruption. Being free of the drain was an overwhelming relief, but the feeling that the string and tube were still firmly lodged inside my pelvis and protruding from my vagina remained, it would be almost two days before the ache started to fade and I felt almost human again.

Walking with a drain or catheter is a bizarre experience. For a week I dragged around the heaving bag of septic mucus and liquid with it dangling down my leg and having to hoist it up to sit down, stand up or go to the bathroom.  When I left the hospital they finally gave me a leg strap so I wouldn’t be forced to carry the clear bag around like a medical handbag for all to see, but that still presented challenges, with me struggling to conceal it under my baggy track suit bottoms, pyjamas and loose trousers. The plastic spout always found a way to work itself into view and almost trail along the pavement while I attempted to walk in a cowboy like style during the days of building myself up slowly walking into town. Having it taken out meant freer movement, less pain in my abdomen and the prospect of wearing jeans, skirts and tights again. It has meant a new world of freedom, and has been a blessing relief to be able to sit down properly (well to an extent) without having to find the rare position which doesn’t cause pain – difficult when you have stitches in your bum and a drain sticking out of your vagina – take my word for it!

Now, just over a week after having my drain pulled out, I have finally managed to get a taste of my normal life back. Yes I’m still the woman who can be seen every day at around 2pm hobbling into town with crowds of students stuck behind her as I walk slower than a grandma with a Zimmer frame, and yes I’m still struggling with food and feel like fainting over the prospect of wearing a bra over my tender scar – but I am able to move around and at times leave the flat to buy a paper, sweets or simply to feel the air on my face. I also am hardly seen without a doughnut ring cushion (you know the ones I mean – mostly used for piles etc), which embarrassingly enough has my name written in huge letters across it, a security device against theft my mum put in place while I was in the hospital. But walking into the city you work in as a well-known newspaper journalist with your name emblazoned across a medical pillow associated with piles is not always a good thing – especially in a small town like Chester, and when most of the criminals know exactly who you are and now believe they could jump you at any moment and due to a problem with your bum you couldn’t begin to run away.

Over the past few days I’ve walked significantly further than I thought possible so soon after a major operation. I’ve stumbled through gardens and shopping centres, marvelled at daffodils and sunflowers, and managed to start cooking. I’ve sipped a giant non alcoholic cocktail at my best mate’s leaving party (sob!) and put on minimal makeup in a bid to look human again for the first time since my operation. I watched in amazement and horror as my boyfriend was forced to conquer his fear of heights by swinging from the tree tops in Go Ape at Delamere Forest. I was struggling to stay on my feet and dealing with my overwhelming instinct to run from seemingly harmless dogs as we traipsed around the course following his exhilarating zip wire course. And I was more exhausted from the massive walk through the forest than he was climbing trees when we got back to the flat frozen and covered in mud on Sunday 3

Yesterday I made it to the small theatre in Chester to watch a remarkably entertaining amateur dramatic production. It was a comedy, but an agonising one both due to the rock solid seats on my pink bottom and the agony from my raw scar as I laughed out loud at some of the scenes. The play was excellent, but my bum and joints didn’t agree to sitting still for hours on end and it was a blessing relief to sit back at home on my polo mint pillow ( which, to my horror, I forgot) drinking a hot chocolate and scaring myself shitless watching The Following.

On a serious note every night I pray I will continue on this remarkably fast if painful road to recovery. I pray for hope, courage and bravery, not just for me but for my family, boyfriend and friends, and for everyone awaiting or recovering from surgery, or who is experiencing a flare or has recently been diagnosed with a chronic condition. I’m not devoutly religious, but I’ve always found a few words help keep me grounded and give me hope. I can’t sleep until I’ve said these words or silently prayed in my head. For some weird reason Winnie always farts during my prayer and makes me laugh, and I find myself in the bizarre position of apologising to God for my stoma’s rudeness and bad timing!


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

Overwhelmed by your acceptance

Before I tell you about mine & Winnie’s ‘big weekend of adventure’ searching for Banksy’s famous street art and almost collapsing in the weirdly sweltering heat while lost in Bristol (yes Andy, we were lost!!), I want to say a massive heartfelt THANK YOU to all of you!

Me & Winnie at Gay Pride in Bristol - just a little bit burnt

Me & Winnie at Gay Pride in Bristol – just a little bit burnt

Four days have passed since I revealed Winnie in all her naked glory to the world, and I have been bombarded with tweets, Facebook messages and comments from people all over the world thanking me for sharing her.

For years I dreaded the idea of having a stoma. In my mind the birth of Winnie meant I would have to live the rest of my life trying to hide the pink lump on my stomach, covering her up with baggy jumpers and bin-bag style shapeless outfits. I thought I would be living the rest of my life in shame. People would point and stare at the shape of my bulging ostomy bag under my clothes, and I would be labelled a freak, disgusting, minging or dirty.  I thought that it wouldn’t matter what I wore, where I went, what I tried to do with my life or who I tried to confide in, no one would ever look at me as a normal 25-year-old woman again (not that I have ever been normal #lol).

Hope you can read back to front

Hope you can read back to front

I guess I thought that once I had my operation I would just be that girl with the bag of poo on her stomach. I guess I believed that my stoma would define me, just as my Crohns had done in the past.

For example:

Last year I was out celebrating a friend’s birthday. We were having a lovely night, chatting, drinking wine and gossiping at her gorgeous flat before heading out on the town. I was feeling ill, but wanted to have fun and ended up talking to one of her friends (who was a medical professional) about my Crohns/Colitis. She seemed understanding, and asked all kinds of questions, which I happily answered. Everything was ok until a couple of glasses of wine later (I only had one or two, she might have had bottles), when we were dancing in a packed bar and she yelled ‘OY CROHNS’ across the dance floor at me.

Looking back I wish I had gone up to her and said something witty and cutting in response. If my friend had heard she probably would have slapped her in the face. But at the time I was totally shocked into silence. She had called me by the name of my was like I had been slapped in the face! Needless to say I headed home soon after the ‘incident’ and have never spoken to that rude and nasty individual again!!

So after all my years of worrying about the world not accepting my stoma – or even me coping with living with my stoma – words cannot describe how it has felt to receive so many messages of support from fellow IBD sufferers and ostomates from all over the world. I am honestly speechless (and if you know me that doesn’t happen often). I have been called an ‘inspiration’, ‘brave’, ‘positive’, ‘sunny’, and Winnie has been described as ‘beautiful’ and ‘perfect’. I have never been one to take compliments easily, and I have certainly never been called an inspiration before, so I was shocked and overwhelmed as the comments came pouring in via twitter, and my voice even started to quiver with emotion as I read them out to Andy while he was driving us to Bristol for one of my more arty challenges. 

When the tweets came rushing in I was half expecting a flurry of negativity. I thought I was about to be bombarded with 140 characters of hate and disgust, telling me that I was ‘minging’, ‘revolting’ had a ‘penis on my stomach’ or ‘poop coming out of my side’. But instead I watched as you all embraced Winnie for all her naked, pink, slipperiness, and welcomed her into the world with a massive ‘hi, lovely to finally meet you’! I waited for a long time for that message of hate and, guess what, I’m still waiting!

There are no words

There are no words

I hope that showing you Winnie naked and revealing the bare truth about life with a stoma will help the world to understand what living with an ostomy is like. Your messages have truly touched me, and if just one person out there is able to see past their preconceptions about what life with a stoma is like; see past their crippling fear of living with an ostomy; or even gain a little understanding of what a life-changing operation this really is, then showing Winnie to the world will all have been worthwhile.

You have all made me feel so accepted, so welcome, and so natural. It has been a feeling that I have wanted for so long – don’t get me wrong many people in my life have accepted my Crohns and my ostomy, my family, friends and boyfriend have been amazing about it – but I have never felt this accepted for who I really am in my entire life. With Winnie I feel weller (i know its not a word) than I have ever done in my life – she makes me feel fitter, happier, freer, stronger and more independent than I could ever have imagined. But now I feel a part of something bigger, something tightly woven and strong. I feel like I have been given a massive pat on the back or hug from the world, told I am ok, and welcomed with open arms into a new world of understanding, acceptance and hope.

You guys and the giant marshmallow have made me soooo happy

You guys and the giant marshmallow have made me soooo happy

I may still come out of the toilet with my skirt tucked in the back of my knickers (happened at weekend and flashed special ostomy pants to everyone in Starbucks), she might make farting noises during meetings, meals and intimate moments, and I might still nap like an old lady in the middle of the day, but you have accepted me and my stoma without raising a disgusted eyebrow or questioning our cuts and chainsaw scars – and that’s more than I could ever have hoped or dared to dream of!

Anyway, because this is a little long I won’t tell you about me, Winnie & Andy’s big adventure in Bristol today, I will save that until tomorrow, but for now I will leave you with a taster of what’s to come….