For the past couple of weeks I’ve been seeing things from the other side, my sister has been quite ill. I won’t go into details as it is her business, and while I’m very honest and open about my own condition it wouldn’t be fair to talk about her.
All my life I’ve been the ill one, the one everyone worries about, is sent cards and flowers, the one taking phone calls in hospital beds – it has rarely been the other way around.
But in the last few weeks my sister (who often has coughs and colds but nothing drastic) has been really ill, so much so she needed to go into hospital and have an operation.
It frightened the shit out of me to be honest with you. (sorry for swearing)
It was weird hearing her drugged up on medication, talking to her knowing she was propped up on a hospital bed hooked up to machines, and going through the horrid nil-by-mouth all I want to do is sleep period.
I suddenly went from the one everyone worried about, waited to hear from, tried to entertain when bored, to the worrier and the one trying desperately hard to entertain even though I had no clue what to say.
And it turned out I was rubbish at it and felt totally helpless….I may as well have been on the other side of the world for all the good I did, thank god my parents were there.
Basically the tables turned and I got to experience what my sister has had to cope with during all my years of illness (and my mum and my dad, and my boyfriends over the years).
And I have to say it was a horrible eye opener.
When you are in hospital it is an awful experience: it doesn’t matter how good the care is, how kind and compassionate the nurses and doctors are, or how much people bring you to do, it’s bloody horrible and you’d rather be anywhere else.
I was always so envious of everyone else being able to work, leave, work, eat what they want, work, use real soap and be able to wash their hands with anti-bac and then leave the hospital ward to go home to TV, a hot meal and their own bed. I guess I don’t really think I appreciated that when my folks left after visiting time they took the worrying with them and probably only got the same amount as sleep as I did through panicking about me all night.
While you’re there you know your family are going sick with worry, are trying their best to help and are going through it with you – but I guess I didn’t appreciate just how stomach churning worrying it was until Hannah was admitted to hospital.
Even though I knew there was nothing at all I could do and that she was in the best place, in safe hands etc, I suddenly felt really far away, like I needed to be there, but I couldn’t be.
Luckily my sister is home now, which couldn’t make me more happy. Having been in her shoes I know how nice it is to get back to your own bed, food and teddy bears!
Her being ill has made me realise a few things, one is that I need to be less selfish.
When I first rang my mum when my sister told me she was in hospital she told me I needed to take care of myself as I couldn’t be ill to.
She’s right I need to start taking care of myself not just for me, but for my family, my boyfriend, my career and my life.
How I am affects everyone around me, but it takes its toll mostly on my family. I don’t want the first thing that pops into their head when they get a couple of calls off me to be ‘is she in hospital, is she ill’ – I want it to be what amazing news has she got, has she won and award, is she engaged?
I want my family to be able to rely on me not worry about me. So for everyone’s sake its time to start sorting myself out….I am well now so I shouldn’t still be thought of as the sick one and I don’t want to be thought of that for the rest of my life.
If my sister or my mum, or my dad get sick I want them to be able to rely on me, not worry that I’m too busy or fragile to deal with it. It’s time for me to start getting my priorities, which is my family in order, which means seeing them more often, staying in touch and appreciating them more.
I don’t know how this blog ended up being all about me (which I guess proves my point down to a tee) – so I’m going to shut up.
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.
I’m a pumpkin, I made it to the party and so did all my little children
So on Thursday, having only just recovered from the ordeal of having metres of snake-like black tubing shoved down my oesophagus, I dragged myself to the day clinic once again to undergo another round of probing and prodding.
It was a joy that no words can describe. You really had to be there, and until you’ve had the experience of having an endoscopy you will never truly appreciate the shear horror and hilarity of the situation. It is something you have to experience to understand.
As a veteran of the endoscopy, having been submitted to so many of these bizarre treatments I have honestly lost count, having the metres of tubing probed inside my bowel didn’t really daunt me. Previously these investigations had been risky and tricky due to my bowel being inflamed with 13 years of Crohn’s/Colitis….and yes most of those times the investigations had been met with a sense of dread, mostly because of the discomfort and serious amount of pain they caused. But this time I only had part of my bowel, so although I was slightly afraid of the doctor being overzealous and forgetting I only had a tiny amount of bowel leaving me with the end of the tube sticking out of my abdomen like a weird waggling worm, I knew that it wouldn’t be half as painful or long.
I mean really there wasn’t that much to explore and what could they find that they hadn’t before? The possibilities were endless!
Unlike the day before – where I was left shaking in my boots and terrified when my GI poking around in my stomach said “oh nothing’s where it’s meant to be” referring to my stomach opening being in the wrong place….to which I could respond apart from dribbling and thinking SHIT that’s not good, get out now! – I was strangely calm. I remained cheerful throughout, well as cheerful as one can be when someone is forcing a scope up your arse.
My GI specialist nurse was doing the procedure. I was thankful for that. She knows my bowel better than I know the back of my own hand, and she was able to tell immediately if I was in pain or just uncomfortable. I guess after all these years of being my personal prober she knows just how far she can go before I will start to protest – I tend to be difficult to read as I try not to make any noise while these things are happening.
The low point of the whole thing was not being curled into the fetus position which my bum sticking in the air like a red-bottomed babboon and having someone poke around oohing and ahhing and saying things like that doesn’t look good. It wasn’t even watching in horror as the camera revealed a bowel spotted with ulcers and colitis looking like the scene from Alien, or the tugging sensation as they take the biopsies. No it was the reassuring chit chat before and during the investigation, supposed to calm me down and help me relax, but it really didn’t, do you know why? Because the nurse watching this very personal moment, and in charge of cleaning up after my bum and its contents had been exposed to the world, remarked on my address and then said “oh my brother lives on your development”. FANTASTIC so his first impression of me is going to be of a shiny bottom sticking up in the air…great first impression.
Anyway the results, from what we could see from the scope, were not great. Of course they were not the worse results of these investigations I have ever had…the last one revealed my bowel was beyond repair. This time they showed what was expected, that my Crohn’s/Colitis was very much starting to gain control on my rectal stump, and that, although it is not yet at emergency point, I am not doubt in the grip of a flare.
I mean I could have told them that without them sticking a big black tube up my arse.
I felt a bit wobbly after and considered going back to work. However, after being dropped home by a colleague I was soon glad I had resisted the temptation to go back to work. Due to the substantial amount of air I had been pumped up with I had an afternoon bout of uncontrollable farting, and diarrhoea to contend with….nice! Luckily this had gone down in time for my mate’s fancy dress Halloween party on Friday night, not that it mattered as I went as a round pumpkin!
for more information on Endoscopies and other investigations for Crohn’s/Colitis see an amazing document at Crohn’s and Colitis UK:
Before my operation my Crohn’s/Colitis made court reporting an almost impossibility.
Exactly!
I used to sit in agony in courtrooms wringing my hands together until they went white with pain under the press desk, jiggling my legs up and down to try to distract myself from the agonising need to go to the toilet – a need that never left me and always raised its ugly head at the most important moments of a case.
Covering the courts became both a joy and a punishment for me. The real challenge lay not in the reporting of the cases but the endless sitting and waiting, waiting, waiting for your case to come on. For most people the waiting would just be boring, for me it was agonising. While I was interested in the cases (if you have never sat in court and listened to mitigation and witnessed the general drama it is definitely a must – and is nothing like the telly) the constant need to race to the toilet every ten minutes made the waiting unbearable. I once dared to nip to the toilet after waiting through around three hours of driving offences, curfew amendments and restraining orders while feeling like my stomach was being ripped apart from the inside by a claw hammer. I remember racing out of the courtroom to the toilet – which is NEVER near enough to the courtroom you are in – thinking it will just be my luck if they finally hear my case now. I finally raced back to the courtroom five minutes later, still very much in the grip of the blood and pain, only to bump straight into the barristers for my case as they walked towards the Robing Room having heard the case – just typical.
Lesson learned – in the past two years I would rather have passed out than nipped to the toilet again!
Yes, I admit it the fear was always very real that I would pass out through the sheer effort of staying up right in my seat, and I am sure there were times that a jury member or even defendant has looked at me and thought ‘dear God that woman is about to collapse’. I lived in fear of an accident, and in even greater fear of someone making me move whenever a wave of pain flushed over me – when I was still I felt slightly more in control. And I am sure that all the press benches in the magistrates and crown courts that I’ve had the pleasure of sitting in have finger nail marks indented so far into the underside of the wood their imprints could almost be seen through the top.
So after years of covering court cases with the nightmare of my constantly flaring Crohn’s/Colitis, dealing with my ostomy while doing my job seemed like a reality walk in the park. Yes there was always the slight embarrassment of having my ostomy bag changing kit searched through by the security team, (and once or twice having to hand in my rounded cutting scissors at security as a ‘dangerous’ implement) but apart from that attending court was a relatively easy experience. So imagine my surprise when today my ostomy started acting up while I was sat in court patiently listening to each case and waiting for a jury to return. I won’t go into details but I could feel something was going on, and going on, and going on…and boy it just wasn’t holding back, in fact Winnie was going hell for leather. And for the life of me I couldn’t understand why.
So the next two hours were quite frankly hell. I quickly realised that Winnie was going to have to be emptied or we could end up with a pretty crazy situation in the courtroom. Basically Winnie was a ticking time bomb, and I sat sitting nervously trying to concentrate on my shorthand and what the counsel were saying to try to distract myself from the imminent explosion that was building up inside me. The pressure was unbelievable…but I was determined not to leave the room..my old fears about missing things while on the toilet returned and after grimacing through some of the worse pain of my life, there was not a chance in hell that I was going to miss the verdict because of my ostomy – yes, that is how stubborn I am.
Ok, the situation was made worse by my remaining colon continuing to contain active Colitis and me feeling the need to go all the time. The whole thing was unpleasant to say the least, and I just knew I needed to rehydrated and possibly stuff my face with marshmallows to stop this onslaught from Winnie or I would be in a whole new world of trouble soon.
The moment the judge broke for lunch was a blessed relief. I think I actually sighed audibly. As I stood up the weight of Winnie was horrendous and I had to hobble like I had bricks in my pants down the stairs, round the corner to the loo. Court toilets are never an extremely pleasant experience, but I won’t bore you with that.
By the time the day was over I had avoided several natural disasters and learnt a real lesson. While I was in agony with my IBD and the urgency and pain often led to accidents, I could often cope even though it meant me almost passing out with pain until I had a chance to reach a bathroom – with my ostomy this is not the case. There is no grin and bear it. Yes the pain is considerably less, yes the blood is there but it isn’t by the bucketload, but no I can’t stop the flow or ease the pressure when its started…if I wait, sooner or later she will fill up and then, eventually….BOOM! (now that would be a story)!
I will have to learn to cope with it. I love court reporting and I love my job, but I have to keep a close eye on things and remember I’m no superwoman, I’m still human…and, well, Winnie is just a stoma bag she’s not a miracle worker.
Until today the longest bike ride I had done since my ileostomy operation was around three miles. And that had been a struggle. Come to think about it, three miles was probably the furthest I had ridden anything in years, and that was far enough for my skinny little legs.
A quick and much needed break – no I didn’t fall off
So this morning me and Andy (my boyfriend) woke up to a lovely autumnal morning. It was a little cold but absolutely stunning. I woke up fairly exhausted after spending the night on reporting duty trekking around Chester City Centre with some lovely police officers as they tackled drink and drug related crime in the city in the aftermath of the last race of the season. I was with them most of the night running around, trying to keep up with their long strides, and, well trying to not get lost in the crowds of unbelievably drunk women swarming through the city’s streets.
It is a year since I did a very similar operation with the police in Chester. I remember how exciting it was, but how the whole time I was watching the drug dog sniff out wads of cocaine from revellers outside bars and clubs I was constantly panicking about needing the toilet. You see I may not have been in the peak of one of my IBD flares, but I still needed the bathroom around six times an hour, or I would be left gripping my stomach in agony and struggling not to curl up in a ball crying like a baby. I remember managing to throw the pain to the back of my mind until the break – which was after at least three hours – before getting back to the station and locking myself away in the cell-like toilet, and silently sobbing in pain as I tried to ‘let it all out’ before we hit the streets (without loo breaks) yet again. Ok, I hear you say, I should have said something, I’m sure they would have let me pay a pit stop, but I couldn’t and wouldn’t slow them down…I absolutely refused to stand in their way.
This year was different. With my ostomy bag I hardly had to worry. In fact I made it from 7.30pm until I go home at 11.30pm without having to empty or change Winnie. Yes I did worry I would be caught out, and yes I did worry about needing the toilet – but I don’t think I will ever stop doing that – I’m a bit like Jason Bourne these days when it comes to rest rooms. I did panic when Winnie started going into overdrive at the custody suite while I was looking around the cells where some of the revellers would be sleeping off their booze that night. But she survived and to my relief I didn’t end up having to change Winnie in a cell with no basin and a metal loo!
Anyway, after groggily getting out of bed we made the decision to go for a bike ride. Yes we realised that the 20+ mile round trip was a big ask after hardly stepping foot on a bike since my operation, but after traipsing miles and miles around Rome that didn’t seem like such a leap into the dark for my legs. Oh, and there was a pub to be stopped at on the way…so that helped as an incentive.
I didn’t regret it one bit. The weather was beautiful and cycling along the canal was both exhilarating and peaceful. At first we were forced to weave around walkers, dogs and fellow cyclists as we battled along the canal, but then we finally found ourselves alone, apart from a few ducks and MASSIVE dogs and the scenery became simply something else. For a couple of miles we battled on despite the towpath teetering out altogether leaving me exhausted from the grassy mounds underfoot, or wheel. Then realising I was never going to make it back if we carried on, we finally went onto the road and cycled the rest of the way to the pub…a thousand times easier, apart from the fact Andy got a puncture and we had to stop every-so-often for him to pump up his withering tyre.
The pub itself, The Shady Oak, was quaint. Set on the side of the canal the views were
Waiting patiently for food – I’m screaming inside lol
breathtaking. However the service left a lot to be desired and they didn’t take visas or any kind of cards whatsoever. It was an odd phenomenon going into a cash only pub. That’s when we realised we had cycled 10+ miles and probably could only afford a handful of chips between us!! Luckily we had a bit more and managed to share a buttie and chips – from a ridiculous menu I must add, and a ridiculously long wait of around an hour and a half!
Anyway a few other things happened, but all in all it was a magical day. Now sat on the sofa I feel proud. Ok, I’m no Sir Bradley Wiggins but I dug deep when I thought I had nothing left and managed to complete a 22 mile bike ride, which is amazing when you think six months ago I couldn’t walk up 10 steps without having to stop for breath. I feel healthy, but wobbly. In fact I can’t walk at all without my legs shaking, and my bum feels like it has been head butted by a bull. But it is a good healthy sort of pain, one that I am sure will make me walk like a cowboy for a few days, but one that I can be proud of…this is a pain that means my fitness is coming back…so, I guess I like it!
I can’t wait to do it again. It’s happened, I’ve got the cycling bug!
The last stretch – oh and there is my bessie mate in the car next to me – small world lol
In the nurse’s room being treated after kicking-off
For almost 13 years I have prided myself on being a ‘perfect patient’. I have allowed doctors to stick tubes in unthinkable places, endured painful procedures, taken toxic drugs, and had so many abdominal x-rays that have no doubt done irreparable damage to my ovaries. At times I have allowed myself to be submitted to totally unnecessary painful procedures, under the misguided pretence that having a canister of gas shot up my backside would help control my condition – in reality i’m almost 100% sure this was just so some curious trainee could have a poke around in the dark depths of my colon.
I always thought that by being an easy patient, by being obedient, by smiling and going along with whatever treatment or course of action they suggest, by making their lives easier in any way at all, I would get the best treatment. I thought that by taking their word as law they would treat me favourably. I always thought by being the quiet one on the ward, who waited patiently for her pain killers and didn’t complain even when she was being starved to death by the incompetence of hospital staff (or other horrifying things) that I would get treated favourably as they would want to come to see the quiet and polite young lady patiently waiting in her tidy bed, while all the other patients screamed, kicked-off and threw things around the ward.
But it is horrifying to admit that the exact opposite is true. It has taken some very rude wake-up calls, some terrifying moments and some horrifying scenes of neglect to make me realise that being an angel means nothing to hospital staff and medical professionals. A hospital, especially a ward, is like a zoo. The patients are like caged animals fighting to get back out into the wild. Forget about survival of the fittest, more like survival of the most tenacious, rude and obnoxious. If you want something done, changed, or even want to get out to the real world in one piece you have to become a pushy patient; questioning everything; chasing up every result; and playing as many mind games on the staff as humanly possible (like a child playing their parents against each other). You have to forget being a quiet little mouse, work on your roar and step in with the big boys – start thinking like a lion, or better still a cunning fox.
The sad truth is (this might not be in every case) the more awkward you are, the ruder, the more difficult, the more you turn into the patient from hell, the better treatment you get, and the smaller the chance of you being left to lie in your own faeces for days on end, until a member of your family kicks off on your behalf. And that’s only when you’re on the ward. As an outpatient getting anyone to take you seriously or managing to get the correct treatment means – I have learnt the lesson the hard way – that you should never just let your GI have the final say without questioning things, or demanding a second opinion. It’s more difficult with your GI, surgeon or doctor, as if you kick off all the time they simply won’t put up with it, you have to get them to want to answer your calls and put you to the front of the queue, but I have started to find that simply rolling over and taking their word as GOD you will not gain their respect, and quiet frankly I’m done with massaging people’s egos…this is my health, my life, not a boardroom.
Even monks have to go to hospital it seems
Up until my most recent hospital stay I’d been the ‘golden’ patient, helping old people to the toilet, getting nurses for people in pain, pressing the call button when the lady next to me sounded like she was having another heart attack. I guess I always wanted to make the nurses’ lives easier. I was horrified by how understaffed they were and realised how little time they had to deal with little things when there were extremely poorly people to tend to…I guess that was always ok until I was the incredibly poorly person, and I was still ignored and treated by the other patients as a member of staff.
Recently I have begun to question everything absolutely everyone involved in my medical care does. I guess after 13 years of managing my own illness I have had enough of being the ‘perfect patient’ when the people who I rely on to keep me alive are not treating me with the respect I believe I have earned. When they simply refuse to listen to me. For years I have agreed to everything, which I find odd as in my job as a journalist I never let anything go without asking 100 questions…but when it comes to my health I have always just agreed, even if deep down I have known that it is quite simply not the right thing to do (the exception here is surgery, it remains the only time I have downright refused to have something done).
Ok, I’ve not turned into a raging bitch, or a hospital diva, but recently my patience has run out and I think my medical team has noticed. My GP surgery, who have really
Odd looking test results which I demanded to have explained to me
shown their true colours since my operation (they are so incompetent it is unreal), only started to treat me with a ouce of respect last week, finally taking my red raw wound seriously after months of giving me the wrong dressings, ignoring my symptoms and refusing to give me appointments, choosing instead to diagnose me over the phone…and what did it take to get them to sit up and listen you ask…me getting so frustrated at the latest act of incompetency that I boiled over with fury and kicked off in the almost-empty waiting area. The result? I got the royal treatment, with the head nurse seeing me immediately and treating my wound there and then. And, due to that it is starting to get better…so I might have felt bad for getting peeved with the clueless receptionist, but I can now sleep a little better without being in constant agony.
At last week’s appointment with my GI specialist I was determined not to take no for an answer. Ok, so they didn’t help themselves by highlighting their incompetence when the receptionist produced two sheets of paper instead of my file, and then tried to convince me that those flimsy sheets made-up my entire file. No, my file is as thick as a thesaurus. When I asked my GI where it was she admitted it was lost, but not to worry my confidential information would be somewhere in the hospital and someone would find it eventually. WHAT!!! Obviously this was so ridiculous I had to laugh, but it was a wake-up call, one that said if you want to get things sorted and get these people to listen to you your going to have to start taking matters into your own hands. I did! I questioned everything, I pushed for drugs, I said that feeling mediocre was not what I had signed up for and that I deserved to feel better, and guess what, almost 40 minutes after my name was called I emerged with a procedure booked, an appointment for the gynecologist and joint specialist (have been trying to get referred for 7 plus years) and some new medication to calm down my remaining colon.
Is this the perfect patient? If so, why do they wake us all the time?
Ok, not everything is fixed, but it is a step in the right direction, and I have learnt a valuable lesson that if I want something doing properly I can’t just hope it will happen I have to be willing to step up and fight for it. The years of waiting patiently are over I’m fed up of being fobbed off, I’m ready to get in the ring and really get stuck in and battle for my fight to a pain free life.
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
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
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
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.
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
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 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!!!
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!!!
If you looked at me you wouldn’t know I had an incurable disease. I look like everyone else. Ok, maybe not exactly, I’m a
You’re ill?? You sure?
little (ok a lot) on the thin side, I’m often covered in bruises from millions of blood tests, and sometimes, if I’m lucky, you’ll spot me sporting a rather trendy hospital bracelet with my name on (in case I forget) and a gown that shows my bright red bum off to the whole world like I’m a baboon. Anyway, what I’m trying to say is that I’m not in a wheelchair; I don’t have to walk with crutches; I have all my hair; I have all my limbs; I don’t look a weird colour, pale or sickly; and I don’t have any disfigurements…so to the naked eye and to the world I’m not ill and I’m most definitely not disabled, which you would think would be a good thing right?
Most of the time it is! I am so grateful everyday that I can walk, jump, run, swim, and that I have the freedom to do the things that I want to do without being confined to a wheelchair..and I have to add that I have all the respect in the world for those who aspire to amazing things despite the preconceived limitations of their disabilities (aka ParaOlympians). But just because you can’t see my aliment it doesn’t mean it doesn’t exist. As a Crohns/Colitis sufferer I don’t want anyone to treat me differently, but I don’t want to have to walk around waving a sign saying “I’m ill…honest!” just so that people will let me into the disabled toilet without shaking their heads and muttering “how disgraceful, how dare that young woman use the disabled loo…there’s nothing wrong with her”, or maybe let me sit down on the bus when I’m obviously about to collapse through the effort of trying to stand up.
So as a long-term sufferer of Crohns/Colitis (still don’t 100% know which one, they’re now leaning towards Colitis) here are my confessions:
Before the op smiling as ever, but seriously ill!!!
I know I’m a positive person. It’s a skill I have moulded from years of crippling pain, disappointment, broken promises and self hate. For most of my life I have lived a lie that has been so bloody convincing that I don’t really know what’s real anymore. If you were to meet me you would see what everyone else sees – a confident, happy person, who never gives up and never lets anything get her down. No matter how much it hurts, no matter how much I want to scream in pain, no matter how bad your horrible judgements because of my skinny frame or endless toilet visits, no matter the blood, injections and fatigue, I still manage to plaster a smile across my face.
You could spend all day with me and never notice that I am holding myself together with a tiny string of energy that is fraying and threatening to snap at any moment. I spend every day as a different person, a determined person, a workaholic, the sort of person who would never let anyone down, who won’t quit until the job is done and who gives everything 110%. I’m like a whirlwind in the office, and I guess my pet hate is lazy people. I never stop, my energy to others seems unrelenting, and my positivity in the face of so many issues seems to be endless. But inside I’m screaming as my body eats itself alive. If you were to look closely maybe you would be able to see the pain in my eyes, perhaps behind my blue eyes everything is empty? Perhaps if you stopped and really looked at me, pushed aside my over-the-top laughter, thick make-up and endless chattering, you would be able to see me my hands twitching with pain from arthritis as I attempt to scribble down an interview, or the way my body twitches as pain rips through my bowel or the deadness in my eyes as I try to cope with the face every morsel of food I ate for the past year has just ended up in the toilet bowl again.
Smiling so much can hurt. Living a lie every day takes a lot of energy and being positive when so many things are quite frankly shit is just draining. I don’t let many people see the real me. I guess I’ve never liked her. To me the real Rachel is ill all the time, she is weak, she is sick and she is not worth bothering with. The real Rachel is the person who crawls into bed and gives in to the pain and the fatigue. She is the side of me who throws up food quicker than it’s cooked. She is the person who is afraid of social events where people will see how little she really eats. She is the person who lives in track suit bottoms and baggy t-shirts, is covered in bruises from endless blood tests. She is the person who knows that feeling well will never really last, that the treatments will never really work and that it’s just a matter of time that my illness will kick off again.
That Rachel is the one I become on the night’s I arrive home alone, she is who I become when I unscrew that positive grin and put it to bed on my nightstand every night.
You could say there are two versions of me. There’s the Rachel that people see in public and then there’s just me, bare, naked and exposed. That’s the person people see when they visit me in hospital covered in wires and trying to hold back the tears. So now you know why I always want you to call ahead if you’re visiting – it’s so I can transform into the better Rachel, you know, that positive person you all know and love. She’s not for me…no, she’s for you.
Well she used to be….now the lines blur. I’ve been living this lie so long I might just be starting to believe that I really am as determined, hopeful and positive as she is every day.
Why am I confessing all this? I guess it’s because of what happened yesterday…
Yesterday I woke up full of hope, questions and enthusiasm, ready for my meeting with ‘Mr Miracle Hands’ my
TRENDY
life-changing (I may as well say life-saving) surgeon, whose amazing handy-work brought Winnie into the world and banished some of the evil disease that has tormented me for the past 13 years. I was almost excited to see this ‘wonderful’ man, who I hoped was going to be full of answers and solutions to some of the weird problems I have been experiencing since my Ileostomy operation nearly 12-weeks-ago. I guess I thought that he would be able to snap his fingers and every issue would just vanish in a puff of smoke, that he would smile sweetly, say “don’t worry it’s all over, you’ve suffered for long enough and that’s it.. you can live your life now. We will fix you and from this day on your only worries will be whether your bum looks big in an outfit or which weird combination of coffee, milk and syrups to order from Starbucks”. He said some things, but to my disappointment it was nothing along those lines.
I guess I should be grateful, since the operation I have felt better than I have ever felt – well, that is, ever since I can remember. The crippling pain that caused black-outs, screaming ‘kill me now’ in public bathrooms, and left me literally crawling up cubicle walls, is gone. But it has been replaced by something else…something so much further down the scale that most of the time I don’t even notice it, but it’s still more pain than most people could deal with on a daily basis. You see the complications, the infections and the scar bursting open following my life saving operation have left me with more problems than before. I was used to the old problems caused by UC/Crohn’s, but these are new, alien and confusing problems and pains that, honestly, I am finding bloody hard to figure out.
My hope had been the ‘miracle hands’ surgeon was going to have all the answers. My hope had been he was going to say “let’s take out that remaining bit of colon, I should never have left it in, it is far too diseased”. I hadn’t expected him to take it out there and then, but I had hoped it would be soon. When he cocked his head to one side like a sad puppy and said ‘at least six more months’ or ‘possibly never’ due to scar tissue, complications and risks, I have to admit something inside me died. I think the little flame of hope of living a totally normal life flickered and gradually burnt out. Obviously, me being WELL ME, I didn’t burst into tears or throw the all mighty ‘it’s not fair’ tantrum (believe me I wanted to), I think I made a totally inappropriate joke or laughed. In fact I even carried on doing it when he peeled back my wound dressing to reveal a very sore and oozy patch of skin that was like a scene from Alien, and expressed his horror that I’d managed to put up with such pain in the sweltering heat! I even made a joke when he declared he would have to put a THIRD stoma bag on it to drain the never-ending stream of puss:
ME: (something along the lines of) “ooh so your adding another tool to my tool belt!!!” (I’m sure he saw through my little act, I know my mum does (she always has)…
My three bags and some very sore skin
Anyway I couldn’t believe it A THIRD BAG!! I didn’t sign up for this. I signed up for just the one, when I signed that consent form and allowed this man to hack away at me I was under the understanding that their would be no complications. he would simply whip out my bowel, fit me with an ileostomy and that would be that…BUT NO!!! I should have known, I really should, nothing I ever do runs to course…my body screams DRAMA QUEEN!! I even joke to my surgeon that I am the most dramatic patient he has ever had – unfortunately he agrees! I was so desperate not to get another bit of plastic bagging attached to my skin that I wholeheartedly agreed when he said the only other option was to stick a knife in the over-granulated scar tissue and drain out the puss! Anyone passing the room at that point would have thought he was offering me a package holiday by the OH YES, FANTASTIC, PLEASE that was excitedly coming out of my desperate mouth. unfortunately he refused to do that, and I found myself whisked to another room, nurses buzzing around me, sticking one bag after another to my skin in an attempt to find one that wouldn’t make me look like Michelin Man once I had my tshirt back on.
Anyway, back to the surgeon. I quizzed him on everything. Now that they had my large bowel did they finally know what I had..surely they did? The truth was, after looking at the results he still couldn’t tell me 100% if it was UC or Crohn’s. He confirmed the results ‘swayed’ towards UC, but that it looked like they wouldn’t 100% know until they removed the rest of my colon, then it would be a waiting game to see if the disease attacked my small bowel…if so, it was Crohn’s Disease. What a fun game 🙂 I can’t wait to play that one, maybe we should put bets on it!
Hmm hope all this isn’t for forever
By the end of the appointment I had been called brave, tough and a ‘good coper’ – I didn’t feel any of those things. It must have shown as at the end of the appointment, as I was being whisked off to get my third bag plastered to my ever-growing tool belt, the surgeon grabbed me in a big bear hug and held onto me like I was being taken off to die. He told me how brave I was, how well I was looking, and how much I had been to stay so positive despite what I had been through. It was awkward but nice…despite everything that has gone wrong, the wonky epidural, the split-open scar, the infections, I would still, if I had to, trust this man with my life (even if he is a bit touchy-feely and holds my hand during appointments).
And after all this crap what did I do? I didn’t go home and cry did I NOOO!! I went off to the beach with my parents and pretended I was happy as larry about the whole thing…and because I did I had a really nice day. But today as I ring the specialists and surgeons for the 10th time and get “ring the other team” or an answer machine message, as I desperatly try to force them to put me on meds for my remaining colon, which is becoming more and more diseased and painful by the minute, I am feeling desperatly low and upset.
Me smiling at the beach
I guess I have figured out, finally, that I’m really bloody ill and a quick-fix operation is not going to cure me. I’m frightened. Frightened about what the future holds, about my health and the impact it will have on my life, about future surgery, about more time off work. The truth is that despite my happy face, quick wit and go get ’em attitude in life, underneath it all I am bloody terrified.
And you know what???? That’s ok, I’m allowed my bad days.
Yesterday me and Winnie celebrated our 10-week anniversary. But, because all I remember about the day the surgeons ripped my once flat stoma open and tore my poor and battle worn colon out, is being dopey and drugged up and feeling the sort of pain and soreness that you would expect a person to feel when a major organ has been ripped out of their body, I tend to think of the day after the op as the first real day me and Winnie spent together.
So true!!!
A lot has happened since I woke up groggy from the massive dose of anesthetic and realised that my worst fear had finally come true – my once flat stomach had been torn apart and a giant pink stoma was now erupting from the surface. Me and Winnie have been on a lot of adventures together, faced horrible challenges, snuggled up in sweat pants with hot coco when we’ve not been feeling well, and have had some God awful ‘I hate you so much’ fallings out.
I’ve struggled to accept her need to constantly make embarrassing farmyard noises in totally inappropriate situations, while she has put up with my inability to stay away from foods that make her sick (I promise you not matter how much you hate it, I will always eat loads of spinach, even though you spit it out whole). I’ve put up with her non-stop attention seeking and ability to fill-up faster than the speed of life, while she has struggled to keep up with my stubbornness and inability to put my feet up and just rest.
We go together like Brie and Bacon
We have had our highs and lows. Ok, more lows than highs at the moment, but just like any long-lasting relationship at first you have to learn to put up with each other. After living for 25-years with my colon, I now have had to get used to life without one of my major organs and accept Winnie as an alternative to using my arse to go to the loo 🙂 it has been a major learning curve, but one I have got used to and accepted a lot quicker than I ever thought I would.
Now that 10 weeks have passed I thought it was about time that I showed you Winnie. I mean I’ve been telling you all about her, praising her and bitching about her for the past two months, and I, very rudely, have never introduced you to her. Now to everyone who said they wouldn’t read my blog if there was anything gross in it, I apologise, but even though she sometimes (well a lot of the time) does gross things, Winnie is NOT gross…she is totally natural, and I would still be seriously ill without her. So here she is. My surgeon and stoma nurse say she is perfectly formed, and she is 🙂 n.t I’m sorry about all the scars and how yucky they look, but if I wait for them to heal without showing you Winnie we could be waiting for years!
So here you can see Winne, Oscar (who is poking out of my stomach and causing me all sorts of problems at the moment) is the one who looks a little like a second belly button or thumb print, and Felicity the fistula. You can also see my very itchy scar from the operation, surrounding my almost non-existent belly button, which has been swamped by the itchy rashes caused by plasters, adhesives and dressings. I thought I would always hate this scar, and at the moment I do, but I know that I will grow to accept it in the end – well hopefully.
Winnie the very temperamental stoma, released for good behaviour for a minute or two
Winnie is pink, problematic, has a split personality disorder, and is 25mm big (which is a hell of a lot smaller than she was when she first came into this world). We have days where we hate each other, but you know what she has saved my life, and she is a small price to pay for a life without the crippling pain of Crohn’s Disease.
I didn’t show you Winnie before because I was scared to. It sounds silly now but I have been dreading this post, and even though I wouldn’t want to admit it I was putting it off. But now I have show you her I can’t understand why I was making such a big ho ha about it. So, say hi to Winnie world!
As you all know, before I was forced to have my emergency ileostomy op I was scared, well shitless, about the idea of having anyone go near me with a sharp knife to slit open my poor skin – I won’t go into how terrified I was about the idea of having a stoma, or we could be here all night! I guess I never thought I would be sat here showing the whole world a picture of her, I didn’t think I would even be able to look at her.
And here she is looking very sore from the hot weather 😦 I’m sorry Winnie – not her best look
Despite the fact I had narrowly avoided having the surgery many times before, in the days before my operation 10-weeks-ago I may have accepted the idea of having an ileostomy bag but, I have to admit, I was still bloody terrified about having a stoma. After drawing those little x-marks-the-spot marks on my then flat and untouched stomach, and chatting to me about sizes of bags, accessories and all the other fun things that as a fashion mad lady I would usually love to hear and chat about (not in this situation tho), my lovely stoma nurse Maria gave me a pre-ostomy reading and prep pack.
This was just two days before the surgery, so there was no backing out. The slot was booked, the surgeons prepped, and my bowel was rapidly disintigrating…so, really there was no backing out of it. So I opened the pre-op pack and started devouring the literature in an attempt to get myself ready for my new arrival. All the shiny coated booklets where filled with images of happy smily people drinking coffee and taking bike rides in the sun and they were eating all the time! I mean, what’s with all the eating? Nearly every page was filled with images of either shiny-grey-haired pensioners laughing over orange juice and croissants, or smiling families tucking into picnics on sunny lawns…all the booklets seemed to be telling me is YOU CAN EAT ANYTHING WITH AN ILEOSTOMY!! And that really wasn’t the reassuring message I needed….it all seemed really over-glossy and fake, I needed something real, a picture of someone who was just, well like me.
My stomach the night before my operation – wish i had never taken this it makes me feel sad to look at
What I needed was maybe an extract from someone’s blog, the real truth about how someone my age would feel after such a major operation, you know WHARTS AND ALL! I think if I could have read something honest, someone who said they had also felt really frightened, and that it hadn’t been all plain sailing with their ostomy but that it had been worth it in the end, that would have been a great help… so if you’re reading this and you’re from one of the pharmaceutical companies please, please, please think about putting in some honest stories from young people, instead of just filling those brochures with fake, plastered on smiles which wouldn’t look out-of-place in a pension or life insurance commercial.
Me with all my gadgets – my utility belt 🙂
Anyway, anyway, anyway, inside this pack there was a fake stoma and a bag, so that you could basically give-it-a-go, sort of try it on before you buy kind of thing. It wasn’t an enjoyable experience but I attached the fake squigy foam stoma to my marker x, filled up the bag with water from the communal tap on the ward, and attached it to my stomach. Then, according to the booklet, I was meant to walk around with the bag attached to me for a couple of hours to get used to the feeling of wearing it all the time, but it was just too heavy and uncomfortable, and the first time I emptied it, it made me feel so emotional that I started to cry as the water gushed from my stomach. So I took it off…I just didn’t want to have to deal with it until after the operation, when I guess I wouldn’t have a choice.
Cutting all my new manuka honey bags 🙂 thanks Charter 🙂
What was worse than that was I had realised that I didn’t think I would be able to deal with touching and changing my stoma myself. I was really worried that I wouldn’t be capable of it, that for the rest of my life a nurse or a friend would have to deal with her. This was because when I was reading the literature I couldn’t look at the picture of the stoma…to me it looked pink, gross and slimy. A bit like a willy or worm sticking grossly out of someone’s stomach..and this one was a perfectly formed, no stitches, no poop, no blood stoma, so how was I going to be able to deal with mine post surgery? I did, but that is a different story, for now I want to tell you that I put my hand over that horrible picture and wouldn’t look at it even when my nurses tried to get me to.
I even took a picture (see above) of my stomach the night before the operation. I guess it was a souvenir picture so that I could always remember what my stomach looked like before the scars and the stoma. You know, something to show the grandkids and all that. I wish I had never taken it, and have deleted it off my phone, as I was spending too much time looking at it and feeling sad.
But now, as I show you this picture I know that I am 100% fine about having a stoma. I feel fine about the idea of having Winnie for the rest of my life. I mean, if that means a life without the crippling pain of Crohns, the constant toilet visits and the inability to follow my dreams, or even nip to the shops for fear of having an accident, having a little pink lump on my stomach that occasionally farts in public is a small price to pay.
Over the past few days I have been finding it really hard to stay awake. I honestly can’t seem to keep my eyes open for longer than around an hour at a time. While I am finding this frustrating, and, if I have to be totally honest, a little worrying (this was what was happening before I went into hospital for surgery), it has undoubtably led to some rather amusing situations which even I can’t help but laugh about.
Oooh pretty flowers
I have fallen asleep in packed hospital/doctor’s waiting rooms; on toilet seats; while watching TV; in coffee shops; while on the phone; in cars and, most embarrassing of all, when people are talking to me! I have even fallen asleep mid-sentence and woken-up half-an-hour later thinking Where Was I?? – I know…you couldn’t make it up!
In fact on Wednesday I became so concerned about my unpredictable slumbers that I decided it was high time that I gave in and went to the doctors to find out what the hell was going on with my worn-out body. I mean, I am obviously either dehydrated or lacking in some sort of vitamin or mineral which helps make it possible for normal people to not fall asleep every 10 seconds…imagine a world like that, trains would crash, bank robbers would be found leaning against safes with dribble pouring down their faces and bags stuffed with cash having a little snooze, and the Prime Minister would be found sat at the desk in No 1o with his slippers on, cuddling a cute teddy bear called Maggie and snoring into a mountain of red boxes while chaos erupted on the streets below. I mean nothing would ever get done, would it?
Trying to watch the tennis but drifting off
While sitting in the waiting room, which was packed with screaming kids with snotty noses and old ladies with bad hips, I started to feel that awful tiredness coming over me like a wave. Feeling my eyes starting to drop, I pulled my Kindle out of my handbag and tried desperately to read this week’s book, fighting with every tiny ounce of energy in my tired body to focus my vision and stop the words blurring, bouncing and leaping across the screen. I must have read the same sentence twice before my head dropped and I fell fast asleep, probably snoring and making slight purring or snorting noises similar to those you would normally hear in a farmyard or coming from a pigsty, and undoubtably dribbling and pulling some sort of horrendously embarrassing face (hope those pics don’t turn up on the internet). I woke-up around 20 minutes later after, much to my surprise, a sheep (I don’t know why a sheep) in my dream started calling my name! Even though I was dreaming I knew that something wasn’t right about this as; a) this sheep didn’t have a starring role in the dream; b) sheep do not talk; c) my name sounded like it was being called from another world, it had an echoey shouting underwater quality to it, which just didn’t sound like it was coming from inside my pleasant slumber world. I woke up with a jerk, pulling my dribble stained hand away from my cheek, to find the not-so bad-looking doctor (it had to be him right #typical) leaning over me calling my name, with a strange expression on his face, which I could only interpret as somewhere between amusement and disgust!! I wouldn’t say I have never been so embarrassed, as that would be a lie – I have had tubes shoved where the sun doesn’t shine by doctors who resembled Brad Pitt ( not the ideal first impression for any girl to make) and been stopped in the street by crushes and butter wouldn’t melt almost Calvin Cline underwear models for directions or an annoyingly long conversation, knowing that any minute I’m going to have a poop related incident – but I have to say that I must have looked shocked and humiliated as I staggered towards his office, no doubt with my hair stuck to my face by drool and a tell-tale red hand-shaped-mark imprinted into the side of my face. THE SHAME!!!
According to Doc I wasn’t dehydrated as my tongue didn’t look dry (don’t ask how he
Ohhh another smelly pressie for Winnie
came to that conclusion), he didn’t think I was lacking in anything serious as I didn’t look ill and my blood pressure was ok (saying that it was its normal abnormally low self) and I had an average temperature. He put the whole thing down to exhaustion and my body trying to heal itself following the loss of my bowel…which, he at last enlightened me, had been all torn out apart from the tiny and problematic rectal stump. But just to be on the safe side, and because he is a rather thorough doctor, he had a feel of my poor tummy, and prodded at a protesting Winnie, who at that moment, in what I decided was an OY! HOW DARE YOU TOUCH ME!! protest, decided to gurgle and erupt some fresh, warm poop into her freshly changed bag, before letting out a series of hideously loud and obnoxious farts – thank God he hadn’t taken the bag off!!!
I then had to sit in an uncomfortable state of silence and intolerable embarrassment for the rest of the appointment while he rang the hospital to arrange a blood-test and tried to get hold of the IBD nurse to change my medication, so that poor Winnie would no longer have to spit out the giant horse-tablets whole every day.
All I can say is that I was relieved to get out of that tiny room…and, I am 100% sure he was glad to see the back of us both.
Up set and drenched in town meeting a friend after doctors humiliation
I have had to tell Winnie off multiple times this week. She has spent the whole week thoroughly disagreeing with everything I eat, drink and so much as look at or think about putting in my mouth. I’m honestly starting to think that she enjoys testing me, and is trying to see how far she can push me before I race to the hospital screaming TAKE HER BACK, I’VE CHANGED MY MIND, GIVE ME A DIFFERENT MODEL. And, before you say it, I know that having a stoma is not like owning a car, and that I can’t take her back and exchange her for a soft top if I don’t like her after 21 days, but did I have to get stuck with such a madam?? I’m honestly sure that most people don’t have this much trouble with their new friends 😦 but mine is a total character, she doesn’t seem to know if she is coming or going, happy or sad, fussy or not fussy, working or refusing to in protest for some totally unknown cause.
Take for example yesterday, which was Winnie’s annual changing day (she get’s changed
Winnie, Oscar and Felicity post nuclear explosion in bathroom
every other day, so she is always clean and fresh and looking her best). I was halfway through changing her, I had cleaned and dried around her bottom and had smothered her with special barrier protecting cream so she didn’t get red and sore from the adhesive Flange (horrid word YUCK), and had decided, just for a second, to take my attention off her and move onto cleaning my wound and washing out Oscar (my remaining colon poking through my stomach #nice!), when she decided to have a totally paddy to really p**s me off and get my attention. Without warning she started convulsing, her entire pink, plump body started moving in and out like it had a life of its own, and then suddenly she erupted everywhere, spurting fountains of fresh, smelly poop all down my leg and all over the bathroom floor. PANIC STATIONS. I grabbed layers of tissue, and, basically anything else I could find and desperately tried to plug the leak, but nothing wanted to stop her, she was on a roll and was determined to teach me a lesson for ignoring her!! It was total bedlam, and when it was over, and she allowed me the few seconds of ceasefire to clean her like a little baby and nestle her bag in her bag – well, I pretty much stuffed her in, in an attempt to teach her a lesson – I collapsed in a heap on the bathroom floor before finishing the job by putting on my dressings and having a much-needed wash and clean-up of the crime scene.
A slightly steady moment at the castle..felt like a princess
She also had a major paddy on our day out with the folks to Cholmondeley Castle on Thursday. The plan was to go out to the castle’s grounds for the day to look at the pretty flowers and enjoy a scrummy picnic on the manicured lawns. And that’s exactly what we did, but not without Winnie and my exhausted body trying to add some much UN-NEEDED drama to the occasion. We arrived at the castle after I had fallen asleep mid-sentence while talking to my Mum and Dad in the car…I think I had been telling them about a lovely offer I have had from an amazingly generous person to pay for one of my more expensive challenges, when, totally out of the blue I fell fast asleep half way through a sentence. It was something like “I just can’t believe he would do such a….zzzzz”!! My poor parents must have been totally bemused and confused as to whether to wake me up, let me sleep, or drive me straight to the A&E department and have me admitted for weird sleeping patterns and inability to stay away even when talking.
Anyway, anyway, anyway. We arrived at the castle – well they arrived and I sort of dozed
A very windy picnic with the Flints
into the land of the living as we approached the massive estate – got out of the car and started to walk around the stunning gardens. As we got just about far enough away from the car, in the middle of exploring some gorgeous rose beds, with me trying to take professional style photos of various multi-coloured roses with my not so professional and rather knackered camera phone, I suddenly realised my legs didn’t want to behave themselves anymore. My poor legs appeared to have acquired a life of their own (Micheal Jackson stylie), and were suddenly refusing to take my body in; a) the right direction; b) anywhere that required them standing. They appeared to be buckling under the simple pressure and decided to trip me up and make me stumble all over the place, almost sending me tumbling into thorny rose bushes and making me look like an overgrown toddler trying to advance from crawling a week or so too soon. My poor reliable Dad seemed to spot my problem almost from the word go and hastily rescued me from landing facedown among the rose bushes, hooking his arm under mine and sticking by the side for the rest of the day, in an attempt to stop me costing millions of pounds of damage to Lord and Lady Cholmondeley’s extravagant flowerbeds. I will be eternally grateful.
Me and the pretty flowers
If it wasn’t bad enough that I appeared to have lost control of my limbs and was walking around the grounds in a zombie style trance, barely managing to keep my heavy eyes open, Winnie decided that she had been ignored for long enough and decided to have an almighty paddy in the grounds public toilets. After years of suffering from Crohns I have a massive dislike for public toilets, but I am also always eternally grateful that they exist to help save me in my frequent moments of desperation. I hate how dirty and unkept they are, and that there is always the risk that you could be attacked by a random drunk/drug dealer hiding in one of the unlit cubicles, and that entering a cubicle is like playing chicken or guess who…you never know what will be behind the door or under the toilet lid SURPRISE!!! (yucky, ewh, I feel sick even thinking about the revolting things I have seen, why do women do that in toilets?) Anyway I ventured inside these outdoor toilets, which were not really that bad as far as public loos go..they had toilet roll which wasn’t strewn all over the place, and there was nothing nasty floating in the bowl (puke!!). I went to empty Winnie to find, horror of horrors, that the loo roll was in one of those health and safety round containers, and for the life of me I couldn’t find the end of it to pull down! So I stood there holding Winnie’s end with one hand and frantically searching for the end of the roll with the other..it was frustrating and by the time I had thankfully found it, I will leave it to your imagination, but it took a hell of a lot longer to clean her up than it would have done had that flaming protective cover not have been there!!!!
Yes, I know that wasn’t Winnie’s fault and it’s unfair to blame her, but for the rest of the
in the garden enjoying a few rare rays of sunshine yesterday before Murray mania
afternoon she threatened to kick-off whenever we ventured more than a metre away from the only loos in the hundreds of acres of grounds. She did it during the picnic, and I continued trying to eat my tea and grab bits of food and cutlery that kept being blown away in the wind, while feeling her swelling into a gas-filled balloon under my jacket. While we were looking at the weird and wonderful petting zoo animals, and even on the way back in the car where I thankfully fell asleep two seconds into the journey so didn’t notice her constant tantrums or the horrible bumpy Cheshire roads.
When I got home I raced straight to bed and slept for a lovely few hours 🙂 it was bliss, until Winnie woke me and insisted upon being changed again following her first slight leak, which was caused by the bag lifting up slightly in the heat I think. Which I handled much better and more calmly than I thought actually. I then had to dress her in the first bag I have ever cut for her, having run out of the ones the Stoma Nurse had cut…this was a nerve-wracking experience..lets just say I didn’t have much confidence in my own cutting abilities and accuracy and spent the entire sleepless night checking her for any sign of leakage or damage caused by her collar being just too tight.
Oh and before I forget, I spent the other evening, after lots of messing around not being able to find each other (first time I had used Skype) talking to a lovely lady across the pound about my life with Crohns for a book she is writing. It took forever and there were a few awkward moments, and hilarious moments where I think we just didn’t understand each other…she even called my accent lovely 🙂 HMMM!! Anyway when we eventually finished at midnight (there had been some confusion over time differences), I sat in bed unable to sleep worrying about exactly how much of my life I had spilled to her during the interview. And faced the horrible reality that this is how it must feel to be on the other side of the journalist’s notebook…a rather worrying feeling of hmm should I have said that. But, hey ho, if it helps others to come to terms with their disease I don’t care if they hear about my shameful poop accidents!
Moving on to my first BIG Bowl of cereal…before today eating out of tiny bowls for kids
Anyway, that’s enough moaning and rambling for one day. I will be gutted when Wimbledon finishes this weekend, as despite the fact that I have been falling asleep at the worst possible moments (tie-breaks and match points) during Murray’s matches I have throughly enjoying screaming at the telly and watching my boyfriend transform into a madman, screaming and calling the poor tennis player all sorts of horrible unnamable things as he throws himself around the court in an attempt to make us all proud. He really can be a twat when we are watching sport (sorry babe), but it is funny to watch 🙂 I’m sure it’s just being passionate about the game, well that’s what he tells me.
So now I’m going to go back to writing my complaint to the hospital regarding my recent stay, where they tried to poison me by constantly trying to feed me lactose, cripple me with a badly placed epidural and basically left me wasting away, depressed, in pain and confused. As I don’t want to bore you so I have done a mind-numbing video about it which you can watch below.
A blog about living life with an Ostomy. How life goes on and how wonderful things can be achieved. It is also the perspective of a 30 something woman and life in general!
The big stoma bucket list 