You tore out my colon, now you want to dump me. Please don’t leave me this way! – a plea to my gastro team


I‘m so sorry. It’s been a ridiculously long time since I wrote my last post. It’s just been so chaotic since we last spoke; with going back to work; enjoying the sunshine; attempting – and failing – to write a novel; and keeping up with my friends and family. It feels like every weekend me and Andy are maniacally busy, and every evening is spent just trying to relax enough to sleep before my next day in the office.

Going back to work on phased return is always difficult: especially in the media industry. It’s hard to just stop as the clock ticks past your allocated time in the office. I’ve always found the ‘return to work’ period hard, but this time I’m finding it an even tougher process. I’m starting to think it’s because I have so much more energy than last time. I mean I have no colon any more so most of my symptoms have now miraculously vanished, leaving me feeling relieved but wondering what new pain is in store for me around the corner.

I think I’m now going to spend the rest of my life wondering when the remainder of my digestive system is going to pack in.

On that note, I got a worrying letter from my IBD consultant the other day telling me they were going to discharge me from their care. Apparently because I have a permanent ostomy bag I no longer have Ulcerative Colitis. I almost fainted from the shock. After almost 14 years under the care of a gastro department at one hospital or another, I can’t imagine life without my specialist. The idea of it absolutely terrifies me. I think it would be unwise, especially as there has always been the underlying query about whether I have Crohn’s or Colitis, to discharge me, for me only to need their help in a few months time when things start to go to pot ( or down the drain ) again.

Imagine if they discharge me from their care and then it turns out it actually was Crohn’s, then I’d have to go through the agonising process of being referred by my GP all over again. I absolutely refuse to take my foot away from that very jammed open door. Surely I’ve earned to stay on their radar after everything I’ve been through.

I take issue with the fact I am cured of Ulcerative Colitis. Why, you ask? Shouldn’t I be throwing a party with gangs of people wearing “She’s Cured!” t-shirts and giving speeches on how grateful I am to be free from IBD. I just don’t agree with the word cure. I may no longer have the organ which caused me all those problems; I may no longer have to live in agonising pain every minute of every day; I may no longer be chained to the toilet stall – but I still have problems caused by years of disease, toxic drugs and sleepless nights. In my opinion I will have Ulcerative Colitis until the day I die. This disease has taken the best part of my life away from me; ruined relationships; holidays; career opportunities and cast a massive shadow over every little moment of the past 14 years. It has left me with riddled joints, osteoporosis at 26 and an intolerance which makes it almost impossible to eat out.

Oh, and am I forgetting something, it cost me my colon.

So, I’m sorry Gastro department I refuse to let you fob me off with a “your cured” tactic. I am healthier and happier than I’ve ever been in my life, but I still have pain; skin problems; digestive issues and agonising joints. I now have an ostomy bag and life is not always peachy: what if I need someone to help me with that? After years of being under the care of so many different teams, it makes me feel anxious to think I might soon be going it alone (which in reality I have been doing for years), with no way of knowing what is normal, and having no medical professional to call on for support.

Please don’t try to dump me on the surgical team. While they may be hot (some more than others) and incredibly attentive, they are not willing to keep me on their books unless I need future surgery – and I’m not willing to part with another major organ just to keep seeing the registrar, he’s not that hot!

 

 

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Enhanced Recovery Programme – the NHS OLYMPICS – are patients being sent home too soon?


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I’m writing this from my hospital bed feeling pretty fed up and low. Last time I wrote my recovery from my operation was going unbelievably well – I guess what they say is true, “if something is too good to be true, it probably is.”

I was readmitted on Thursday morning after waking up the whole block of flats (well probably) at 5am screaming and crying out in pain. I hadn’t been feeling awesome for a few days, but I knew straight away I probably shouldn’t have been experiencing that much agony as part of the long healing process. But I really didn’t want to go back to hospital; I’d had a taste of freedom – well of the tiniest bit of fresh air and being in my own bed. My recovery had apparently been going in leaps and bounds and I simply didn’t want to give that all up and be back in my hospital bed cell.

Eventually my parents persuaded to get it checked out and I went tearfully to the hospital and reluctantly agreed to be admitted. And a good job I did. The pelvic pain was a collection of fluid which had gone septic. No wonder I was in agony. Now almost a week later I’m bored out of my brain, drained, exhausted and about to start climbing the walls of the ward, and can’t quite believe this is happening again after last year’s nightmarish post surgical mishaps.

But it really does raise a question about whether I was sent home too soon. From just hours after my surgery it felt like I was dragged out of bed, paraded around, led up and down stairs and faced with endless plates of mince and mash. The enhanced recovery programme seemed to be trying to train us all for some sort of NHS Olympics in less than a week. I went from having my stomach sliced open to climbing my own little mountain (well 20 steps) in a matter of days….if someone had told me that before the op I would have said there was more chance of an elephant flying to the moon.

Having had surgery before I was lucky (in a fashion) to know around about how much pain to expect. But really how do you know what is normal healing pain and what’s something going wrong? In the weeks after surgery infections are more common and problems are be likely to occur, so what are you meant to do if you don’t know – go to hospital like me or ignore it and hope it goes away (like I almost did). My excuse for considering ignoring it was not only that I couldn’t stand the idea of loosing my little island of freedom, but I simply thought I’d done too much – walked to far, strained myself etc – luckily my parents weren’t as sure or god knows what sort of a mess I’d be in now!

Being readmitted is a hard thing to come to terms with. I guess it’s like an on the run prisoner being bundled back into a cell after a few days in hiding. Whatever freedom and comfort you got from being at home, eating your own food, being surrounded by the people you love, watching your own TV, sleeping in your own bed, is cruelly snatched away from you. You’re flung back into the world of 24/7 bleeping machines, sleeping next to strangers, hospital food, stale air, needles, wires and tubes all over again – but this time with simply no idea when you might escape.

For a few of these days I’ve struggled to contain my tears. The staff (nurses, consultants and doctors) are lovely and kind but I just want to go home. I tasted freedom and it tasted good, but now I’m back with a drain hanging from my intimate parts which I have to carry around in the hope if draining all the badness out if me. I’m on antibiotics and I’m feeling better, but I may gain my health but loose my mind if I dint get out of here soon and get back to my small home cooked meals, comfy bed and hugs from my worried boyfriend.

But more than that I’m worried all this might happen again. If I’m discharged tomorrow how do they know I’m truly ready? On Monday my BP, temp, bloods were fine…I was in pain but not agony and my scar was healing well. There were no signs of problems, I looked amazing, they said after such a “serious operation”. Now I’ve been back into theatre for drains, pumped full of antibiotics and lost even more weight, does that mark me in a better or worse position than before. My wound has slightly burst where my fistula used to be – a moment that sent me into a panic attack, crying and upset the whole scar was going to explode like last time – so far so good.

I’m keeping my fingers crossed for home tomorrow – if not for my sanity but for the people around me. I honestly don’t think I can hold myself accountable if I have to eat one more of these meals or be woken up again for BP or by screaming in the middle of the night.

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Post festive blues – an over zealous fistula, too much pudding and impetigo


It might be three days after Christmas and most of us are finishing off our turkey and drowning in the reality of eating far too much sugar, fat and general stodge, but I’m determined not to let Christmas go. I don’t care if it’s days after the real event, I just can’t seem to accept that Christmas is over. It was over far too quickly for my liking. There wasn’t any snow, just rain and wind, and there wasn’t even slightly enough carol singing to satisfy my never ending need to sing loudly and off-key while jumping around like a teenager.

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This year I want to make up for all those years that Christmas has just been another meal to try and sit through while my IBD kicks off. I want to get back the Boxing Day spent in a gastro ward with prisoners (literally) keeping me awake while bagging their handcuffs against their hospital beds and feeling like curling up in a ball and dying as a Scrooge-Esk nurse places a nil by mouth sign over my bed (I swear with a naughty twinkle in her eye, as if saying no more turkey for you) before racing off to tuck into the giant mountains of chocolates at the nurses station! Post Christmas has always meant two things – regret that I didn’t squirrel away more food for my enforced fast and an insane longing to be left very much alone.

Right now we are smack bang in the middle of that period where I never have any idea what to do with myself. It’s that bizarre period in between Christmas and New Year where all you can really do is: a) eat yourself into a new dress size; b) join all the other manic people and hit the shops. Today we tried to hit the shops. I won’t be doing it again. Firstly I seem to have caught a cough that makes me sound like I smoke 100 fags a day, my impetigo is back in my nose making me feel like I’ve tried to stuff burning coals up my nostrils, and my fistula is going mental. I just couldn’t cope in the crowds, I felt like I was going to have a panic attack. Indeed I felt the normal hot waves and flushes of panic I get when my Crohn’s/Colitis is about to have an incident. I tried looking around the shops, fighting the old woman hogging the Warehouse rail filled with dressed far too tight and young for her age, but ended up tensing my butt cheeks so hard to stop an unexpected escape of bloody mucus I must of looked like I was trying to crack a nut. I was determined not to loose sight of the dress I wanted to grab and not miss it by racing to the loo. I would have won the dress with my constipated elf impression too, if I hadn’t felt like I was going to pass out, and, due to my butt squeezing exercise, the hot mucus started to squirt out through my fistula causing me to almost double over in pain….hobbling out of the store I must have looked like id been punched in the stomach and kicked in the shins during a bargain bust up.

I think it’s safe to say I won’t be joining the throngs again. I arrived back home with two pairs of high-waisted jeans for a bargain price, but was so exhausted I collapsed onto the sofa. It seems so chaotic following the amazing magic and tranquility of the past few days enjoying Christmas and watching War Horse with my family…I’m going to do the rest of my sales shopping from the comfort of my home within metres of the loo to avoid anymore mucus moments.

I’m starting to think about next year and what I want from it. This year has been a mixed bag both health wise, emotionally and career wise. I’ve been through more pain than I could have ever imagined, I’ve been to hell and back, I’ve wished for death and I’ve come out of the other end. At the same time I’ve made some incredible friends, been on some stunning holidays, eaten like a King, swum, ran and jumped like an idiot. My weight has plummeted and then slowly built back up. I’ve been off work for half a year and then come back to two awards and recognition for a job well done. I’ve loved, cried, howled and giggled my way through 2013… but now it’s time to shake it all off and look forward to 2014.

Next year I will finally wave goodbye to my mucus fistula (fingers crossed) and the pain in the arse which is my rectal stump. And, if all goes well, I will finally slam the door in the face of the illness which has so far tormented me like a little snotty gremlin hiding under my bed for my entire life. When this happens the world will be my oyster, there will be nothing except myself holding me back. I will be able to go as far as I want and achieve whatever I want to achieve. But to do that I know I have another bout of horrendous surgery, another lengthy period off work and another painstaking recovery to go through.

Perhaps that’s why I feel so down. But I think it’s more likely to be the festive blues. Time to get my guitar out and trying to strum away those dark skies with some tuneless random cords I think 🙂

After all Christmas isn’t over yet…. As a friend said “we’re only on four turtle doves in our office”.

Being a pushy patient – why you shouldn’t always just nod along


In the nurse's room being treated after kicking-off

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

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

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?

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.