The last supper – night before my second operation


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

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

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

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

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

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

Thank you for giving me strength and hope.

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

It will be ok.

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Covered in blood – when black tie goes wrong with a fistula


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What happened on Friday night will remain etched on my mind forever as one of the worse moments of my life so far with an ostomy. It was also the moment I realised I had to have the operation to make my ileostomy permanent or I would live the rest of my life in fear of humiliation, pain and discomfort.

It was probably the final straw in a very long and painful journey, and perhaps exactly what I needed during these final days before my big op.

This entire week (well last few months really) has been a battle. I’ve been living in a constant flare for so long I can hardly remember what it feels like to be well (how I felt in the weeks after my op). I have no idea how such a tiny bit of bowel can cause so many problems, it must be ulcerated beyond belief to be causing so much pain. But the last few months my colitis has starkly reminded me of what life was like before my operation and the horrific pain simply being alive every day entailed. The impact that tiny bit of inflamed bowel has had has been astonishing, and I no longer know how I coped for 13 years with the constant pain, vomiting and diarrhoea. I was either very stubborn or a saint to put up with the torment for so long, and it is something I can no longer comprehend.

Over the past few weeks my health had gone rapidly downhill. My nose is so stuffed with impetigo – it bleeds and cracks when I dare to sniff or crinkle it, and my eyes have gone bright red and tender. This morning I woke up and one of my eyelids was glued together – something that not only hurts like hell but makes you feel like your tearing your lids apart as you prise them slowly open with hot water. My joints pull and crack as I move and it hurts to lie down. My fistula constantly pulls and tugs, making me nauseous, and is producing around two pints of blood and mucus a day. And despite my bowel not actually being connected to my digestive system, I still, for reasons beyond comprehension need the loo with upmost urgency five or six times a day – but I am unable to fart (cruel beyond words).

I guess the result is I feel like a withdrawing crack addict – the reality is my ulcerative colitis is saying goodbye in style.

Anyway, on Friday, with just days to go until the dreaded op and with doubt still hanging over me like a dark shadow of doom, I pushed away my pain and fears and headed out to a black tie event with my boyfriend. All day my fistula had been playing up; it pulsed in a sickening manner all the way through a law refresher at the Liverpool Echo offices, almost leaked through its bag as I was talking to shocked shoppers outside an alleged knife attack in an Ellesmere Port supermarket, and had general paddies all day. Despite this I dared to put on one of my favourite dresses and head to an evening for my boyfriend’s work.

The evening was filled with the elite from the engineering world, the local MP was there and it was a generally fancy and elegant affair. I was enjoying myself chatting with Andy’s work colleagues and eating some decently edible food, but in never stooped being aware my colitis was not going to be cut away from me without a fight. Safe to say I couldn’t fully relax through fear of my ostomy exploding or fistula leaking, and kept nipping to the loo to check everything was fine. It always was.

What happened was worse than I could ever have expected.

We had just finished eating and I noticed a small mark on my blue dress. I looked down and noticed the mark was a little bigger, then I slowly noticed my dress was damp. My first thought was that I’d spilt water over myself, my second was that my ostomy had leaked. As I stood up I realised the situation was far worse, my dress was saturated. Luckily the room was dark so no one could see the full damage, but I knew right then something had gone badly wrong and this was not a slight leak or, as I’d wrongly thought, a slight water spillage on the front my beautiful dress.

My dress was so wet I could hardly walk as I staggered to the bathroom. As I inspected the damage I almost burst into tears. I’ve experienced some of the most horrific and darkest moments of my life in toilet cubicles (passing out, doubling over, sobbing, sleeping on the floor, screaming out for mercy and help) but this was one of the most panic stricken and desperate of all. It took everything in my power not to breakdown.

The under layer of my thin dress was so soaked in blood I thought I’d been stabbed. As I inspected the damage I started to think I’d started my period or badly cut my abdomen. My knickers were so soaked in sticky mucus and blood I actually, I’m ashamed to say, took them off and thew them in the sanitary towel bin. The blood – which I quickly realised had been caused as my fistula spurted out mucus with such force it pushed off my fistula bag (baby Stoma bag) and shot out all over me instead – and horrific smelling mucus was all over me…it even trailed down my leg…I even had it on my foot.

For a moment I just sat and gawped in total shock. I couldn’t understand how I hadn’t felt it happen. How did I not notice this disgusting smelly substance leaking all over me? Then I realised this was going to ruin my evening and stop my partner spending time with his colleges, and stupidly thought that by moping everything up with tissue I could get away with it. But I soon realised no amount of toilet roll was going to shift this, I was simply caked in it.

By the time we got home I was in tears. As I got in the shower I stared at my body, at my fistula, and i wanted to rip it from my body, I wanted to scream and scream how much I hated the hand I had been dealt. And as I changed the blood soaked bags I took pleasure in knowing it would be one of the final times I would have to deal with this horrid second bag, which leaks and drips every couple of days and leaves my skin blistered and weeping.

By the time my tears were dry and dress was in the wash I realised that this was exactly the sort of humiliating, painful and exhausting moment I needed to realise I was making the right decision. People may not be able to tell I have a ostomy bag (I often forget) but they/I sure as hell know that troublesome fistula is there. Especially when it leaks repulsive smelling grunge everywhere.

And you know what everyone, especially me, could live without that forever.
In the words of the Lion King – it’s time!

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A half pint of blood and mucus – my fistula’s final hurrah


Sorry I haven’t written for a while, the last couple of days have been a little chaotic both in and out of work. It has also been a tough week for my health, which always suffers at a time of stress and leaving dos – with late nights, long working hours and general stubbornness and excitement causing chaos with my colitis.

This week I’ve been in a considerable amount of pain. My fistula seems to know it’s only got a month left to torment me, so it is unleashing hell, in what can only be described as a ‘final hurrah’. I’m often surprised by how much mucus my tiny rectal stump can generate in a short space of time. On Thursday I was in agony at my desk as it pumped and squeezed. When I went to the loo to assess the damage, I understood why – in just ten minutes my tiny inflamed section of colon had produced around half a pint of blood and, well, horrible smelling goo.

Every time this happens I wonder how it manages to produce quite so much. Even now I still pass blood through my bottom end four or five times a day, and with my fistula bag (a baby ostomy bag) needing emptying at least three times, that is a heck of a lot of mucus my colitis is creating.

I can’t bear to remember how I coped when I had meters of the bloody thing! There’s no wonder I was going to the loo 20-30 plus times a day, when you look at it like that.

Right now I’m exhausted. I’ve given up on my health with the happy prospect that in a month I might, fingers crossed, never have to deal with any of this crap ever again. My eyes are bright red again (a sign of my inflammation markers shooting through the roof), my mascara has gone in the bin and my makeup brushes have been declared a “toxic zone” until I attack them with a bottle of baby shampoo later today. Yesterday I resumed the agonising eyelid hygiene treatment in a bid to get rid of the crust forming around my bright red eyes. This involves cleaning them with water as hot as you can cope with (without burning yourself), and then cleaning them again with cooled water with bicarbonate of soda in. It hurts and leaves you feeling raw – but it works.

Before my surgery when I was ill I looked ill. I would look drawn, tired, and as if I was being held up by an invisible string that might snap at any movement. Now, knowing I’ve had my surgery, I apparently look “well” most of the time. Well, that’s what people insist on telling me. It is nice to hear, but when you feel like your going to puke, your stomach is pumping out blood and your brain is yelling for you to go home and get into your pyjamas with a hot water bottle and wait for it all to be over, someone smiling and saying “you look so well”, can be hard to deal with. My response is always that I’m not 100 percent there yet but I’m a million times better than I used to be – what I want to say is “thanks, but I don’t feel well”.

It sounds silly and selfish and I’d rather someone told me I look good than “anorexic”, “skinny”, “pale” and “bloody awful” – all things I have been referred to as time and time again – but sometimes you just don’t want to hear it. In fact at a work do on Thursday a former member of staff said “your not right are you, I can see it in your face” moments after another told me I looked fantastic. Ok, she has Crohn’s too, so she knows the warning signs, but I think I appreciated her honesty and her concern more than any of the compliments I’ve had over the past six months since my op.

I spent far too much of that night talking about my condition. I chatted about Sir Steve Redgrave, Darren Fletcher and my horrific experiences in the hospital, until I didn’t want to talk about it any more. It’s not that I’m not open (totally the opposite actually, I’d tell a stranger on a bus about my condition if Winnie started farting), sometimes I like to try to forget I don’t have it and just pretend I am a normal healthy person.

I’ve stopped sleeping properly really since my pre op assessment. I’m having weird fragmented dreams and waking up at random times again to my fistula pulsing and twinging. I’m tired of it, but I know worse is to come in the next few weeks.

I’m excited and apprehensive about my upcoming stint at The Mirror and my time staying in Canary Wharf. I’m just hoping my colitis doesn’t get worse, my eyes lose their monster crust and my skin stops bleeding and breaking for long enough for me to enjoy it.

Surgery date looms – just over a month until my ostomy become permanent


Tomorrow I’ve got my pre assessment for my surgery and to tell you the truth I’m terrified. It’s been almost nine months since I had my first ever operation and to say last time I wasn’t worried would be lying. I avoided surgery for almost 13 years through misinformation, hope and fear, but when I realised I had no other option but having an ostomy, I didn’t look back….I grabbed the surgery with both hands knowing that anything was better than living life looking through permanent black spots of agonising pain and wanting to die.

Last time was an emergency, I was too weak to really understand what was going on. Yes I dreaded it, and yes I was afraid. The week before the operation I was frightened but I had resigned myself to a life with a permanent ostomy. I thought that was the only option, so when I woke up with a temporary ostomy I was angry. I’m still angry. Perhaps that sounds unreasonable, but I told my surgeon if there was any sign of colitis in my rectum they should remove it all once and for all – it was bad, it’s still bad and he left it in.

I know there are all sorts of reasons for that, but nine months down the line I’m not well, I wouldn’t describe myself as ill either, but I’m living with the consequences of my surgeon choosing to leave that rectal stump in. My fistula causes ripping pain through my stomach (nothing like when my colitis was bad), squirts out foul mucus and bags full of blood and leaks causing my skin to blister and bleed. I still struggle with the bathroom (but not half was much as before) and infections. And I’ve just about had enough.

But despite currently having two bags, it’s not all bad news. Since I got Winnie (Stoma) I’ve had the taste of what life could be like without a colon. Yes, there are good and bad things and it’s not been the easiest thing in the world to get used to, in fact it’s been tough and at times upsetting, but life has never been better. Most days I barely think about my ostomy, yes the same can’t be said about my fistula, but most of the time my ostomy gives me absolutely no problems. And if all it takes is for me to have that forever to have a life free from fear and pain and torment I’ll give it a go thank you very much.

I guess I’m not worried about having my ostomy made permanent, I’m frightened of the surgery, but I’m even more frightened of the recovery. Last time a lot of things went badly wrong, there were a lot of mistakes made in my aftercare and a lot of things happened which I have made an official complaint about. It’s sounds wrong but I no longer trust the hospital who treat me, I have lost confidence in their ability to help me recover. These are not unfounded fears I have kept to myself, they are based on real things that happened; my stomach bursting open; my epidural placed wrongly causing my leg to feel paralysed; being given milk for breakfast constantly despite being lactose intolerant; food going missing; pain killers not being administered; being left in dirty clothes – the list goes on.

So I’m frightened. I know I have to have this operation if I want to get on with my life. Despite everything I still trust my surgeon with my life. I know I have to face the surgeons if I want a life free from colitis. I just hope I have the strength to do it.

Free prescriptions with an ostomy – it’s about time my IBD has cost a fortune


I’m so sorry for not posting for the past few days, it has been unbelievably hectic at work. But after a day hiking up mountains and ransacking my flat, throwing out all the rubbish me and my partner have collected over the past year, I thought it was time to update you all on one amazing thing that happened this week.NHS_Helpline_in_cri_436145a

I now get free prescriptions.

For the past 13 years I have paid through the roof to suffer from Crohns/Ulcerative Colitis. In fact the prescriptions have got so expensive I have had to rely on my parents to pay for the endless amount of green forms that I have needed to get filled in on an often daily basis. In fact my parents soon realised that it was more than worth shelling out the £104.00 for a prepaid prescription card. In fact paying up front for my prescriptions, instead of shelling out £7.85 for each item quickly saved both me and my folks a fortune…indeed just one month after paying out the cash we had got our monies worth after I was prescribed a shed load of painkillers, steroids, ensure drinks, suppositories, asacol – to name just a few of what the doctor decided I needed to shell out for – which would have cost around £80.

For people living with chronic conditions or who have children with illness prescriptions are too expensive. It’s that simple. If you have an ongoing condition simply buying your daily medication can tip your finances over the edge if your already struggling to make ends meet. I have no idea how families with one or more people needing constant medication manage to even put food on the table. And it’s not only the maintenance medication that needs to be forked out for every few weeks; it’s the emergency steroids, and the constant antibiotics, eye drops, haemorrhoids, joint medication, skin medication, creams, lotions and potions and all kinds of other things inflicted upon us due to our low immune system caused by our chronic illnesses.

I think if I’d kept all my prescription slips over the past 13 years I would be drowning in a sea of green forms. I don’t think there would be anywhere for me to lie down; I wouldn’t be able to cook, bathe or even sleep…let alone find the medication I’d paid my entire salary for to keep me alive. And I think by now – if it wasn’t for help from my parents and their amazing idea to get the prepaid card – both me and my whole family would have forked out way over £10,000 in money for my medication alone – it’s probably been about that much anyway!

If it wasn’t for my parents paying for a lot of my main prescriptions I honestly don’t know what I would have done. On a trainee reporters wage £7 plus two, three, four times a week would have been too much and as a student it would have meant eating baked beans straight out of the tin – that wouldn’t have been good for my IBD diet at all.

I’ll attempt to do a sum here – if I’d paid what it costs now £7.83 for one prescription a week (I know it used to be less but this is just to prove a point) for 13 years it would have cost:

ONE PRESCRIPTION PER WEEK = £31.32 a month (I think) eek my maths are not great

£31.32 x 12 = £375.84 a year

= £4,885.92 for 13 years

And that’s only one prescription a week – some weeks I still have five or six. I would probably say that until I had my ostomy last year I was probably averaging four prescriptions a week – which could go up to eight or nine – so that makes it more like £125.28 a week or £1,503.36 a year or £19,543.68 over the past 13 years. And that doesn’t even take into account my ostomy bags and accessories. Oh, and all the years of Infliximab and other infusions which were (not sure about now) paid for by the NHS.

So a couple of weeks ago, after seeking some advice from the trusty internet, my mum encouraged me to go to the doctors to see if there was any chance of me getting free prescriptions because of my ostomy. And there was. Because I have an ostomy and a fistula I am eligible to get free prescriptions. I know that most websites say that you need a permanent stoma, colostomy or fistula to be eligible for free persriptions, but my doctor told me to apply – and it worked.

Free from now on

Free from now on

And i’m not cheating, my ostomy will become permanent this year. And, you know what my Crohn’s is not going away. In my opinion anyone with this condition should be entitled to free prescriptions. I know we don’t have it as hard as the US, I won’t even claim to be medically bankrupt, but if I’d had to pay for three years of infliximab I would be.

And if things couldn’t get any better, the form says that even if your medical situation changes you can get free prescriptions until your card runs out – they last five years and for all that time all of your prescriptions, whether related to your ongoing medical condition or not are free.

It’s about time, that’s all I can say.

For more on free prescriptions if you have an ostomy or colostomy see http://www.stomawise.co.uk/lifestyle/prescriptions-medex

For more on prepayment certificates – they really are worth it – http://www.nhs.uk/NHSEngland/Healthcosts/Pages/Prescriptioncosts.aspx

 

How to apply for a Medical exemption certificate

To apply for a Medical exemption certificate ask your doctor for an FP92A form. Your GP, hospital or service doctor will sign the form to confirm that your statement is correct. At your GP’s discretion, a member of the practice who has access to your medical records can also sign the form.

Your certificate will be valid from one month before the date that the NHS Business Authrority receives the application form.

The MedEx lasts for five years and then needs to be renewed. You may receive a reminder that your certificate needs to be renewed. If you don’t receive a reminder, it is your responsibility to ensure that it is renewed.

You can find more information about the application process and refunds on the NHS Business Authority’s website.

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”.

Just how well am I allowed to expect to be? Never 100% it seems – it’s time to say ostomy or not I need help


I’ve just about had enough, life just isn’t what it was straight after my operation. Over the past week I’ve just simply not felt like Imagetalking about anything fun, happy or colourful. I’ve continued to put on a brave face and smile, but the truth is I don’t really feel like smiling. It could be because of the cold dark nights, it could be going into work while its still dark and arriving home in the depths of blackness, living like a vampire and never seeing the sun, it could be a whole number of things – but it isn’t I’ve just had enough of getting the rough end of the deal.

This week and last I haven’t been feeling happy with the straw I’ve drawn. After 13 years I’ve served my sentence and now I’ve had enough. I’m not happy with my health since my operation. It’s not the miracle cure for my Crohn’s/Colitis that I’d hoped, it was for a few months like living a brand new life, but now it’s not.

Ok, so maybe this has something to do with spending the last week in the most unbearable pain since my operation after developing a very freakishly large abscess in a very unfortunate place (I don’t think I need to elaborate). After the amazing weekend in Newcastle falling back in love with swimming all over again and feeling back to my old self – less the agonising pain – I suddenly (in the space of hours) developed this lump, which grotesquely gained a life of its own and grew and grew to the size of a golf ball. The result was that come Monday night I was in unbearable pain…unable to walk, sit down or lie down without emitting a squeak like a dying mouse caught in a trap. And by Tuesday I struggled to sit at work perched on the end of my seat waiting for 3 o’clock for an emergency appointment with the IBD nurse who took one look at it and went “oh Rachel that’s painful to look at” declared it was probably only curable by operation before getting a doctor to poke at it till my eyes streamed and prescribed my with very powerful antibiotics (you know the type you are so forbidden to drink with they even write it on the outside of the package).

Anyway it drained bucket loads of bloody stuff and I spent three days in bed sleeping like there was no tomorrow. Oh and throwing up – great, thanks Crohns/Colitis.

At the follow-up appointment a doctor I’ve never met had another good poke – I wished at that point I’d had a bikini wax, strange what goes through your head at these moments – I often think of the oven being on, etc. Anyway she decided I’m officially ill. FINALLY. She also decided that I should have my operation as soon as possible to remove the rest of my bowel  something although I wouldn’t like to admit it almost reduced me to tears at the prospect of missing my Mirror placement, awards ceremony, Christmas parties and playing hopefully in snow – also the idea of being stuck at home for another four months just makes me want to die…haven’t I had enough for now?? Isn’t it time to live for a bit, to enjoy life?

But don’t I want to have it removed and be well, I mean truly well?

I never wanted this rubbish illness (I mean who does?) but since the operation it seems just mean that I’m still having many days where my life is ruled by bathrooms, blood, guts and pain. I keep hearing myself say to people “well i’m loads better than I was, I’ve never been more well in my life”, I keep hearing myself say to doctors, surgeons nurses  “I don’t want to complain I don’t feel great – but, I still feel loads better than I was”.

Why do I keep doing that? There’s really no wonder there doing nothing about my rapidly declining health when I keep saying I feel “loads better” but a little ill…I’m making it sound like I’ve got a common cold not an incurable illness. They’re probably thing that I put up with it before for a whole 13 years, so if I’m better than ever I can no doubt put up with a little NIGGLE for a little while longer – and no doubt I can if forced to – but how long is a little longer? A month? A year – A LIFETIME I’m guessing!

Anyway after 13 years of this hell and finally going under the knife why should I not expect to feel awesome, I mean like jumping out of an aeroplane awesome, running through a field wind in my hair awesome? I had a few blessed months of feeling weak but incredible, then I made a load of energetic plans but now I’m struggling to even imagine doing anything but the reading challenges.

I’m not happy with how my body is at the moment – there I said it (that wasn’t that hard). That’s the truth and it’s got nothing to do with my ostomy bag, in fact if it was just Winnie I would go running through the streets flashing her shouting SUPER WINNIE (no I wouldn’t for fear of all sorts of consequences, one of which would be a passing pigeon pecking at her) and showing her off as the most amazing piece of medical genius ever invented. No it’s all the other things that are currently going wrong:

A lovely day at the end of a very miserable week - I live for moments like this

A lovely day at the end of a very miserable week – I live for moments like this

1) my mucus fistula which seems to be getting bigger and even more like a second stoma every day. Honestly its a massive pain in the gut (metaphorically and literally). Felicity is both painful in her spur of the moment movements and dramatic. Basically like a messy child when my fistula erupts she never stays contained, she hardly ever aims into the bag, but more around it causing insane damage to my poor still not fully healed skin and creating a considerable and inconvenient mess.

It’s as if she knows that I don’t want her there. You see unlike Winnie I never wanted her, she was a horrible and unexpected consequence I never expected, like those bloody annoying people who unexpectedly turn up for tea when you don’t have enough food and never told you they had allergies and expect to be fed. My fistula basically came to the party without any beer and drank a whole crate.

2) the never-ending need to use the loo – I remember straight after my op when I went to the toilet for the first time I thought “what the hell my bowel isn’t connected to anything, how can I still do this?” – an excellent question I must say. Now it’s six months later and the urgency is still there and I still find myself having accidents and racing around to find the nearest M&S to use the loos – hmm not what I signed up for.

3) the unexpected abscess – urgh comes hand in hand with my illness it seems.

4) feeling depressed – comes hand in hand with my illness it seems.

5) my joints – the cold weather drawing in is playing havoc and some days holding a pen/ putting on my coat with my hands and shoulders seems a true challenge. Nothing seems to be getting rid of this agonising problem – and I don’t think anything will, but never mind it’s a small problem in a large goldfish at the moment.

I just want to be ok, is that too much to ask? it would seem with IBD it is, and I’m guess I’m used to that and I can put up with that. It’s moments like tonight when really looking forward to swimming and suddenly realising as I remove my tights that fistula has soaked me though with blood…God knows how long I was like that for too. So I had a break-down and got re-dressed and ran out. Bloody drama Queen!

A little moment of calm - no leak!!!

A little moment of calm – no leak!!!

I had been feeling a little better too after a stunning Autumn walk in Lymm on Sunday with Andy, kicking the fallen leaves and dancing around in my new furry hat and running away from crazy muddy dogs determined to leave their print on my new cream coat. But that swimming moment has brought me crashing down into a world of negative feeling sorry for my self yet again.

I only wanted to feel like me again. Which, I’m sure once these antibiotics are gone and the docs have stopped shoving tubes up and down various places aliens would probe I will.

I just need some help getting back to that place….help!