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!

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Here’s Winnie – meet my temperamental stoma


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!!!

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 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 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

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

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 :)

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 :)

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.

Me & Winnie disagree with vino & bounce along close to Jessie J and our brave Dad…


So I’m exhausted today 😦 let’s just say that I had far too much fun this weekend, which if you have IBD

(which includes Crohns and Ulcerative Colitis) is a recipe for disaster. Even before I had Winnie attached to my poor tummy I always found that my crazy Crohns or Colitis liked to pop up at the most inconvenient of times. Let’s put it this way….I would be feeling just slightly like a normal human being for a few days and would have just tried to live a little, go out, let my (very short) hair down and act like a normal 20 something-year-old when BOOM my illness would rear its ugly head in a kind of Peek-a-Boo “Here’s Johnny” way.

So yesterday was Father’s Day and I wanted to do a short V Blog to tell you about how amazing my Dad, and my family are and how important they have been in my journey through this illness. I love you DAD!!

So this weekend my poor, and extremely understanding boyfriend (I suppose you could call him my “better” half) decided to host a BBQ at his stunning house in the Cheshire countryside. His house is what we in the Ghetto call “something else” or “Mega Dope” (I’m sooo down with the kids). It is far too big, with massive gardens, and when you stay over you wake up to the sounds of cows mooing and birdies singing….it is paradise just miles from the city 🙂 I love it there!!! But Friday was the first time I have stayed there since my operation, and as a lady I had to take just about everything but the kitchen sink with me so that I could survive just two days! Well it is hard looking this good all the time #bigheaded

Anyway, anyway, anyway. On Friday night I made us both a healthy tea of pasta and veggie sausages and goat’s cheese. Which was YUM! Then we watched The Following, which, if you haven’t seen it is AWESOME, but terrifying, and being a proper wuss I spent half the time hiding behind a cushion and smudging my freshly painted nails by gripping my boyfriend’s hands so tight.

THE DRESS - I would never have worn this b4 Winnie - she is so much more cool than me

THE DRESS – I would never have worn this b4 Winnie – she is so much more cool than me

Then on Saturday the real fun began. We woke up to typical British horror weather, as you always do in England when you have an event planned that requires spending any time outdoors! I got dressed up in festival style clothes (no rain was going to stop me and Winnie wearing our new extra colourful maxi dress) and made massive amounts of healthy pasta salad to counteract the enormous amount of fatty meat he had purchased for the grill. Then I basically let him get on with it!

Anyway the BBQ was going well, my boy was enjoying being the MAN of the house, you know being in charge of burning the meat 🙂 – me man, me fire, me meat, me burn – and I basically carried things backwards and forwards and played being the hostess. We had a bit of rain which came after most people had arrived and the skies finally opened after the CLOUD OF DOOM finally shed its load after threatening to do so all day. It meant that around 10 adults decided to cram themselves into a very small Wendy house – amazing to say the least 🙂

So, after not drinking for around three months, I shunned alcohol all day despite people asking me again, and again, if I wanted a drink. I was even fairly careful with the fizzy pop, being aware that one sip too much would mean a whole day of Winnie flying into a paddy and blowing up with hot air in a fit of rage. But in the evening I decided to have my first sip of wine, and, guess what, I DIDN’T LIKE IT!!! For the people reading this that know me (which is probably all of you out of kindness to me) you will know that I love a good glass of Sauvignon Blanc – or two, or three (obviously I’m not an alcoholic but I may have a bottle or litre or two hidden under the sink #joke). So me not liking any wine is, quite frankly, extremely weird. I must have managed to have a drink at around 10pm, and only had about a medium glass…..I was WASTED 😦 which I suppose is great if you want a really cheap night out, but I just wanted to chill out and now I felt like I was going to fall asleep dribbling in a heap on the floor!!!

That was all I had…well, ok, that’s a lie…I may of had one tinie little gin, which I regretted the moment I put it to my lips and decided i didn’t want it (it was the gin that done her in…how true, how true). So I set about tidying up while the others played Pictionary in the living room and headed to bed having eaten only around half a sausage and a handful of pasta twirls. Everyone else was pretty drunk – I mean when I woke up the next day the house had been drunk so dry even a cactus would have died after weeks in the desert – which made it even more infuriating that I woke up feeling like I had been hit by a bus and everyone else was fine. I mean how unfair #wtf!!!

The morning after - trying to finish this really dreadful book (comment comment comment)

The morning after – trying to finish this really dreadful book (comment comment comment)

I probably felt as bad as I did the time at University that the Cheerleaders (yes queue laughter, me, Rachel, who can’t sing or put one leg in front of the other was a cheerleader) and American Footballers all put money together for me to drink a dirty pint made up of around 20, or it could even have been 30 (yes I was that popular) shots of black sambuca. Think banging headache, red-eye, hair all over the place, stomach cramps, nausea and dry mouth – it must have been a real special moment to wakeup next to me that day – mmm sexy!!!

Also I suddenly remembered that I had to finish Stephen Fry’s autobiography by the end of the day or I would break the “Read a Book a Week” part of my 101 challenges and have to start all over again. Which, I must stress, was not going to happen. So, with a gang of bleary eyed and far too enthusiastic guys in the house, I attempted to race through the remaining 200 pages of the book, which by now had become boring and tedious like all self-imposed chores (like ironing and hovering) eventually do when you are forced to do them…..

OH I FORGOT THE MOST EMBARRASSING MOMENT OF THE WHOLE WEEKEND!!! During the BBQ I had to empty Winnie a few times, and to do this I have a special (well a clothes line) peg to well peg up my dress so that I don’t make any mess. So I had done that, and around 2 hours later I needed to empty her again (which is almost a record amount of time for Winnie). I think you may have guessed it…I got to the loo and couldn’t find the peg so decided to just hold my dress out of the way…that’s when I discovered I had been sat chatting to all mine, and my bf’s friends for the past two hours with a pink peg clipped to the side of my dress!!!! Humiliating!!!

£5 bag of sweets – and they didn’t help

Later in the day, after I went back to bed for a few hours to try to sleep it off, which, well you’ll see from the pictures,  didn’t work. Me, Andy and Winnie went to Chester – errrr – Rocks!!! (I say err cause there is not much that Rocks about it I’m afraid – it is more of a pop thing, which I can’t say I mind, being a little teenie bopper – this does NOT mean that I hit Teens over the head with a mallet – at heart I love pop music)…. We saw Charlie Brown (?), some girl off the X Factor called Amelia and Lawson (some boy band I said I had never heard of but secretly love them)!!! I bought a bag of sweets to try to thicken up Winnie’s output as she had massively disagreed with the sip of alcohol and was stropping around like a moody teenager filling up with hot air and yucky poop – and it was the most expensive medicine I ever had costing me £5 for a bag of sweets. THANKS CHESTER RACECOURSE FOR NOT LETTING US TAKE OUR OWN FOOD AND DRINK!!!! ARGH!!!

I’m going to let you all into a secret now – I LOVE Jessie J!!! I don ‘t know why so many people don’t, I mean when I said I wanted to see her to some of my mates they were like “oh no…why?”, but she is fantastic. I love that she is unique and she doesn’t take any shit…I mean she doesn’t care what people think at all, does she 🙂 I got all excited when she got on stage and I started dancing like a freak!!! I even saw some parents looking at me with horror and even (you’ll laugh at this) move their children slowly away from me thinking I was a drugged-up Nutter!!! I think the people with me, Andy included, were totally humilated….there was never a better time to think “move away…we’re not with her…we don’t even know her”!!

Jessie J – “Its ok not to be Ok” good for you!!

I mean she was incredible, and all round entertainer who even said some truly from the heart things to the teenagers in the audience that I thought were just inspirational. She said it was ok to be who you wanted to be and to not worry what people thought or what people wanted you to be – that it was ok, not to be ok, and to cry and to feel like crap and to want to not do things people want you to do. I guess that struck home with me and what I am going through at the moment….I know I come across as happy-go-lucky, but behind my smile I can be seriously messed-up at times, this illness can seriously mess you up – I mean it’s draining emotionally as well as physically – but without all this pain I would never have become the person I am today for better or for worse!! Sometimes with Crohns, with a Winnie, I think it has to be ok not to be ok….I think It’s ok for us to breakdown, to feel and look like shit, to just want to curl up in a ball and cry, to hurt, to feel pain – just as long as at the end of it you pull yourself together and realise I WILL BE OK!!! I will not let this illness, this stroppy Winnie and this crap get me down…I AM STRONG, I RULE THIS ILLNESS IT DOES NOT RULE ME…

So with all that gibber jabber going round in my head Jessie (that’s how close we are….perhaps I should call her J) started singing my favourite song Who You Are. And, I am not ashamed to say actual tears started pouring down my face as she sang “tears don’t mean you’re loosing, everybodys brusing, just be true to who you are”. I think I just couldn’t believe that after all the pain, blood, poop, near death, stress and well years of not being ok with this horrible thing, with this crappy crappy illness, I was stood in a field with amazing friends, and an amazing man, and listening to a live music concert of a mega superstar telling me that ‘it’s ok not to be ok”…..when Andy asked me why I was crying I said “I am just so happy”…and that guys is the truth!

We finally got home after almost getting crushed by heaving crowds trying to get out of the tiniest exit in the world…God knows why they didn’t open the gates. I eventually was allowed through the gates by saying I was being bashed to death in the crush and had had surgery…the security guard didn’t look like he was having any of it and I almost had to show him Winnie and Oscar, but believed me when he saw how bent double I was -PHEW!

Anyway, this has been really long….so enjoy watching a really silly video of me dancing to Lawson at Chester Racecourse….the shame!!! (I looked like a freak, back away from the crazy woman kids). I call it the IBD Freedom dance!!!