One ticket to rantsville please.

I've been trawling the internet for the past few weeks for blogs about FODMAP or any information about colitis/Jpouch being helped along by change of diet.

I have found some amazing blogs detailing the diet, a few go as far to post a few recipes, which is amazing but then, out of the blue, all the posts stop. 

Where have the wondrous bloggers disappeared to? Was it just to difficult to re wire your brain from wheat/dairy to quinoa/rice milk? (I have yet to have quinoa but have heard it taste like bum. However rice milk, I can tell you from experience, tastes like bum. Not that I've tasted bum, so technically this whole point is redundant. On the other hand saying "it tastes bad" just doesn't have the quality I'm looking for. Right. Moving on.)

In fact this whole post is just to tell you all how frustrating it is about the lack of information there is about seeing this diet through. 

There is plenty of information about the diet, what it stands for, what you can't have, what you can have yada yada yada but what about information about a recipe that actually tastes good. And to the point isn't ridiculously expensive? 

The health food store in all its hippie glory is so expensive! I went in there to buy some peanut butter that wasn't loaded with sugar and nearly cried. FOUR POUNDS? For a tiny jar something that is meant to be good for me that I can stick on my rice cakes so it doesn't taste like bum? There's the bum again. 

I wish I could meet a chef and we can set up a little fodmap cafe for all the people out there with dietary issues, because as amazing as the gluten, wheat free places are, what about those of us who can't have onion or garlic? 

Why are we reduced to a stinky salad, which by the way I can't even eat too much because too many leafy greens go straight through me and I end up sitting on the toilet perfecting my French braid technique.

I can only hope that  this diet thing will get easier because right now its like smacking my head against a brick wall. 

Till then, I shall bid you all adieu and grudgingly eat my buckwheat flakes with rice milk. 

Poop.

I realised a few months ago that my friends and I talk about poo. A lot. It would be a different story I think if I didn't have a bowel disease, and some up-tight friends. However my friends are so amazing and supportive, that when they ask about my problems they are quite happy to hear the gory details.
So much so that we end up swapping poo stories.
I even have some friends where we make a point of messaging each other when we are on the toilet!
In other circles of friends I have become somewhat of a poo guru.

I stand in a dimly lit room with incense burning, its quiet, a friend enters the room and kneels before me.
"Stephanie, I must confess,  I have very bad diarrhoea, its been this way for a few days now. I just can't control it and I don't know what to do"
"My child," I say putting my hand on their shoulder
"Take this packet of loperamide, strip your diet back to plain chicken, white bread and mashed potato and you should see some significant improvements within the next 24 hours. Use this sachet of Dioralyte wisely, it will help replace some of those salts that you've lost, and my child, if it does not improve go and see a doctor"

Yeah. So what actually happens is my friend tells me she's got the shits and I give her the above advice.

Poo is such a taboo subject. Nobody likes to talk about it, and though I don't think we should go around telling every one who will listen about our bowel movements, if there was not such a stigma talking about the subject, perhaps young people like myself and others might not feel so embarrassed about having IBD.

Try as hard as I can not to let the toilet be a focus point in my life, I can't avoid it because ultimately I spend a hell of a lot of time in there! The things I've learnt in that space of time are amazing, when I was in hospital in the weeks leading up to my surgery I learnt how to French braid my hair properly because I was just so bored.
Now, when I'm really stressed and need a bit of a time out I find I think best when I'm in the toilet.

I'm happy that I'm not still in the phase of my life where I would have to plan days out around toilet stops in case I ever found myself short. My JPouch is strong enough now to be enable me to hold on until I need to. I think that is what a lot of the self conscious embarrassment stems from. You can't control when you have to do one of the most simplest acts of a human. To control when you go to the toilet.

I don't expect people to willing go around having a conversation about how they have pooped that day, but if the stigma around the subject lessened a little bit, perhaps it could take a little pressure of those suffering from an already stressful disease.

Freaky Friday

Stumbling to the bathroom I am aware of how large my stomach feels despite the fact I have not eaten yet.
Mouth is dry, head feels like cotton wool. Its like a hangover but without the booze or the fun of the previous evening.
I sit on the toilet trying to wake up, realising that I've only clocked about 4 hours sleep I yawn sleepily and am disturbed to feel a sharp pain shoot up my left side.
Feeling suddenly awake, I feel a deep spasm and a wave of nausea hit me. Grabbing the side of the radiator, I gingerly stand and breathe deeply until the spasm passes.

Opening my eyes everything's a tad hazy, and I realise I'm on my back staring at the ceiling. Fab. I've passed out.
Slowly getting up I go downstairs and wake up the boy

"Baby, I'm going to the hospital",

Considering he's been trying to get me to hospital a good few days before this, I would have thought he would have been a bit more enthusiastic. Instead I am met with a grumble of it being early and that we should go later.

Sighing, I call a taxi and inform work that I will not be making an appearance today.
Waking the boy again, he is disgruntled but happy that I am finally making my way to the hospital.

After the initial wait in a&e, which for once doesn't take that long, I am asked to put a gown on and pee into a pot.

My pee is decidedly shy when asked to make an appearance and I spend at least 15 minutes trying to coax it out and inevitably pee on my hand. The moment I have excruciatingly filled the pot, I pee like a normal person instead of a dribble, my bladder laughing at me.

I conclude that all my organs hate me.

Abdominal xray and a chat with a doctor who clearly hasn't a clue what an internal J Pouch is. Once again I feel like I should carry a diagram of what my operation entails and what my insides look like.
More waiting, some sleeping, 2 nurses try to take blood but its not happening, I'm pricked with needles four times and my blood just isn't playing nice.
Fifth times a charm apparently, but even then they have to wiggle the needle to get the tubes filled.

I get told I'm going to a ward and I start to get upset. I hate staying in hospitals and every time they put me on a ward I end up staying for a prolonged period of time.
"We're taking you up to page ward"
And I burst into tears.
Weirdly this time last year I was in hospital for a flare of UC and I ended up having an emergency operation.
What ward was I on? Page.
Tears are streaming now and I'm panicking, No ones told me what's wrong with my pouch and I'm so scared.
The boy manages to calm me down and the nurses are lovely.
Fluids are hooked up and a chest xray is booked.

A surgical doctor sees me, I'm grateful for the understanding.
After examining me the doctor books an ultrasound stating that it might not be the pouch that is causing the initial problem.

After hours of waiting and several scans later I am told the reason for my pain is, the dreaded cyst.
The little sod has grown and brought some friends. I now have a 10mm cyst on my right ovary and 2 4mm cysts on both ovaries.

I am thankfully sent home with some amazing pain killers. These bad boys have me so drugged I'm just smiling at the world and dreaming of bunnies and unicorns.

So. I will now have a load of appointments to a) determine the outcome of the cysts b) sort out my antibiotics for my pouch c) maybe see my old gastro doctor for some help to live without the antibiotics.

Works going to love me, but as my mum and the boy said, my health comes first at the end of the day. I've always been really nervous about what work will say as I don't want to cause a fuss. But hey, its not like I inflicted this upon myself so I'm afraid I'm just going to have to suck it up and get on with it.

I've been having days where I am super pissed off at life. I'm barely surviving let alone living, and I'm deeply annoyed at how I just can't seem to catch a break.

4 months. I have 4 months to put up with it all and then I'm off to Australia. I just really hope my body settles down before then, my insurance is already sky high, the last thing I need is to get to Australia and be sick there too!

Keep your fingers crossed for me guys. I so desperately want to get better!

The cake is watching me

When I was given the hefty list of foods that I was not allowed on the fodmap diet, my first thoughts were “Oh my God no bread,” followed by “Oh my God no cake.”

I do enjoy a slice of cake. It is a common pass time of mine to catch up with a friend over a piece of cake and a cup of tea.

Sometimes I wonder why I am not the size of a house, and then I realise that it’s because I poo everything out at an alarming rate. Did you know that for a normal person 

Being on this diet I have found out many things. Mainly, how utterly appalling my self control is.

I know I’m not meant to have that piece of cake. That glorious piece of cake that is staring me down singing “you know you want me” and dancing in a seductive way with a fork, is on the “Not allowed list” It has wheat, and most importantly an epic amount of sugar in it.

Yet I am there, five minutes later, feeling guilty that I shoved that piece of cake into my mouth and I damn well enjoyed it.

However my J Pouch is not impressed. I have learnt the hard way that on top of the fodmap diet no no’s, sugar is out.

I always thought that wheat would be my biggest problem to cut but in fact its sugar. It is everywhere and I never realised I how much I had until I tried to cut it out.

It’s everywhere and trying to exclude it is so hard. So far I have only managed 4 days tops to exclude it and then I cave.

I managed to last nearly 2 weeks without wheat and all the other crazy no no’s and I got really upset and everything went out the window.

Being on the fodmap diet I have learnt that if I want to eat I have to take lunch with me. There are very limited foods I can pick up on the go and in a rush.

Even though I know that this diet is what could be the key from keeping me off antibiotics I am finding it difficult to stick to it. Having UC, the ops and now all the problems with the J Pouch, I have adopted the Fuck It mentality. I have missed out on so much and my illness prevents me from doing so many things that I do end up eating things that I shouldn’t. Why can’t I eat that piece of cake? UC has robbed me of so many things so why can’t I eat the cake just like everyone else.

I have been doing a lot of research recently regarding diet and Jpouch and have found some interesting information regarding UC and diet.

When I was diagnosed one of the first things I asked was “Should I change my diet?” I was told that I should be fine, and that when I am in remission that I can eat what I want and to just “listen to my body” when I am in a flare and not eat too many fruits and vegetables.

IBD takes the “one size fits all” and stamps all over it. It’s different for so many people; no wonder the doctors don’t recommend you start cutting certain foods out because what will flare me won’t flare you.

I wish they had recommend trying different diets, or at least planted the seed of researching different foods that could aggravate my UC. Especially now I am having the same symptoms I had with my UC except without an intestine.  

I hope that the gastroenterologists are starting to seek alternatives, to realise that though it is completely necessary to control the flare, that there could be an underlying problem that diet could help to address.

I hope that people with IBD see this blog and decide to do some research on what works for them. Sometimes doctors are so focused on getting the flare under control they don’t consider any other alternatives than those dreaded steroids, when a few changes in diet could relieve a lot of pain that some of us IBD sufferers have.

In the mean time I’m going to try harder to stick to this diet. What’s the point of preaching to everyone if I don’t heed my own advice?!

So Mr Cake, you and I will cross paths occasionally, I only ask that you stop doing that sexy dance with the fork because it makes me want you just that little bit more!

Invasive procedures

I have had many people stick things up my bum.
You never forget the first.

I was in Bournemouth at the time and luck have it had a female doctor. 
For some reason it never occurred to me that having bowel trouble the doctor might want to see my bum so when she said "I'm going to give you a rectal examination" I giggled nervously, then stopped when she couldn't meet my eye and I realised she wasn't joking.
Sensing that I was nervous she asked me to hop on the bed, pull my pants down, lie on my left side and pull my knees up to my chest.
I was staring at the wall trying to think of anything but what was about to happen.
"Okay Stephanie, just relax"
"Shopping, erm I need to get milk, bread, eggs HOLY COW HER FINGERS ARE UP MY ARSE"
And then it was over.

I've had many more examinations since then, and they have all been by men. It has never really bothered me because I've always been so ill at the time that I couldn't care less what was stuck up my anal canal and who by.
However, I will say, when your doctor is extremely hot, then it becomes an issue.

 Just before I had my stoma and I was in hospital for 2 weeks, I was visited by many doctors and surgeons. More so surgeons, as if they were trying to prepare me for what was happening. That, and the fact that I was in a lot of hospital discussions and I'm sure many doctors wanted to see what was happening. I had been the youngest patient they had who was about to have an ileostomy due to UC.

 I was sitting on my bed reading Elle. My skin at the time had become a tired with grey, yellow tinge. I was bloated and puffy from being pumped with medications and all my arms were covered in black bruises from too many blood tests.
In walks a surgeon so good looking he looked like a prince from a disney movie.
I was so speechless I didn't realise he had introduced himself and was waiting for me to go over the gory details of how many times I was going to the toilet and the consistency of my poo.
As if that wasn't bad enough, when he said he'd like to take a look I almost refused.
Bowel doctors should not be good looking. Ever.

A sigmoidoscopy is where a camera is put up the anal canal to see the first part of your colon. My first examination was not as intense as I thought, but that was because I was in remission at the time and so the most shocking thing was actually being able to see your insides.
However to see the extent of my illness I had to have a colonoscopy. That my friends rendered me to tears and I was screaming "give me sedation". I was in full flare at the time and your bowel is not straight so you have to be moved around the table so the camera can go round the bends. I had to get a nurse to help me because the pain I was experiencing was unreal. They have to put air into your colon to open it up so they can see. I can hazily remember looking at the screen and seeing ulcers all the way through and when they took a biopsy it bled profusely.
The biopsy process is a little mind boggling and the only way to describe it is this little mechanic arm that shoots out opens, then closes shut and taking a piece of your bowel with it. Mental.

With every procedure I have, I am still not prepared for when doctors wipe my bum. Yes, they have to because lube is used, could you imagine a dry finger up your bum? No thanks, you have to make that procedure as comfortable as possible. the first time a doctor did that to me he patted my backside after, almost like a father does to his child. The only doctor that has ever done that is my surgeon, and as I trust him with my life, a little bottom pat is allowed from The Great One.

Itchy Feet

I was listening to this as I was typing this post, check it out :)

http://www.youtube.com/watch?v=gpQPSoB8kSY&feature=relmfu

There is a very high chance that this post will not make sense; an even higher chance that the grammar and flow will be even more off key.

Ladies and Gents, I have completely fallen off the band wagon and am walking down the road like Ron Burgendy shouting "MILK WAS A BAD CHOICE"

Running has come to a standstill. I have no idea what is wrong with me I just can't seem to lace up those trainers and get out there.

I do not have a reason. I've just stopped. Its weird. At this present moment I just don't seem to care. About anything. I'm plodding along with life and I can't help but hear this nagging feeling in the back of my mind that something's not quite right. I have no motivation for anything.

I completely know what it is, I got the same feeling when it was super close to my surgery. I want Australia and I want it now. Its so close I can taste it, to smell the salty air, to feel the sun gently warming my skin.
The monotony of my life at the moment is killing me, I need to do this to get to where I want to go but I hate the fact that I don't wake up in the morning and I'm like WHOOOO work! I can't wait to get my teeth into something that I love. It'll happen, but as my priority is Australia I just need up put up and shut up.

I'm sure that all the anxiety I am feeling is because I haven't been running. I hate what I'm about to admit but running gives me clarity and focus. The simple act of putting one foot in front of the other for a small amount of time allows my brain to just be.

I'm a stickler for over thinking. I will take a thought and bludgeon that thought until the little letters are splattered across a wall, a's and t's sliding down into a pool of "What am I doing?" and I'm sitting in the corner crying because I feel like my life is spiralling out of control.

I feel like I'm out of control most days. I don't know what I want to achieve any more, I don't have any creative outlets and I feel lost.

However, I'm sure that's how a lot of us 23year olds feel. No purpose, no direction.
I have an amazing amount of things to be thankful for.
For one, the amount of beautiful friends I have in my life. They say that you can count on one hand the people you can truly rely on. Pfft not me, give me another hand, or even my foot and let me count my toes. I have so many people that if my boat was sinking and I was about to drown, they'd swim by on a speed boat, pick me up and hand me a beer as we cruise into the sunset.
My Boy. My beautiful boy who means the world to me.
My family. I am truly blessed with an amazing dysfunctional family. We are messed up but I could find no greater pleasure than sitting with these crazy mofo's, cup of tea in hand, cracking joke about the most random of things.

Someone said to me once that they couldn't believe for someone who has had such bad luck, they couldn't believe how positive I was.

Its experience. I've had some pretty horrific things happen but when that ugly beast called life stares at me, growls, tells me that its going to eat me whole I stand up and stare it straight in the eye and say
"You can try, but you'll have to catch me first"

Lazy Girl Running

As I shut down my computer last night from work I thought of the evening that lie ahead. I figured I’d go home, sort out my flat as I hadn’t unpacked all of my things and settle down to a nice, aggressive football match.

I thought then knocked and rudely made a mess of my plans “You haven’t run in a week.”

Oh. Yeah. That.

 “This marathon isn’t going to run itself you know”

Yes, I am fully aware of that brain.

Dumping my belongings on my bed when I got home I stared at my trainers. My beautiful Nike trainers. The ones that I could not wait to test out when I had first brought them now lay in the corner of the room.

I sat on my bed and sighed. The trainers, bright orange, were coaxing me to go for a run. “I see; I was just a fad, an infatuation. You don’t really want to be a runner. You just dabble and pretend that you run on a regular basis!”

I gasped! “It’s not true” I said, “I’ve been running three times weekly since February!” Better than my sporadic attempts where I would run twice, finish the week on a long run and end up not running for a week after.

The trainers tried a different tact.

“You were so excited when you first got me, showing me to your friends, excited to be running in your new trainers, what about now?”

Indeed. What about now.

With a deep sigh I hauled myself off the bed and begun to change, promising myself that the sooner I had done my run the sooner I could curl up on the sofa and watch the football.

Off I went running beside the park, a run I had not done for a while because I lived in Stockwell.

Suddenly without warning I realised that I had tears in my eyes.

“Oh God, what’s the matter with her now?” My brain asked, “Body, you okay down there? Are you in any pain?”

“No boss, everything’s fine here,” Body replied drinking in the crisp night air

“She’s lost it; she’s gone cookoo, why are you crying?”

“Because I’m happy”

“Heart. I should have known it would have been you.”

“But brain just think, this time last year I couldn’t run through the park without stopping, now I’m doing a whole length around it! Don’t you think that’s an achievement?”

“Yes, but there’s no need to cry about it”

And the tears disappeared as quickly as they came.

One thing I have learnt about running is that it is an emotional journey as well as a physical one.

To know that two years ago I could have died, yeah it’s a bit dramatic but if you leave a dodgy colon in place it will eventually burst. I’ve gone from knocking around illness playground to being able to run 4.2 miles without stopping. So yes, occasionally I do get quite emotional on some of my runs when it hits me how unbelievably amazing my body is.

In fact, it’s amazing what all of our bodies can do. They are wondrous and you should never take them for granted. They can be pushed in unimaginable ways and come back even stronger.

Merh. I’m done with my “Oh my god” life is wonderful speech. It’s just really nice to be in a position where I can appreciate the amazing things in my life from a doing perspective rather than a wishing one.