Face of an angel butt of a septic tank.. according to my mother!

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face of an angel butt of a septic tank.. according to my mother!

Um, hey ya'll!
Ok i started getting symptoms of crohn's when i was 17!
i drank and partied, like all teenagers, i did all the stuff mother warned me not to blah blah blah!
i started getting pains every time i ate, it got so bad i would go days just eating loads of tiny bits of food because a big meal would make me nearly faint from the pain. secretly i thought i had cancer, i figured anything this painful has to be the worst disease i could imagine (cancer)
a docter told me i had IBS to go away and take peppermint capsules, drink herbal teas etc... unsurprisingly that didnt work!

I continued to get worsening symptoms, exhausted, no appetite, stomach cramps, period pains that crippled me, and mood swings at my time of the month that were beyond PMT!
In 2000 i weighed just over 6stone i couldnt stand up for long, couldnt cope with food smells so couldnt cook for myself and every thing went through me like a jet wash so i stopped eatting. my relationship broke down and i had to move into a womens hostel as my boyfrind at the time didnt understand or care.
It was while i was at the hostel that i met a lady with crohns disease, she was my key worker Jill Sears. I owe a lot to that beautiful woman!

Jill realised something was wrong but never told me her fears, she would just bring her extra food to work each day, food she knew my tummy would cope with, she kept a close eye on me and got me booked into the local dr. surgery that all the other girls used , the date was 07/01/2000, i'll never forget it!

I had moved away from my home town as the GP's were doing nothing about my illness, i had no diagnosis, and i could tell they were all just bored of my daily visits over a 7 month period.. i remember them giving me treatment for parasites as i had said i kept rare tropical fish... thats how much they were clutching at straws!
My new GP was a young guy, and a bit of a dishy dude too, oh the humiliation!
I started having bloods done, anti spasmodic drugs, steroids
, and mood stablizing drugs prescribed too because quite frankly at that point i was suicidally depressed.

I couldnt wait to see my GP he was always so kind and understanding, he'd let appointments run over so i could ask my questions and tell him my fears.

I started to eat more food, bigger portions and better food types, not the crap student junk all youngsters like to consume with reckless abandon like pot noodles and doughnuts!

My pains got worse but my dr insisted i keep eatting , he was quite strick with that and told me it didnt matter what i ate as long as i ate. He prescribed trammadole for the pain.
Trammadole was a double edged sword, i could cope with the pain of eating but it made me constipated , anxious and jittery.
But i was eatting and gaining weight.

On my 20th birthday i went partying with friends, i drank too much, just glad to be oit with my new boyfriend and all my pals who were pleased i seemed to be o. the mend.
On May 2nd 2000 i went to the loo expecting the normal pebble dash noisy food disembarkment and was horrified to look down and just see blood , lots of blood.. no matter how much i wiped i didnt stop bleeding, i left the bathroom and walked back into my boyfriend , white as a sheet i told him what had happened, bizarrly his mum had crohns....
He rushed me to A&E and we waited 17 hours for me to be assesed and put onto a ward . i was so weak and scared , at 3am the nurse tried to canulate me but failed twice on the third attemp she puckered my vein and gave up. the next day i was seen by a different nurse, the needle went into my arm first time, i had a saline drip set up and was nil by mouth for 3 days, i had a colonoscopy which reveiled what the dr described as cobblestoning, hundreds of ulcers in my transcending, descending, sigmoid colon and also fistula in and around my rectom.
A large section of ulcers had burst and bled, i had metronizadole antibiotics to deal with the infection. more prednisilone steroids, IV fluids and stay in for another 7 days.

Another brief spell of vomiting and the runs in september 2000 put me back into hospital,
This time the dr's realised i was hypersensitive to steroids... BADLY.. i refused surgery, the dr's were not impressed and sort the head psyhciatrists opinion on my mental health. my family interveined. i couldnt cope with a bag yet that was before i was even 21. My family listened , my twin, bless her amazing soul, stood by my decision and i agreed to spend the next 6 weeks visiting a psyhc ward as a day patient to be brought down from the steroid induced high.
Three years of agrophobia insued.

Part 2 pending, i gotta sleep x
 
Ha ha, what a great thread title ( thanks Mum! )You've sure been through the wringer and it sounds like there's more :-(Don't forget Part 2 so we can see how you are now.
 
Thanks Helen! Part 2 is pending , im feeling a lot more in control today so shall write more tonight , from my laptop not my mobile lol
Bernadette x
 
Hey Dette. I don't think I've welcomed you yet. Have I? :welcome: to the family. :D

I loved reading part 1. You have an extensive vocabulary and a fun wit about you.

Can't wait for the sequel.
 
Hi Angry Bird! i replied to a thread on inflixamab to you earlier, and hi Jessi too! glad you like the thread title, the fact that that title is actual a real life title that ive been shrugging off for a decade with family and friends, im real glad its finally struck an apt comical cord with you guys! :D xx

im working on part two on my desktop, hopefully there'll be less smelling pistakes n that one! :)
 
Hi Rachel, thanks for the welcome!

Ive never told my story to anyone i thought might understand and ive been so low lately that i was just grateful for a platform to get it off my chest, the title says just about what most people think about me so i thought everyone would find it funny!

also i think if you are new to a forum and you dont really talk medical jargon yet its less intimadating if you can read another persons realistic open honest out pouring. maybe i should have posted it in the book club forum instead!

Today im still in bed but the rest is doing wonders for my head! :) xx
 
Hi dette and welcome to the forum. :welcome:
It is a wonderful place where anything can be asked and there will be someone who knows the answer.
There is nothing to embarrasing to post.
Its brilliant and so theraputic to get your experience down on 'paper' and have a group of people who understand and accept you for who you are.
Look forward to reading part 2. :hug:
Sharon xxxxx
 
thanks Shazz... although you may regret that statement! Feeling are just feelings right, im sharing because i NEED to right now! xxx
 
:oops: Im NEW to this forum so please dont think im being self absorbed by writing this post, im just using a page entitled YOUR STORY to tell my story, i needed to get it out of my head.
Ive not had anyone to talk to about it and im hoping this is a place of mutual understanding of each others struggles , journeys , experiences and treatments.
Also we all deal with our illnesses differently and i figure if we are as honest about each detail of our experiences with it then the next newbies wont feel as scared or embarressed about speaking to others.

i joined a forum in 2000 to look into my illness and everyone talked in code, it scared the crap out of me, excuse the pun! CD is now just CD its not 'my illness' anymore, finally i can share the weird experiences ive had, with others!

So... CHAPTER 2

After i had to spend time with my friends and family and come to terms with the fact i wasnt in fact terminally

ill i just had a weird disease i had to go through the motions of working out how to start living again. My boyfriend at the time had opinions on what i should do, his mum had had surgery and he was of the opinion i should get it over and done with, i didnt know enough about CD, i want to have children one day, i didnt know what to think/do/feel anything. we broke up.

I went to places i knew and had frequented over the years but people treated me differently, i had lost so much

weight that i did look awful, i looked back at pictures and realise i was a shell of my former self.
One evening a guy came up to me in a pub and said to me ' your beautiful , is your name Annie?' i heard his mates laugh out loud, i'd never even thought for a moment people would laugh at me for being what they thought 'anorexic' .. i couldnt image anyone laughing at a person who looked so frail as i did then, but people judge, we all do i suppose!

That was 2001 I stopped going out more or less straight away, i felt people knew i was different, knew i wasnt 'like them' it wasnt even a physical thing it was an intuitive feeling.
If i ever had friends around they would bring me food gifts and i would have to start turning them down, i had started to develope so many intolerances i could hardly eat any of the things i'd previously enjoyed. so my friends stopped bothering, pressuming i didnt want
the gifts or them around. I stopped calling them, they stopped calling me.

I developed coping mechanisms, i would get a taxi into town at 3am and shop in the 24 hour tesco, i would let my befriender take me to appointments instead of struggling on my own, or getting family or friends depressed by my illness. i built up a world where i didnt have to deal with people. I went from 6 stone to 11stone in 18months on the predisilone, i struggled to exercise and the illness made me weak and too embarressed to try and explain what i was going through to anyone other than a counsellor.

My counsellor , although she never truly counselled me for my crohn's, she helped me to deal with the huge impact of being 'normal' to being a IBD sufferer, a wearer of an invisible lable. I used to joke with
her 'why me, i wasnt even allergic to anything at school, i had to eat everything, how can this just happen?'....
i guess we all relate to that one, some of us learn to accept it quicker than others.

.. Then i met a guy who had the patience to help me remember my old life, all the hectic wild stuff i used to get up to, my rediculously over the top sense of humuor, and my willingness to help and share good times and bad
with everyone and anyone. I spent time getting my confidence back, once i was physically well it was like i just woke up.
I had a bit of Cognitive Behavioural Thearpy (CBT) , hypnotherapy for my anxiety and the panic attacks i'd started to have whenever i was somewhere new and didnt know wher the loo was. i got a job, i went on holidays, i learned to surf, to drive, to do loads of stuff i had no idea how i would ever manage to do. because i started believing in 'looking for the sun behind the clouds' as Jill Sears used to say! (i know , what a load of happy crap!)

I had a narrowing of my iliem in 2004, i was back in employment for the first time in 6 years, i decided i wasnt going to opt out of my new career and let my CD take over.
i started using cannibis heavily for pain relief, morphene made me constipated and i couldnt do anything, cannibis stopped the pain just as well but also increased my appetite.
I would get excrutiating pain within 10-15 mins of eating so would wolf my food, pain was always there and throughout the day i was exhausted, wondering around with that glazed look of 'im shattered, i need a rest but nobody understands why so i best keep going... gotta be normal....'

Eventually i went in for surgery in 2007 as a last resort, i figured 'in and out, into recovery, within 6 weeks i'd be right as rain!'

when the surgeon got in there i had an inverted apendix (that was the blockage) and the scar tissue too, the key hole surgery was a tiny operation compared to what i could have had years earlier, I chose to wait until i was able to cope with surgery, mentally. i still dont want any more surgery but now i keep being told its the best thing , why drag it out....? Not by my doctor but family, friends, anyone i ever try and talk about it with!
Im on an elemental feed for now, and the not having to worry about dozens of food allergies does help tbh

I guess i want to know, do we all feel the way we feel about the body we are given, the shell we carry our souls in?!

its what works for us , not our friends or family or doctors , so is there anyone else that can make that decision any easier?... other than me???

Nope!


Starting on Sunday is the rest of my life.

IF the diet doesnt work then i will suck it up and i will have whatever other surgeries i need, right now im surviving.
To all of you who have had a stoma surgery already :medal1:, is it normal to feel this petrified of the idea, in truth it sends me into an anxious tearful breakdown STILL.
i KNOW how pathetic you think this story may sound in comparrison to what most have gone through, it actually started as a lifeline when i wrote the first bit! Like Shazz said its good to get it out... please dont judge me, or one another when these kinda cry comes out, i wanna be able to ask, not feel judged because im not as ill or havent had my illness as long (or dont live in cool neighbourhood :ywow: < yeah well thats my point, judging anyone when you know what its like to be judged, just dont do it , its not a karmaful way to approach things and we all know it hurts like hell)

I need to ask sometimes.... i felt like i needed you all yesterday, i wanted to just talk and talk... yes thats a side effect of steroids too!... im just lonely with this, thats all! and fricking scared!

:boring:

im off to bed, if you PM me i'll be online by lunchtime , thanks for reading, i know it sound like an emo wrote it, sorry about that! xx
 
Hun no one on here will judge you or anyone else that comes on here.
We are a family for each other. Only people who suffer can understand what it is like.
No one in your family, unless they suffer this disease, can understand. They can give you their opinion but thats all it is.

I dont think your story is pathetic. I think you are brave to have come so far and gone through so much without giving up. And also to then put ypur story on here for others to read and learn from.

At the moment I hate my body. I feel like it has betrayed me. But thats only because I feel like crap and have had a ***** day.

I hope you get a good nights sleep.

Look forward to reading more of your posts and getting to know you.

Sharon xxxxx
 
Dette, its ok to hate your body. I hate mine. I 'm a good laugh and giggle on here. It's what makes me keep on keeping on. But inside, well, if I'm honest, sometimes I just wonder. I'm human, so are you. All the fears, all the difficulties you've been through and are going through are just tough as hell. When I'm awake in the middle of the night or in pain...I'm not laughing. I'm wondering how I'm going to make it through the next day.

I guess the best part of this forum is, we dont walk alone. So, stick around and know that at least here, you will be understood. If you go through surgery, you wont do it alone. I'm thankful for this forum everyday. As you get well hopefully you will be able to give back to others going through the same horrific times you have been through. Giving back is very important. Sometimes it is what helps us to get through what is going on with ourselves.

You will overcome all of this. You are strong inside. You have what it takes.
 
Love your story! Love your personality! Just love you!!! Guess what? You've been judged, and it's all good, hun. :hug:

I really appreciate what you have written. You have been through a lot of hard times. And currently... on the pred... prednisone makes things bitter sweet, right?

It really is amazing, as you say, to hear from others who really do understand. We are all in this together, as Misty said. You're not alone anymore. :)
 
Thank-you Jessie, truly truly thank-you... i dont know any of you but reading all these posts and convos ect, its like hearing whats in my mind sometimes but said out loud.......... its such a huge relief! :) xxxxxxxxxxxxx :)

HAPPY NEW YEAR , i hope 2012 is what we all deserve it to be for each and every one of us! <3 x <3
 

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