Ileostomy Reversal.

Hello everyone. I'm now 1 week post surgery! Currently feeling like my insides are gonna spew out my belly button so this may be a brief post! I made notes on my phone through out it but some of it makes no sense and isn't possible to read by any human being. Wonders of morphine I suppose! Here goes anyway!

Surgery day. 6th September.

I arrived at the hospital at about 12 midday. I was feeling pretty chilled and hadn't cried since saying goodbye to my boyfriend the night before. Held it together pretty well to be honest! As I was back on my old ward I knew everyone there and everyone knew me! I was greeted bye big smiles and "welcome back!" We had a long wait then. So me being me had a nose through my surgical file!

Here's my file! Pretty impressive considering this is JUST from surgeries haha! This isn't even my NHS file this is my private medical file haha!

This was my room for the week! We'd just arrived so its tidy at this point haha!

And my view, this is all I saw.. apart from the bottom of a sick bowl..

I hadn't eaten or drank for over 12 hours and my parents decided to eat lunch in front of me. Fatties.

And although my boyfriend lives in Ireland and is poorly himself he still came over the 2 days before surgery and looked after me. He came with me to hospital in the form of this photo :) Kept me smiling.

Next we were told I wouldn't be going theatre until about 4pm. So Mr B (The surgeon) and the anaesthetist came and talked to be. Then I settled down for a few hours to have a nap. Then all of a sudden, about 20minutes later and nurse and member of the surgical team came in and said LETS GO! Sudden rush and panic I got changed and lightening speed, gave my Dad a hug and kiss and Mum and I headed down with them. I was so nervous but it was all so rushed I hadn't even cried yet! We went into the room, and they attached all the wires etc, they then inserted the IV, put in some really weird stuff that made me feel GREAT! (by this point I was crying my eyes out.. as was Mum.. its always the worst bit) They then got the white syringe and I was off with the fairys.. 

I woke up comfortable, not even a sore throat from the breathing tube! I looked across at the lady in the bed next to me and we swapped sympathetic "ouch" looks. After a while they took me back upstairs. By this time I'd had so much morphine I don't really remember much (good job I made notes ;))

This is my first IV where everything was going in as I couldn't drink anything just yet!

I do apologise for this picture, I have no memory of taking this... this is quite clearly what I look like on morphine!

And this is my poor tummy! Bye bye bag!! It's very bloody and gross but this was all within an hour of coming up from recovery!

I was also desperate for a wee! Bursting haha! So I was up and about within the hour but for some reason I couldn't wee! 10 hours later... I was still desperate for a wee unable to go! So the doctors and nurses came and put in a catheter.. an unpleasant experience consisting of things being shoved where things shouldn't be and being poked with syringes in places you shouldn't but after all that it was fine!

Day 2

I haven't much memory of this day, nothing much really happened other than pain, pain a bit more pain, feeling sick.. pain.. oh and more pain! I was on morphine, tramadol, paracetamol, buscapane and metoclopromide which is anti sickness used for chemotherapy patients to empty the stomach so there is nothing to throw up.

Day 3

I have one word for you.. Vomit.

I threw up pretty much from the moment I woke up.. to the half hour before I fell asleep. No exaggeration. I had at least 3 nurses, my Mum and then my Dad hold my hair back from me throwing up all over myself. And let me tell you when you have a hole in your stomach, throwing up is the most painful experience ever! Trying to stay conscious, aim in the bowl and put enough pressure on your tummy to relieve it of the stress is hard work! I was so exhausted! By the end of that day I had tried every single anti sickness the hospital could prescribe. A massive dose of morphine and metoclopromide knocked me out fully!

Had my wound dressing changed for the first time today as well. 

A..G..O..N..Y! 

They have to pack it, as it's open to encourage the wound to heal from the inside out.

Very unpleasant but its gonna be a daily job to I had to just get in with it and I felt too sick to argue.

Day 4

Today my bowels woke up! WOO! Means that I was allowed home! Although I wasn't cause of all the other stuff going on. They were gurgling like I've never heard gurgles before. At times it made me jump cause I'm so not used to it! Very weird! I also had to have my IV changed I was still so sick and nauseas all the time. And the cramps from my stomach waking up were the most painful thing I've ever experienced. It got so bad that I shouted that I couldn't do it anymore. And I honestly at that point wanted to give up. I felt so hopeless and in so much pain! I couldn't cry properly cause it hurt so badly! In the end I had the doctor and nurse hooking me up to oxygen, filling me with bottles and syringes. On this day alone, I had 23 needles poked into me for different reasons.

Day 5

I was up and down to the bathroom all night long. Having not been to the bathroom as normal people do for a year and a half it was a horrible experience. And I had the sorest bum ever! I just wasn't used to it. It was alien to me! I hadn't eaten anything since the morning of day 3 and still had no appetite so there was nothing for my stomach to chew on so to speak, so it was just chewing me basically and it hurt! I was more mobile today! I'd had a shower the night before so I was feeling more human, and starting to be eager to go home! Still feeling so so sick though!

Day 6

Mr B said that if I had eaten, drank enough and been to the bathroom walked around enough, I could go home. So I stuffed my face with a panini, a doughnut and soup. A litre of water. 3 laps of the ward. 4 trips to the bathroom and they said I could go! Over the moon!! I felt awful still but you always feel better at home! The car journey home was awful but not as bad as I thought!

First day for 2 years wearing a normal length Tshirt! Yay!!!

WARNING: DO NOT SCROLL ANY FURTHER IF YOU ARE SENSITIVE TO CUTS AND BLOOD.

This is what my wound looks like 1 week post surgery. This is it unpacked and cleaned. 

And this is it on Tuesday 15th September. The skin around as some of you may recognise is starting to look like it did when it was bad around my ileostomy. It seems to have come back and is driving me mental its so sore! I also have a tennis ball size swelling at the top of the wound. So if you are getting annoyed with my moaning of pain on Facebook. Put this in your pipe and smoke it!

Finally I would just like to say thank you to my family, Gibbs, Gaunt, Myers' and Nauls. I love you all dearly, thank you so much for being so supportive! Also a big thank you to my boyfriend who's had to put up with my moaning about this and morphine messages at ungodly hours. You've been so wonderfully supportive through all of this. I hope I can be as supportive to you. xxxxxxxxxxxxxxxxxxxxxxxxxxxx

Freaking OUT.

September 6th is getting closer. I am so scared!
I'm happy how I am. I can live with an ileo quite happily.
I can't go back to how I was. I don't think I could physically handle it.
I was housebound for goodness sake.
I don't really have a choice though, theatre is booked and there is no turning back.
I just want it over with now so I can move forwards.
I've spent the last year and a bit freaking out about this and it's only 3 weeks away.
3 WEEKS!
I've not really managed to voice to anyone how I feel. My family just think I'm being snappy and a bit grumpy, like, whats new?
I can't stand the unknown!
In my first surgery they removed more than they planned due to how bad it was in there.
So the results of this reversal are a complete mystery.
I'm also getting a lot of sickness at the moment, anything I eat, drink makes me feel sick, I've not actually been sick, the ileo seems to take care of that. But I feel so sick it's hard to speak sometimes. Theres a pain on the left upper side of my abdomen just under my ribs, and the pain sometimes goes through to my back. I'm losing weight cause I can't eat (I'm pretty pleased with this fact but not how I'm losing it). I just don't know who to tell or talk to about it!
I'm going to the doctors tomorrow to see if they can help if not I will have to speak to my consultant.
I don't give a damn what they do as long as I don't have to feel like this any longer.
I feel like I'm standing on thin ice thats about to break underneath me.
And I am honestly, so, so scared.

Eye Balls!

If you have me on facebook, or twitter you will already know that I have some massive horrible painful blister on my eye ball!
I have no idea why it's there. Or how its even possible!?
But I googled it and it does happen and its quite common!
Who knew?!

I also seem to get a lot of stys in my eyes. I get through a lot of mascara cause of this as don't want to spread it and it's getting expensive!
I also seem to get scab type sore bits and little swells at the lash line that when I knock off the scab accidentally can bleed!

I've also developed a lazy left eye when I get tired! So now have glasses for when I feel a bit cross eyed at night! Haha!

All due to the dreaded PREDNISOLONE!

I'm pretty sure for the crohnies reading this that word sends fear through there whole bodies.

For those who don't know its a steroid used to kick crohns, colitis etc in the butt! (no pun intended)

I've been on it many many times and at strong doses!

I've had it intravenously 4 times now, and been on tablet form for over a year.

It turns me into an absolute MONSTER.

The girls from college will be well aware of this.

I was angry, rude, violent, hungry and on the verge of strangling anyone, and anything!

After being on it for so long. Even though I've not been on it for a year now (WOO) I'm still seeing the effects.

It's RUINED my body!

Crohns stunted my growth, I had no hips, or a waist etc. People thought I was anorexic!
Well, the pred sorted that out! It turned me into a right oinker! I've lost it all now though even though I still see myself as fat. But even when I was skinny and ill I thought that I was fat! I used to use laxatives to try and make myself thinner... and smoked instead of food. Bad I know, I learn't the hard way!

Even though the exterior Amy looks normal and healthy now. The interior is very much still broken. Just ask my bones. They're rubbish! I'm currently having physiotherapy on my knees. And my hands and thumbs get very painful!

It's good to know that there are tonnes of other crohnies out there just like me!
I'll stop now with all my brokenness cause if I continue this could be an extremely long post!

Thanks all for reading my witterings! :)

Do you believe in guardian angels?

I know it sound's silly.
Who actually believes in things like that?
I certainly didn't!
But, then everything changed and I now do!

4 years ago, my wonderful Grandpa passed away, very suddenly.
I hadn't done my GCSE's and hadn't been diagnosed with crohns.
He was the person who taught me to paint, to be an artist!
I went on to be an art student at college and did 3 years of it before I had to leave due to the big crohns flare.

In the months after he passed. Me and my Dad typically bickered like children arguing constantly.
He's managed to produce a daughter who is as equally as stubborn as he is! Anyway, we were at my Grandmas and I picked up a new book off her book shelf about old phrases and there meanings!
I then dropped the book on the floor. Grandma hadn't even opened it yet just shoved it onto the shelf! So yes, I dropped it and it fell open onto the page with Quarrel - a disagreement or argument. With a perfect little white feather tucked inside it. We all thought this was very odd. Kind of comforting!

After that, we then began to find feathers everywhere! In the kitchen, in bedrooms. There was no way they could have got there.

When I was at my most rebellious, My Mum had a dream that Grandpa told her I was misbehaving and doing things that I shouldn't be! Which I was! And was incredibly freaked out when she told me that! I felt like I was being watched and that I needed to be more sensible!

I can't quite remember now if it was my Mum or Dad who dreamt it but my Grandma was going in for surgery and they dreamed my Grandpa said "she's forgotten her slippers" and she had. She had forgotten them.

I was struggling at college with a load of work. I came in after a crohns flare up having been off to find a beautifully white feather in my pencil case.. which had been in my locker. No one had a key but me. And I had it with me all the time! I asked people if they put it there to wind me up but no one had a clue!

Leading up to my surgery I found feathers everywhere too. All of them perfect, and white.

Last weekend me and my Dad went to my Grandma's to check on her pond as she was visiting my Auntie. And there were feathers literally ALL over the garden. All around the pond. Now, anyone who knew my grandpa knew he loved his garden, and his pond! The pond was blocked up at the filter with only a little water left in it! It was like he was telling us MY POND, MY POND!

And the most comforting yet. When I went to see the surgeon on Tuesday. As I was walking in, I looked up. And saw a white feather floating down above my head! Mum caught it for me and I kept it in my bag! It's now in my room in a little box.

It's like he's watching over us, making sure we are all okay. Leaving little feathers to show he's still around!

Once is nice, twice is coincidence and more than ten times... well.. you tell me!

Hmmm.

Feeling a bit lost at the moment! Feel that now my surgery date has been confirmed as September 6th this year. My life has kinda paused again. Well, its not really been on play at all for at least 2 years...

I so badly want to move on from all this. I love my family to pieces but they're my constant company now as all my 'friends' were crap and ditched me when I was at my sickest. 

I've kinda lost faith in people and myself. I don't feel like me anymore. 

The old me had bright red hair. Was incredibly over confident, loud and mouthy. Wanted to be centre of attention all the time. And would dance in a room and wouldn't care if people watched.

The new me, finds the thought of that so scary.

This was me...

Yep, that was me! Crohns skinny too.. But I felt to confident with red hair!

I now have my natural hair colour as all the dyed hair grew out!

So thats one part of me gone!

I'm thinking of putting a blonde coloured bit in my hair. In attempt to 'me' myself again.

As my hair has natural blonde highlights I wanna keep it natural-ish.

I don't really understand the point in this post, and it's probably wasting your time reading it. But it helps me to rant it all out. This is effectively my diary so prepare for rubbish like this!

I have another more interesting post for later! Need to think more into it though :)

I'll give y'all the title.

Do you believe in guardian angels?

:)

Surgery Appointment.

So, I've just got back from seeing Mr B. He's so lovely! Honestly trust him with my life.. which is a good job considering my life has been is in his hands HA.
Was a quivering mess when we got out. Legs like jelly and head spinning.
Held it together though through the meeting!
Heres what was said! Hope it makes sense, I'm still pretty numb about it all.

1. What will the wound be like?
The wound I'm going to have is an open one. As the stoma is a hole in my abdominal wall you cant close a circle into a straight line, he said this would mean the wound would be 4 times the length of stoma and create too much scar tissue and damage. So they're going to do a draw string type thing around the hole after they have sorted the intestine out. Then leave it open and wick it, wicking is different to packing as they won't ram god knows how much stuff into me. Just enough to catch all the yucky stuff! It's also a lot safer, if the wound got infected it would be easier to go back in and do whatever they needed too!

2. How will it be done?
It will be done simply through the hole where the stoma is sited. Very rarely they need to open up over previous scars to do it properly but as I'm 1 year post surgery everything should be less stuck together.

3. How long is the surgery?
The surgery takes about 45minutes to an hour. And it will be a minimum of a 5 day/night stay in the hospital if all goes well.

4. Pain relief?
Due to the fact that my stomach muscle wall has been apart for a year, it will feel like I've been kicked by a horse, plus the wound pain etc. So I'm going to have my beloved PCA back for morphine. With lots of antihistamines for the morphine itch!

5. What about tubes and lines?
There will be no catheter into the bladder. I forgot to ask about the neck line, but hopefully not cause this was horrible! They're not sure about an NG tube (this goes through the nose and down to the stomach) at this time, hopefully not though.

6. Will I need a special diet?
As currently I'm on a really strict diet. Hearing that after I've healed I can eat whatever I like is brilliant! Bring on the steak and jacket potatoes and salads!

7. How long before bowels wake up?
We say wake up as whenever the bowels are handled they paralyse themselves. Stop working completely. This is the biggest issue for me, I'm so scared! He said the first time will probably happen and I won't have a chance to get to the bathroom or do anything about it. This is 100% completely normal and in the vast majority of cases, expected. Fingers crossed that doesn't happen to me.

8. How long will it take to settle down?
We don't know. Simple answer. We don't know because everyone is different and they also removed more of my bowel than expected. Hopefully it won't take any longer than 6 months.

9. Back up plan?
My back up plan is a permanent ileostomy. If all else fails! This however will NOT cure me. Crohns is incurable. Within a year after surgery there will be visible signs of crohns at the rejoin again. And they didn't manage to remove all of mine in the first place so more surgery is likely in the future.

10. Will I have sickness?
Yes, from day 2-4 post surgery it's expected. It should settle down though and there are medications to help sickness. I hate being sick! I was always sick when my crohns was bad! The amount of times I've puked in public.. ha.

So, that's basically it, my list of questions I took and the answers.

Surgery date is September 6th 2011.

Surgical Appointment, Reversal.

So, I'm getting ready to go see my surgeon. I'm starting this now as I doubt I'll be able to do much but write what has been said in the appointment.
Private medical is honestly the best thing EVER. After spending nearly a week on the surgical ward in Feb. Having an op and staying there is a big fat, ahhhh hell no!
I'm kinda looking forward to seeing all my nurses again in September! They're so lovely over there!
And also with a private appointment today, I can take as long as I want to have all my questions answering. Instead of the NHS appointment where there is 20 other people waiting outside each given 10minutes to get out what they want to say!
So anyway, I have my dress out ready, my A4 page of questions written. So hold tight! Cause there is one hell of a ramble on it's way!