Question Time with Margaret

Hey Guys!

Like I mentioned in a previous post, I have had a few questions about stomas, ileotsomys and Margaret and I know it can be really confusing. Even I didn't fully understand everything until I had researched it really thoroughly and even now still come up with questions.
So I thought I would try and explain it all to you. I have used some photos to explain, I don't think any of them are gross but if you are a real wuss then you may not want to scroll down! There is a drawn diagram of the procedure, a picture of a healthy stoma, a stoma after surgery and some of the kit, including bags. No poo I promise!
I have said below each photo whether it is me or not, as some of them I have used as an example. 

I have had a loop ileostomy.
This is the type of ostomy that can potentially be reversed. My surgeon pulled up a piece of my intestine through my tummy to the outside world. He then put a little rod under the loop and cut it in half; both ends then get sewn down leaving two openings. One is attached to active bowel connecting up to my mouth. The other end connects to the rest of my now un used intestines. The idea being that the un used section, which is where my Crohn's is, is rested, hopefully clearing up the active disease. The rod is taken out and you are left with one main opening that 'output' comes from and a smaller, flat opening that is not used.

Originally I thought that it was a little tube or something man made that stuck out of you, but it is my real intestine. The bit of intestine that sticks out is called a STOMA. 

The nurse described it to me like the inside of your mouth, it is all the same from there, throughout your whole digestive system. That is why it is pink/red in colour and moist. 

Not me

Here is an example of a bit of intestine sticking out of a tummy. All stomas are different sizes and shapes, so mine may not look like this when it is all healed but this is a nice clear example of what they look like. 

After surgery they look more like this, this is a bit more like what mine currently looks like but once it is all healed it will be more like the one above. Not too pretty!

Not me

Due to it being a loop ileostomy, all of my intestines are still in there. If you have a permanent stoma fitted then that all gets removed.

Whilst you have a stoma, that is basically where you poo from, but instead it is called 'output'.
You have to wear a bag which is stuck on to the surrounding skin to catch all of the output, there are so many types of bags out there and every individual finds one that they get on with. The difference between the bags are the size, shape, where the odour filters are and whether they come in one or two parts, but they all do the same thing.
Most people wear one with a beige cover as starring at your poo all day is hardly pleasant! The bag sticks to your skin with a hole in the middle for your stoma to poke through, you have to cut the hole to the right size for your stoma, which isn't hard at all. Once the bag is on it is up to me how many times I change it, some people do it every day, some a few times a week, some twice a week. Every time you change the bag you have to clean the stoma, which is very weird! There are no nerve endings on the stoma as it is your intestine, so you cant feel it at all! You can strangely be quite rough with it and still have no feeling. Once you remove the bag you through it away.

You have to empty the bag whenever it gets to a third/half full, with the type of bags I use this is done by undoing the bottom and emptying the output in to the toilet, before cleaning the end and doing it back up - the whole things takes 3-5 minutes. 

When I left hospital I was sent home with a bag of goodies and supplies. I was given a number of different bags to try, soft cloths to clean it with, curved scissors to cut the bag to size, odour spray, adhesive remover and some other helpful tools for the job! 

Now I have called my stoma Margaret, but I refer to the whole thing including the bag under the same name as it is a lot easier.
Alot of peoples reaction to me having Margaret is, "Oh but then you'll be better". But having a bag will not cure me of having Crohn's. I still have to take daily medication to stop it flaring up and I will still always have the disease. There are issues and problems that come with having a stoma and my Crohn's still needs to be kept at bay. It should however make my quality of life a lot better!

Having a stoma is not an outcome for everyone who has Crohn's; not by a long way. Some people have to have different types of surgery, such as a resection, and are then given a bag to allow the area to  fully heal. Some people, like me, are given a bag to rest the flared area. Others are given a bag as an emergency.

I have been asked how I feel about having my bag seen by other people. I don't mind, I am happy with showing people if they want to see. As it is on my tummy and relatively flat it will be hidden by clothing most of the time. The main time that I will have to choose whether my bag is seen is when I go swimming or on a beach. I love a bikini as much as the next girl and this is something I have spent a bit of time thinking about. I have bought a gorgeous swimsuit to wear for times when I do not want the bag to be too obvious, there are also high waisted bikinis out there. Personally I do not feel too worried about people looking at my bag, if it can be seen, I am a bit more concerned about upsetting or grossing out people around me. However, I do think that if I am confident and wear my bag with pride, most people wouldn't even look twice. I think I am going to do and wear what I want, and what I feel comfortable and happy in, regardless of what others might think. But by doing this, I have to be prepared for some stares, questions or comments. 

I hope that clears a few things up. If anybody has any other questions then please do ask away!

Lots of love!

XXX

Home Sweet Home

Hey Guys!

So I am home! It feels so good to be back, I of course had a McDonald's once home, it took me a good hour to eat but it was so incredible. Double cheeseburger, large fries and a coke in case you are wondering!

Mine and Matts home faces!!

I had a long nap on the sofa with my quilt once I had eaten and just relaxed the afternoon away. Dad then cooked my favourite meal for dinner, home made pizza. I tell you after living off nothing much more than toast for a week, Margaret was not going to know what hit her. Poor thing! Again I was the slowest eater in history but it was so good. I set my alarm for the middle of the night to make sure it was all okay, as a bag explosion would not have been pleasant for either Matt or me on my first night home!

Yesterday Hilly (Becky) and Nash visited me, which was so lovely. I hadn't seen Hilly in so long and she came bringing gifts of beautiful flowers, cards, the best playlist of songs ever and a magazine with a free puzzle! She knows me too well, & me and Nashy spent a good while trying to do this children's 60 piece puzzle. It really should not have taken us as long as it did, and we were a bit too proud of the finished thing!

Hilly was apparently not photograph ready

There also seems to be a bit of a theme when Nash comes round, it didn't take long before she was rummaging through my wardrobe yet again! This time it was to find a dress for Ascot! Lucky girl! She ended up leaving with three of my dresses, ready for a trying on session at home; lets all hope I get to see them again! 

My beautiful flowers

It is so nice to start getting all my lovely friends home from Uni. They are all now graduating and I am so proud! It only seems 5 minutes ago that they were all off to Uni! I am a year behind my friends as I did an extra Art Foundation year before starting my degree so still have a year to go.

Hilly is an illustrator, and I love her work so much, you might have seen the card she made me in a previous post. http://www.hillustration.co.uk/ 

Nashy is interested in interior design and architecture, and is part of an exhibition coming up in London soon! http://www.behance.net/charlottenash

Check out both of their work if you fancy a little mooch, they both have some amazing stuff!

I also had a very exciting post day! Three cards and a parcel. I opened it up to find a beautiful book, Grace Coddington's Autobiography from my lovely cousin, Nic. It is so up my street I can't tell you, I love it, it is full of wonderful hand drawn illustrations throughout. It is such a perfect gift for whilst I'm lying in bed!

Harry visited me again today, a week after last time! So much has happened in the past seven days, it seems ages ago that I was having my starvation day, yet it has gone so fast. I have been feeling really tired today and needed a long nap this afternoon. I know it is only to be expected and I really do have to be careful not to run before I can walk! One big improvement is my knee, I am now free walking with no crutches which has made a big difference. I still have to take stairs one at a time and I can't kneel or bend my leg fully but at least I can get around! The stoma site is itchy, which I have been told is sign of the wound healing but it is driving me mad! It is also really quite sore and you don't realise how key your tummy muscles are until you try and move. Having a laughing fit is insanely painful!

I am also so hungry! I didn't think I would have much of an appetite but believe me, I do. Apparently this is because the intestine that is in use is in super mode and everything I eat is pretty much going straight through me before I have had enough time to absorb it properly. Not that I am complaining, after a week of having little much more than four slices of toast, I am happy to eat everything in sight!

I also thought it might be a good idea to answer questions about having an ileostomy and Crohn's. I have had a few questions already and I know even I get confused by it all. So if anybody has any questions then please get in contact, either by leaving a comment or through Twitter etc. No question is too gross, too silly or too obvious and I'm sure whatever you might be wondering, most other people are too! Once I have a few questions I'll do a post for you all!

Lots of love

xxx

Hospital Stay

Hi guys!

Whilst I was in hospital I kept a diary of what was going on every day & here we have it. 

Friday. Day 2

I woke up and didn't have a great morning. Margaret continued to be a pain and was very sore, the liquid morphine didn't seem to be doing much of a job so they swapped me on to tramadol. It did really help but made me feel so weird, my limbs felt like they weren't attached to my body and my head was all squiffy. At one point I lay there trying to work out why I couldn't lift my thumb, until I realised a while later that I was holding it with my other hand... Whoops. Every time I closed my eyes I thought I could hear someone whispering my name, apparently some people take Tramdol recreationally and I can't for the life of me understand why! 

I was also told I wasn't allowed any food, which was awful having not eaten since Tuesday. 

After a while I started to feel really sick and shaky, I truly felt awful! Mum and Dad came to see me but I felt horrific, the nurses thought it might be a mix of the anaesthetic and the strong pain killers. Luckily they gave me an anti sickness drug before I projectiled across the ward; which would not have been a good look. I tried to sit up twice, both times feeling very faint and my head was swimming, they had to lie me back down and give me oxygen. All very dramatic for just sitting up in bed. Eventually on my third attempt, after feeling a lot better I made it in to the chair next to me. It's so weird that the smallest things like sitting up or pulling yourself up the bed can be such a challenge. I felt like a massive baby. Mum and Dad left after a few hours of chatting and meeting Margaret, then Matt came by to spend the evening with me. We were both so exhausted we barely spoke and just led there not doing much but it was so nice to have some company. The whole day I felt pretty rubbish but I was told if I could walk around my bed and to the toilet I could have the catheter removed, which I hated.

Ouch!!

My view!

Saturday. Day 3

I had a bit of a better nights sleep and was woken up by a nurse with a menu. I yelled, "Can I eat?!"  

She said yes and handed me a pen to costs off what I wanted. It was then she told me that I was only allowed 'Soups and Puddings' & maybe mash potato. My heart sunk. Going through the list, the two soups for the day were asparagus and celery. Both sounded horrific. I couldn't have any puddings as they were all dairy filled and the mash had milk. For breakfast my only option was porridge with water. I felt so down and so hungry I welled up with how overwhelming it all was. 

Then a lovely nurse came to see me and I explained how hungry I was, she then agreed that considering the stoma was working and I was so hungry that I could have some toast. I could have hugged her I was so happy and even happier when she also said my catheter cold be removed! 

Once this was done I did have a panic for a few hours that I couldn't wee. I actually developed a fear of weeing, I had stupidly googled "unable to wee after surgery" and was met with horrific tales of life long problems. I developed stage fright in a locked bathroom... Hours later my worries were banished and I was actually able to wee like a normal person.

My first meal in 4 and half days

This ladies and gentlemen is the lunch that arrived... that is in fact mash & 

asparagus soup. I only managed to dip my finger in the soup and couldn't possible mess up

that beautiful ball of mash...

Matt then came to see me, bringing with him the best surprise! My brother Sean and his girlfriend, Caryl all the way from Wales!! An absolute day maker, Matt planned it all and had driven to Cardiff to pick them up just to visit me. Sean bought with him some lovely goodies like ice cream and jam and some pretty cool presents! A bunch of stickers to decorate my bag and my carry case and some glow in the dark stickers to decorate my little bay with. They now cover my cupboard and line my curtain rail. They all absolutely made my day and made me so happy. They spent most of the time trying to see what they could play with and what they could eat and drink for free. Including pumping an air pump into each others faces and smugling out nutrition milkshakes.

Matt also felt incredibly jealous of all the obs I was constantly having done so asked my lovely nurse if she could have a go! She let him have his blood pressure, oxygen levels and heart rate measured, which made him happy. They were all very healthy and he boasted about how much better they were than mine, to which the nurse did point out that he wasn't an in patient. I would have been worried if they were worse than mine!

Mum came up afterwards and she helped me walk to the gardens, it felt so incredibly good to be outside, breathing in fresh air. At this point I felt completely overwhelmed, I was tired and had also just emptied Margaret for the first time. I started crying, and didn't stop for a good hour or two. I think it's the first time I have properly cried since I found out about Margaret and I just let it all our. I have been brave and not really thinking about my life with Margaret for so long. It is so daunting and scary to think this is my lot, this is my life. Its not anyone elses and its probably not temporary, it is something I am going to have to live with. I have no choice. 

Mum stayed with me right until the end of visiting and one of the student nurses was so lovely, turns out she was a few months younger than me!! I snuggled down, exhausted and emotionally drained and watched BGT and Pretty Woman. 

Sunday. Day 4

At 1:30 I was woken up by a very poorly fellow patient. She was surrounded by machines and Drs which was really quite scary. I couldn't go back to sleep until I knew she was alright so spent a lot of the night awake. I was woken up at 7:30 with a nurse coming to take my blood. A wonderful wake up call eh!! The Drs came round and said I was doing really well and that they could take my cannula (thin tube in my hand) out. He said I needed to meet with my stoma nurse tomorrow and that once I could change the bag on my own then I could go home!! The nurses were shocked that for the past day I had been getting by just on Paracetemol, clearly I have a high pain threshold. I managed to shower myself for the first time which felt amazing and once I was all cleaned up I had a lovely snooze. I was woken up hours later by a nurse telling me my lunch was cold and they'de be taking it away soon.  I was livid. Why nobody thought to wake me up when it first came, I don't know. I sat there nibbling on cold roast potatoes, having to leave the pork covered in cold gravy.

Luckily my Dad came to see me which cheered me up and we chatted for hours until my Mumma came with the best gift ever. McDonald's Chips!!! We snuck out to the garden and I chomped away. It made me so so happy to eat something nice and salty although it probably wasnt the best for me!

I am having to to eat slowly and chew everything until its mush as this helps my tummy digest it. Matt came and took over from Mum at about 4 and we both crammed ourselves in to my hospital bed to watch Love Actually. It was lovely to try and relax, especially now there were no tubes coming out of me anymore.

Monday. Day 5. 

I woke up at the latest time so far of 7:30. My nurse had decided not to wake me for my obs as I was pretty much fine and I just wanted sleep, which was nice of him! I got myself up, showered and had a wander on my own, wanting to be as well looking as possible before the Drs came round as they are the ones that decided whether I could go home! Eventually they did come by and said I was doing brilliantly, Margaret was working really well and the wound site looked healthy so if the stoma nurses were happy then I could go home! I was so happy! I rang Matt and Dad immediately to work out who could come pick me up and then stared at the clock until the stoma nurses came round. The stoma nurse was brilliant and went through everything with me one more time, I also had to change the bag myself which I did. In fact she said I was a star student! She cleared me for going home and Matt was on his way! Whilst I was sat there I received a photo of Sean, who was apparently obsessed with my wheelchair.

I packed all my stuff up and once Matt came, made my escape! Miss H gave me a hug goodbye, she had been so lovely when I was feeling my absolute worse. I said goodbye to my lovely fellow patients and hurried out the door before they changed their minds!

It is so great to be home, I can't tell you!
Thank you to everyone who has been in touch or who were thinking about me whilst I was in hospital, it really boosted my mood and kept me going when I was feeling my worst. There are some amazing human beings out there!!

Lots of love
XXX

The Big Day

Hi Guys!

I'll start off the post by saying I'm doing okay, as far as I know the surgery went well. 

I arrived bright and early at the hospital at 7:30am, I was worried I was going to be late but Mum did point out, they couldn't start without me! I managed to crutch my way into the surgical admissions ward and was in the bay within minutes. My nurse was lovely, she did my obs and gave me my gown ready for the op. I met with Mr Surgeon who went over again what the procedure would be and then met Mr Anaesthetist who again was so kind. He was funny and was happy to have a bit of a laugh; he, along with my nurse, definitely put me at ease.

Mr Surgeon came back with a friend, Miss Student Dr, he asked that I explained my Crohn's story to her to give her a bit of a back ground on everything, before she watched my surgery. 

At 9am I was wheeled down to surgery. I didn't cry saying bye to Mum which I was very proud of. My lovely nurse made sure I was all nice and settled before leaving me in the anaesthetist room. Mr ANaesthetist got my cannula in first time & hooked me up to lots of machines. He then explained it was sleep time and as he put the medicine in my hand he said, "a nice gin and tonic in the morning". I a bit too enthusiastically replied, "Oh that sounds good to me!"  

The last thing I remembered was having the oxygen mask put on and explaining that my new buddy would be called Margaret. 

I woke up in recovery really quite scared, cold and in pain. Next to me was a man with a really kind face who assured me he would look after me whilst in recovery and make sure I was okay. He gave me four blankets to warm up and slowly upped my dose of morphine. That along with some liquid paracetamol really hit the pain on the head and after about 45 minutes he thought I was ready to head up to the ward to continue with pain relief and get settled. The ward had other ideas... There was no bed for me. 

At first I didn't mind, but by hour 6 of lying in recovery, watching patients come in and out and staff start and end their shifts, I had started to have enough. The recovery staff were incredible. I was never once left on my own, always having someone sat beside me to chat to. I was allowed water to drink as my mouth was so dry I was eventually slid on to a bed rather than a surgical trolley. Everyone made sure I was okay and comfortable, especially the kind faced man (Mr I) and his colleague Mr C. 

At about hour four, Mr C turned to me and said if I was there much longer he'd get me some scrubs and find me a job to do. Brilliant I thought! By hour 5 many jokes were being made about how many weeks I had been there. The fact I was stuck in recovery meant I hadn't yet seen Mum or Matt, I was worried they wouldn't know I was okay and was desperate to see them! I also had not dared look at Margaret, different nurses came and checked on her and said she looked brilliant but I still couldn't bring myself to take a peek.

Eventually 6 hours after surgery I was found a bed and was wheeled up to my bay. Once there my nurse, Miss H, did my obs again; I swear they were all obsessed with my blood pressure. I also realised how much I needed a wee, it was no surprise really after the amount of water I had sipped through. Miss H slipped a bed pan underneath me, which was the weirdest thing ever. Trying to pee whilst sat on a flat bucket type thing whilst lying near on horizontal is not natural. Nothing happened... I was sure it was cos of how weird the whole thing was but was told, after an ultra sound of my belly that it was retention caused by the anaesthetic. Fantastic! This only meant one thing.... A catheter. 

Whilst they got everything ready I was allowed to see Mum and Matt for the first time, they had started to get worried about me! Miss H and a fellow nurse then returned with their tools and Mum and Matt made a swift exit. So there I was 10 minutes after meeting them, lying with my knees spread, having the catheter fitted. Like I have said before, there really is no dignity when you have Crohn's Disease. Both nurses were so kind though and I didn't feel too embarrassed at all. I think I was quite high on pain killers as I told them I felt pregnant with wee and what a relief having my wee baby would be. Once it was all done and the bag started to fill one of them proclaimed, "IT'S A BOY!".

It was after all of this and once I was all tucked up ready for Mum and Matt that I had my first look at Margaret. Here we were meeting for the first time and I was pleasantly surprised. She is quite a cute little thing, or as Miss H put it, a lovely little tomato. And that is exactly what it looks like, like half a cherry tomato stuck on my tummy, surrounded by a bag. I was also fascinated that she was so soft and squishy and I could poke her without feeling anything. Mind blown! 

A momentous occasion then happened, Margaret farted for the first time. I felt like a proud mother and found it very funny. Obviously like everyone else my gut still produces gas, but now it goes into a bag, luckily without smell. I hadn't realised that she would be quite so noisy and for the few hours she continued to make the funniest noises. Apparently this all slows down once she is settled! 

I had my pain killers topped up a couple of times and tried to relax with Mum and Matt holding my hands until it was time for them to leave. This made made cry a little bit, I was exhausted and in pain and didn't want to be left on my own but I sucked it up and was okay in the end. I met the other ladies on my little bay in the ward, who are all very nice and friendly, which makes things easier. 

I have since been trying to sleep, it is now 4:42am and I would guess I have slept an hour at most. My body is incredibly un comfy and Margaret is giving my jip. I can currently only lie on my back, which I really hate, and my knee and the catheter tube also makes it tricky to get in a good position for sleep. My bay is so quite, which is such a bonus! So far we have no snorers, just some heavy breathers; which is weirdly comforting as it reminds me of Matt.

I am so sorry this is such a long post! Thank you all for reading and for everyone who has sent me good look messages, everyone being so kind has really got me through all of this. I will carry on updating you all as much as possible, as me and Margaret get to know each other. 

Lots of love 

XXX

My bags are packed... I'm ready to go!

So tomorrow is D-Day & I am starving. It is now 26 hours and 20 minutes since I last had anything to eat. I actually feel sick, I am that hungry and all I keep thinking about is yummy food. I think it is made worse knowing that after the operation I won't be eating for a bit. Hopefully I won't be very hungry anyway, but knowing me this is not likely!

Last night Dad made me my favourite dinner, home made pizza but that seems so long ago now! I have been drinking lots of juice and lemonade but no where near as many fluids as suggested but half a litre every half hour is crazy!

I have also carried on having a little practice with a fake Margaret to get used to having a bag on and how it will look under clothes. Surprisingly, once she was stuck on I didn't feel her at all and sleeping with her there was also not a problem. I also had a nice relax in the sun with her there, I was a bit concerned that she would heat up but she didn't at all.

I was pleasantly surprised with how well she was disguised under clothes, you couldn't see her at all. 

I also had a lovely visit from one of my best friends, Harry. He came by with a beautiful bunch of flowers! I am honoured as they are about the second bunch he has ever bought anyone, they also happen to be my favourite lilies! Although that was definitely luck more than anything else. 

He also had a cheeky little go on my wheelchair as you do.

Since Harry left, I spent the afternoon having a chilled bath and making sure I am all buffed, shaved and clean ready for my stay. I then packed up all my stuff in to my favourite holdall, and had to fill a green bag with all my medication. Despite being 21 I am taking my bear, Lucy, who I have had for so so long and my lucky charms are also packed and ready. 

I am now starting to get super nervous! I'm trying not to think about it all but every time I do, I get a wave of butterflies. It is a really scary thought that in less than 24 hours I will have had life changing surgery. I keep looking down at my tummy and thinking, 'You'll never look like this again'. Even if by some miracle I have it reversed, I will still have scars on my tummy. Looking back I am angry at myself for ever caring how I looked in a bikini, and stressing about those extra few pounds before a holiday. Now, my worries will be whole lot more than that. I wish I could tell the old me, not to care so much and just enjoy doing what I wanted and wearing what I wanted, tummy fat and all!

I will be spending the next few hours watching TV and trying to distract myself as much as possible. No doubt I will be up half the night, unable to sleep, so I have a whole host of films recorded ready and waiting. I wanted to end the post with a massive thank you to everyone who has been wishing me luck and keeping me going. I will no doubt be updating you all as soon as possible. Fingers crossed everything goes to plan, and I will see you on the other side.

X marks the spot on my poor bloated, mottled tummy

Lots of love
xxx

Bend your knees.

Hi Guys!

So after the pretty hefty piece of news I thought I would update you with everything else that has been going on in the past few days.

I would like to start off by saying a huge thank you to everyone that has been in touch. Since the wonderful Lord Sugar retweeted my blog I have been blown away with the number of people who have read my blog and got in contact. I have now gone way over 10,000 views which is insane and something I never imagined!!
Last night I was starting to feel very low, I think it really hit me what was going to happen and I felt really down in the dumps. Then I was flooded with messages of support and well wishes from complete strangers. I can't tell you what a difference it has made, and I still can't get my head around it all. So thank you to everyone who is now reading or following my blog and to all who have messaged me and retweeted it. You have made me one very very happy girl! I am over whelmed with some of the kindness that has been shown.

My knee has decided to start behaving itself again! Which means I am no longer bed bound, I can now roll over in bed and put a bit of weight on the leg, which has made a huge difference to getting around the house. I have been using an anti inflammatory gel on the knee daily which has helped reduce the swelling, meaning the pain is a lot less intense. I am still pretty slow getting around but I can now get up steps and stairs on my own! I never thought I would be this excited about something so simple. I seriously took for granted being able to get myself around. I have also been able to get myself in the bath and with the help of Matt, the shower, and I can now get dressed on my own. All these small things make a huge difference to my mood and make me feel a bit more human rather than a broken body. My ankle is still sore from holding all of my weight but at least it hasn't decided to swell yet. The wheelchair has also been a god send, I was able to be whizzed around town by Mum so I could buy a few bits for hospital. It is amazing how people look at you differently when you are in a wheelchair. I see people visibly scanning me for what the problem is, there is no obvious cast and I am clearly not paralysed so it seems to be very confusing for the poor people round town. I felt strangely at one with my fellow elderly wheelchair users and babies in prams. It also made me realise how high up everything is; now I am short as it is, so struggle reaching the top shelves in most stores but being in a chair made such a difference. I couldn't see the cashiers behind the desk in some places and all my magazines were out of reach in one store. Cobbled pavements are also a nightmare!

Have spent much of the time still stranded due to the fun that can be had with crutches and a wheelchair by Matt and my brother, Daniel. Who knew they were that great!

Thats one of my brothers Daniel. We don't always get on but since I have really gone down hill he has really stepped up. He also has Crohn's Disease; although luckily at the moment his is in remission. Un like me he doesn't like to look things up or read up on the disease so all this is a bit of a shock to him. I think it highlights what the worst case scenario is for him, which must be really scary. But from about 10:30pm, Dan takes on the night shift. By this point my parents and Matt are usually sound asleep so he  takes on the role of making sure I have everything I need for the night; hot water bottles and drinks mainly but that is such a help when I can't carry anything around for myself. He doesn't read my blog but still, a big thank you to Dan.

I have also had some lovely visitors! Hannah, Matt's sister popped round for a lovely sit in the sun and two of my best friends Cho and Nash (Jess & Charlotte) came by this afternoon. Cho arrived with a wonderful card!

Its brilliant because I'm deadly allergic to peanuts.
They then went on to go through my wardrobe, working out which clothes they would like each if I die on the table, which made me laugh. Priorities first girlies! They never fail to make me happy.

Tomorrow I am seeing Harry on his lunch break which will be a great distraction on my starvation day. Seeing people and having visitors makes everything a lot easier, I am so grateful and lucky to have such lovely friends around me.

I started writting this list a few weeks ago, but with only a few days left until surgery I thought it was about time I published it!
I have been spending a lot of time thinking of what life will be like when I'm in tip top shape again.
I have compiled a list of all the things I want to do and things I have to look forward to once I am feeling better, and have Margaret at my side (literally).

GABI & MARGARET'S TO DO LIST

- Girls night out
To most this is a weekly occurrence, but I haven't been on a good, pain free, night out since the Summer of 2012! I can't wait to go out with my girls, dance and drink cocktails! I want to go away with my girls and stay over night somewhere and have an amazing night out.

- Go on holiday with Matt
By the end of the Summer I think we will both deserve a good break. I have my heart set on a trip to Paris & Disney (although Matt may need some convincing). I am also dying to lie on a beach or by the pool, in the sun. Finding a bikini that works may be a struggle but we will find a way!

- Spa day with Mum
I love a good pamper session and love spa days and treatments. When I'm feeling up to it, I want to have a long, lovely spa day with Mum. It'll be lovely just to lie there and relax.

- 'Make over'
After feeling pretty ugly, grotty and yuck for months I am in need of feeling pretty again. When this is all over I am going to get my hair and nails sorted. Due to how malnourished I am and the medication I am on my hair and skin are in need of some TLC. My hair has fallen out a lot, which is an instant confidence killer, although I am lucky that I had mega amounts in the first place and people assure me that it is not noticeable, but I of course hate it.
I can't wait for the puffyness to go from my face and the darks circles to fade from under my eyes.

- Join the gym again
I miss it a lot! Way more than I thought I would and I am looking forward to going back to my gym classes and really toning up again.

- Learn to ballroom dance
I have always wanted to do this, and every year after watching Strictly I promise myself it will happen. Matt is so not a fan so I just need to find myself a partner and I'm ready to go!

- Travel
I would love to be the kind of person who can travel the world with a rucksack holding the bare minimum, sleeping in hostels and being care free. However, I love my creature comforts and am a bit of a home bird - but I don't want this to stop me visiting and seeing some amazing places! There are two trips I really want to take, the first one is to drive across America, through as many states as possible, including Nebraska. For a long time now Nebraska has been my favourite state - I can't tell you why (I was a strange kid) but it would make me so happy to finally visit it and have my photo taken underneath a sign saying 'Welcome to Nebraska'.
The second place I would love to visit is Australia! One of my closest friends, Jess, is about to move out there so I think it would be the perfect time to visit Oz!

- Run the London Marathon
Many of you will be chuckling at the thought of this! ME! GABI! RUN!!
It was only in the few months before this flare that I really got back in to exercise and now that I can't do anything I am surprisingly really missing it. Once I am healthy again I plan to slowly get my fitness back and run the London Marathon for Crohn's & Colitis.

- Meet David Beckham
I'm not sure how this is going to happen. But when it does I plan for him to sign Margaret.

- Get a dog
I am dying to have my own little woof! I would love to have a long haired miniature dachshund. As a house hold we have three dogs already living here, so my parents are not best pleased with the idea. I have agreed to wait until I am all better to see whether I still want one and am ready for committing to owning the little thing for years to come! but I can't see that changing any time soon. She will be called Bella and I think about it an unhealthy amount!

- Move out
Most of my friends live away from home due to Uni and as much as I love my parents I am looking forward to having my own place with Matt. This probably won't be happening for a while, whilst I am still at Uni and saving the pennies but a girl can dream! I love interiors so spend a lot of time planning of my ideal home!

Dream home (the one from The Holiday)

- Be part of a Flash Mob
This looks SO fun & puts a smile on the face of everyone who watches them. There are websites where you can plan or join them - something I will definitely be doing!

- Graduate
This will be a huge deal for me. So far my degree has been hell - not because of the course, which I love, but because of how sick I have been. This year alone I have missed more days than I have been in; I spend my days constantly trying to catch up which is very stressful. For me to graduate with the rest of my year will be a huge achievement and will be even better if I get the final grade I want! Roll on that cap and gown!

- Complete my internships
Now when I started this blog I also wanted to document my life as a fashion student and intern. Unfortunately, due to being poorly I haven't been able to complete any internships recently. However! I have been lucky enough to have been able to reschedule some amazing placements for later on in the year. Fingers crossed I will be able to do these and be nice and healthy. I'm so excited to get stuck in to interning and working again.


I would like to end this post buy saying how much I am dying to bend my leg. It has been so long since it has been bent, it is like an itch that can't be sctratched. I see people using their knees properly and it makes me wince, so please bend your knees for me and enjoy it!

Lots of love
xxx

The Bombshell

Hey all,

Strap in guys, your in a for long one with some huge news...

So today was the day I met with my surgeon for the first time. I was a bit nervous before I set off as I really wasn't sure what to expect. I also have a constant worry that I am not actually that ill, I think when you live with being unwell for so long you kind of forget how bad things really are. I always worry people will turn round and be like, 'C'mon Gabi, pull yourself together you really aren't that bad'.

Mum came up with me, and we had to sit around before going in, we took the wheel chair otherwise it would have taken me hours just to get it to reception. Eventually we got called in, and my surgeon was lovely! He asked me to tell him the story of my disease from the start. That was 6 years ago! I struggled to remember all the ins and outs and different medications I have been on, and in the right order but we got there in the end. He then felt my tummy and had a quick peek at my bum, lucky guy & always a pleasant experience but modesty doesn't exist with a bowel disease!

He then sat down with Mum and me and explained that I definitely, without a doubt needed an ileostomy, he said my body was in crisis and I really needed this doing quickly. To be told your body is that bad and things really aren't good is a strange feeling. For so so long I have battled with keeping strong and putting on a brave face and when you are living your day to day life sick it just becomes the norm. I was quite taken back with hearing just how bad things were.
He said he wouldn't be removing my colon so that there would be a possibility of a reversal however he did explain that for every 10 patients only 1-2 will have it reversed. He explained that he wanted me in swiftly; at this point I asked him when this would happen. It was then he dropped the bombshell...

"Well I can book you in now as an Emergency, or if you would prefer I can book a planned one on Thursday"

Not what I expected. The waiting list is normally weeks but he has said that it can not wait and it needs to be done ASAP. That really made me realise just how bad things are.
I decided to go for the Thursday, that way I get to have a nice meal before and a final fart. It also gives me a few days to get my head around it and I love things to be planned rather than a rush and I really did not have my head around surgery that afternoon. As I explained to him, after 8 months what is two more days and he was happy for this to happen! Given the statistics I prefer to look at Margaret as permanent, I do not want to get my hopes up that it might be reversed. I am also unfortunate to have the disease in many places, including perianally, so it really is very unlikely that it will be reversed.

After seeing Mr Surgeon (as I shall call him) I then begun a bit of a whirlwind few hours of seeing different nurses. I was given two forms to fill in. To most this would be annoying but I secretly LOVE form filling (bit of a geek I know) so this kept me very happy for a while as the form was huge!

I had my pre op done, which involved a funny little nurse doing a blood test, swab, weight, height, blood pressure, heart rate and an ECG. I was weighed in a sit down chair and yet again my heart rate is about 100-110, which is way higher than normal. I have never had an ECG before but this involved lying down with my top off and 10 stickers stuck to different parts of my body with cables leading in to a machine. Who knows how it works but it basically tells them that my heart is healthy.

Once that fun was all over I met with my stoma nurse who went through all the logistics of having a bag. I was also given a pack with a pretend stoma! This was very exciting! It is basically a stick on red foam circle that mimics the stoma that'll be sticking out of my tummy, I then have a range of bags to stick on. The idea is I can wear it for a bit to get used to the idea of it all and practice putting the bags on and off. I think this is a brilliant idea and I love that its my own little pack (the geek in me again). Once he had answered all mine and Mums questions it was time to work out where my stoma will be placed. This involved looking at any creases in my tummy when I sit or stand, where the strongest muscles are, where my belly button is and importantly where my clothes sit. Luckily for me it has been able to be placed quite low as many of my clothes are high wasted plus I wear a lot of dresses and long tops and don't even own a pair of proper trousers or jeans. To me this a big plus as I should be able to find bikinis that will work, so I am thrilled with the placement of it. I am now sporting a big X where the bag will be so that Mr Surgeon can't miss it.

I then met with another nurse who went through yet another form and asked a load more questions ready for Thursday. She needed to give me an MRSA cleaning nasal spray but it is peanut oil based, so that is a big no. She then wanted me to have a body wash which makes sure you are completely clean but that can flare up eczema... yet again, another no. Finally she produced some pre-op drinks which are designed to have loads of carbs to keep me going before surgery, but of course they contained lactose, so none of them for me! Poor woman, I am officially a nightmare patient! It turns out I am not allowed to eat from Wednesday morning, so tomorrow I am eating all my favourite things before its 24 hours of 'clear fluids'.

Finally, hours after arriving I got to leave the hospital, with a huge mountain of information.

So there we have it guys, some big news. I will be meeting Margaret in two days time. A lot sooner than I ever thought, hopefully this will be the start of my road to healthy Gabi but it is scary! I don't think it has really sunk in fully but wearing the fake Margaret has made it all a bit real. It really is a lot to get my head around in quite a small space of time. I was expecting there to be weeks before my surgery and the emergency aspect has freaked me out a little. Maybe I am really sick after all!
My gorgeous Matt decided he wanted a go as well so stuck one of the bags to himself and is going to wear it over the next few days with me. Here we both are with our matching bags! He always knows how to put a smile on my face.

I will post again at some point with the updates about my knee and so on, but this post is already very long. As you can see from above in the past two days I have been able to put a little weight back on it.

Thank you all for reading, 

Lots of love 

xxx