Friday, 31 May 2013

New Wheels

Hi guys!

Well! Where do I start... I have had a palaver of a morning. Yesterday I gave the hospital where I am having my surgery done a call as I still haven't been given a time for my appointment on Monday. On speaking to my surgeons secretary she had no clue who I was or whether I was NHS or not. On top of that when I explained to her the situation she was very confused and asked who told me I had an appointment as I in fact do not. You did my dear. Of course on hearing that she was the person who has been giving me all this information for the past three weeks she started to back track and said someone would call me today to organise it all.
So this morning my lovely Dad gives them a call to try and get it sorted, at which point we find out that lovely secretary has gone on holiday and not only that but there is no record of me on their system at all. No notes, no letters, nothing. Safe to say I was livid. I have been waiting a month to see my surgeon and have slowly been getting worse and worse. This is when Mum and Dad kicked in to super parent mode and after hours of many phone calls between the two hospitals and talking to some actually very helpful people, I am now finally booked in to see my surgeon on Monday. Phew!
Due to all sorts of reasons I already have a huge distrust of the medical team, my consultant is the only exception, this has just confirmed my worries and doesn't make me feel very confident in what is going on. There are some amazing people working behind the scenes at the NHS, who bend over backwards to help you, however, some should not have their jobs. It is absolutely shocking! It's bad that I now don't believe anything is going to happen until I am sat in front of them, given these are the people who are supposed to be looking after me.

I also have some VERY EXCITING NEWS!
I have got myself a sexy new set of wheels. After being stuck in the house for days and in bed for most of that we have decided to hire a wheelchair to get me out and about. The crutches are okay for short distances but wheels is what I need. We have got hold of one from a charity which is brilliant, I can now be whizzed down the high street whenever I fancy. I'm not sure who is more excited, me or Matt!
The fix of anti inflammatory cream and painkillers has meant my knee is a lot more bearable, which is fantastic news. I am still unable to walk or drive but I at least today I got downstairs and on to my sun lounger and can now just about roll over in bed. Today I ventured out of the house for the first time in ages, and was pushed by Matt round PC World, he got to distracted he left me in the middle of isle. Luckily! I can push myself too but I think we are going to both need a bit of practice on this one.

My consultant also wants my joints to be seen by a Rheumatologist to see whats going on and make sure it's nothing un expected or sinister. I am sure they are lovely people but my last encounter with one of 'them' ended in him sticking a 2 inch needle into my knee and extracting 4 pots of fluid, with no pain relief. Now I am not one to swear but I sure did that time... he assured me not to worry as he's had grown men faint having it done but every time I see him wandering the hospital corridors I still want to apologise again. Safe to say I am not looking forward to meeting with them next week...

I was also visited yesterday by my lovely Cho, or to most Jess. She is soon off to Oz for a year and I am going to miss her terribly. We have been friends since we were 8, thats 13 or so years of love! I was stuck in bed, so she came and made herself comfy and we chatted for a couple of hours. It was so nice to have some contact with the outside world and really cheered me up.

Whilst I have been stuck in bed my poor family & Matt have had to wait on my every need. Food is served on a tray and drinks, medication & hot water bottles are always being provided! An excellence service I must say! Dad delivered this lovely tray a few days ago.

& Mum came home with some lovely, cheerful flowers for my room yesterday. They are one of my favourites and they really brightened up my day!

More news soon I'm sure!
Thank you all so much,
Lots of love

Wednesday, 29 May 2013


Hi guys,

I don't have the best of news, things are not looking great. The arthritis in my knee has become a lot worse over the past few days. I can now no longer put any weight on that leg what so ever, I have to manually move my leg with my arms/hands and no position is comfortable. It has swollen up and is now stuck in a semi straight position. I do have crutches but my whole body is so run down and I lack a lot of strength in my arms to be able to get around. This has meant that I am now pretty much bed bound, I can just about get myself to the toilet on my own but that is about it. I need help getting dressed and getting down stairs if I want to. As much as I would love to try and find something funny or light hearted about this; it is truly crap. I am very independent and hate having to rely on other people to help me at the best of times, let alone with basic things. The pain gets very intense and means I am barely getting any sleep, and I do not function well without sleep!
It is all a bit disconcerting as I don't even have a surgery date yet and this is all on top of the on going Crohn's symptoms! The arthritis will not respond to treatment as it is directly linked to my Crohn's, when my bowel is inflamed and unhappy my joints also flare up; as there is currently no treatment that works properly on my tummy, my joints are also stuffed. I don't know how I am going to get through the next few weeks/months if I am stuck in this state! It does feel a bit like it is one thing after another, and it is becoming increasingly hard to stay positive. On a good note though my pain medication has been bumped up to the highest dose of co-codamol. It makes me feel just a little whoozy and I am not complaining!
It has started to feel like all a bit too much and I can't help but feel that I am coming to the end of what I can cope with. I did have a minor break down earlier today, I had just got home from the Drs and it was raining. After lugging my body around on crutches to the hospital and to the Drs, my body was exhausted and I had wrenched up my body and arm. No matter what I tried I could not get myself out of the car. Mum had to run and get Matt and Dad to help carry me up the drive. A definite low point I can tell you! It felt like something out of a film! I stood there in the rain, sobbing my little heart out, unable to move with Mum carrying my leg and Dad & Matt trying to work out how best to carry me. It took them both so long to work it out, I started laughing at how utterly ridiculous the whole situation was. All a bit dramatic really!
My brothers face when in I came, carried like royalty with a gammy leg was a definite picture.

My hospital visit was also a bit eventful with Matt having to push me around in a wheelchair. Something he definitely enjoyed a little too much. I don't think I have ever feared for my life more than when he let go of the handles and let me roll backwards down a ramp. Thats love eh!

Despite everything I did have a day out on Bank Holiday Monday. Me and Matt went to Wembley to watch the play off final between Crystal Palace & Watford. Looking back, it was not the best move and I have definitely paid for it.

We managed to park a good 1,000 miles from the venue and old hop along here had to drag the gammy leg for what felt like hours to the stadium. Once we finally got there, I was let in through a disabled bit and ushered through a back door and up a lift. The lovely security guard glanced down at my crutches and said, "disabled?". Charming! The guy clearly has a way with words. Having to explain that I have acute arthritis despite not being 80 was interesting.
By the time we got to our seats the game was pretty much ready to start, it was only when we sat down that we realised we were at the Watford end... never a good thing for my die hard Palace supporter. We were very lucky to be in the VIP area which meant that all fans were mixed up but we were surrounded  by yellow Watford fans. The game was actually so good! I am not the biggest football fan but the atmosphere was amazing and I got scarily in to the game. I think it bought out my inner yob! I even had a cheeky high five/hand shake/hug with a fellow fan when we won!

disabled girls day out!

my lovely Palace fan in his train driver hat

I also have some very exciting news, I am now the proud owner of a sun lounger! Instead of having to lie in bed or at best on the sofa, I can now lie comfortably in the garden on the rare chance we get some sun! I don't think I should be as excited as I am about this.

Thank you all again for reading and for everyones lovely comments over the past few days. I really appreciate it!

Lots of love

Sunday, 26 May 2013

Good Days & Bad Days

Hey guys!

Im going to start off with my moan. Swiftly get it out the way.
Recently I have had quite a few bad days. I seem to be spending more and more time in pain and feeling exhausted. You can always tell when I've been feeling rubbish when I don't bake, and it's been a while since I've got my Mary Berry on! It feels so strange to be counting down the time until a surgery that I don't want to have. It feels like a huge lose/lose situation. I only recently found out that I will be meeting my surgeon on June 3rd. On the one hand it means it really gets things moving, its the first step to meeting Margaret. On the other, it makes everything very real, and that is very, very scary.
People are telling me how brave I am and how positively I am dealing with everything. I am glad I can show people that something like this doesn't have to be the end of the world. However, I do have my bad days too. Recently my arthritis has come back with vengeance. My knee has swelled up and has stiffened so it no longer bends, my ankle is very painful so I'm finding walking very difficult. The crutches have come out of the loft again, but even they are hard to use with my thumb playing up too. All of this also means I can't drive; for me this is one of the toughest parts, I am very independent and I hate having to rely on everyone around me to do things. Being even more poorly has also meant I have missed some of best friends birthdays, which feels awful. It makes sitting at home, unable to move even harder, knowing your friends are out having a good time. Luckily the Dr has prescribed me some stronger pain killers to help me get through the pain, especially at night.
I do have some of the most amazing friends. One thing being poorly sick does is make your true friends really stand out. Everyone has busy, hectic lives and I would never expect anyone to put their life on hold for me but it makes me feel incredibly loved when people take time out to be there. This week my long time friend Harry and the lovely Zoe met up with me in a pub; I know right now I am not fun or exciting and there are probably a million other things they would rather be doing; so it means the world to have them take time out to see me. It has massively lifted my mood, probably more than they realise.
So a huge thank you to them.

Given I have been pretty fed up and have months of not much fun ahead, Matt treated me to an amazing meal at The Vineyard (a 5 Star restaurant, hotel and spa). I haven't dressed up and gotten out of my PJs and slob clothes in so long, it felt so nice to dress up and go out. I even slapped on some make up, it took a good trowel load to even vaguely cover up the dark circles under my eyes but at least I looked a bit more human. We were greeted with champagne on arrival and went on to have an incredible four course meal. I really wanted to take photos but we had to 'be cool'. They have over 3,000 wines to choose from and match them to each course. Not great for a wine hater like me, but Matt loved it! Our friend Louie works there so at the end of the meal we got a tour of the kitchen, including the special chocolate room! We finished the day with some gorgeous little entree desert things whilst relaxing on the most comfortable sofa I have ever sat on. Talk about perfect!

I may have had to sleep the rest of the day away, and my tummy definitely suffered from all the food I ate but it was so worth it! It was also so great to do something nice with Matt, he works so hard having just set up his own business ( and puts up with me being poorly and probably looking gross most of the time so it was lovely to actually do something coupley!

I have also have some very exciting news! About two weeks ago I was asked to guest blog for the NACC Blog, 'Me and IBD' Here is the link for my my post...

It is so great to be writting for other sites and spreading awareness for the disease. IBD and Me aim to help young people with bowel disease and even if my post puts a smile on one persons face or helps them in some way, then I'll be a happy bunny!

I have also been trying to get this blog out there. The more people that see and read it, the more people that will have a greater understanding of Crohn's - which can't be a bad thing! Some amazing and lovely celebrities have retweeted it, which has made me so happy! So thank you Lorraine Candy - Editor in Chief of UK Elle Magazine, Hilary Alexander - Journalist and Fashion Director of The Daily Telegraph and Beccy Huxtable off of the Scott Mills Show and Radio 1. You have all put the biggest smile on my face. From their retweets I have also been contacted by some lovely people from around the world, so thank you to everyone.

I have also just found out that I have finished my second year of Uni with a 2:1, after the year from hell and missing half of it I am actually quite proud of myself. I would have loved a 1st but I think considering everything I have done quite well!

I'll carry on updating you all with goings on, sorry for having a moan. I hope you are all having a wonderful Bank Holiday!

Lots of love

Thursday, 23 May 2013

Iron Woman

Hey guys!

A few days ago I went in to hospital to have an iron infusion. According to recent bloods I am anaemic & due to having Crohn's I can't absorb or tolerate iron tablets. With surgery coming up soon the Drs want me in tip top shape and so lucky me got to spend the day attached to a drip.

I arrived to the 'Infusion Unit' at 10am and made myself comfortable in a large squishy arm chair.

The infusion room is basically a large square room with arm chairs round the sides, each one with their own side chair, table and drip stand. In the centre are all the trays of medical stuff like needles, saline solutions and packs. The nurses work in the same room all day, which seems really strange compared to normal wards. I got to watch them draw up and mix the medication for each patient. I shared the room with three other patients all of us having different 'infusions'. 
There was only one nurse on duty that could fit cannulas (the little tube that goes into your vein via a needle) so that meant quite a long wait before I was up and running. After about an hour and half/ two hours it was my turn to have the needle put in my hand. Always a favourite activity of mine! It actually didn't hurt too bad and they got it in first time, which is always a surprise. Huge thumbs up to that nurse! The nurse then bought over my medication which turned out to be the weirdest dark brown colour. Lovely! Once I was all hooked up I got to watch it all run in to vein through a clear tube.

I shouldn't have found this so fascinating but I really did. They ran the iron in to my veins for 15 minutes to make sure I didn't have an allergic reaction. After about 5 minutes I started to feel incredibly hot and my face felt like it was swollen and on fire. I decided at the time not to make a fuss and just sat there until it went away. Looking back, that was not the wisest of decisions and I really should have said something. If anyone is ever in that person, definitely say something! Luckily for me, it did go away and I had no other reaction! Given I was doing okay, they then started the four hours of fun!

I was asked if I wanted lunch. Normally this would be an incredibly daft question but this is hospital food... They were going through options when I pointed out I couldn't have lactose and that I was allergic to peanuts. Their faces dropped as they double checked my notes. After years of treatment my notes said I had 'no known allergies'. They were very apologetic and it did mean I could request exactly what I wanted to eat.

My glamorous lunch 

I took my iPad with me and had my phone so thought I would be pretty set up for the day, until I discovered I had one bar of signal and no 3G... I ended up trying to get a magazine to stretch over the four hours. Not so fun I can tell you! It was also only in the last hour that Einstein over here worked out how to recline the chair. I wish I had figured it out right at the start so I could have tried to fit in a cheeky snooze.

I ended up being the last person there, and was so glad to get up and stretch my legs when it was all over. It's amazing how exhausting doing nothing can be, and I spent the days after not doing much and lying in bed. Hopefully the iron will make me less exhausted and run down, and I might be able to go more than a few hours without needing a nap or a lie down.

Heres hoping anyway!

Lots of love!

Tuesday, 21 May 2013

Nice Things

So despite a lot of nastiness going on in my life right now, I have had actually had some lovely things happen in the past few weeks.

Firstly I would like to say an absolutely huge thank you to everyone who has taken the time to read my blog and get in contact. I have been completely over whelmed by people getting in touch and sending the loveliest messages of love and support. I hate the thought of making a fuss, and so until now don't really burden people with the disease or whats going on. But the reaction I have had from everyone has really melted my heart. Some even bought a tear to my eye, and for those that know me know I am not one to cry. So thank you all so much. You don't know how much it means to me that people are reading & enjoying my blog. Huge amounts of love for you all.

I also received the most stunning bunch of flowers in the post. They are still looking beautiful and every time I see them I smile.

Given the card didn't say who they were from, I immediately asked Matt if they were from him, which he denied. I then had visions of having a stalker, and panicked at who would know my address. Turns out they were from my lovely Matt... or so he says. Me and Dad are still convinced he is just taking credit for someone else's lovely gift. 
Matt also gave me a lucky charm; he found what looks like a horse shoe at work, and so cleaned it up and painted it for me. Hopefully it will bring me a lot of luck over the next few weeks!

The 'horse' shoe is so small though, I can't imagine a horse small enough to have worn it. So maybe it belonged to another hoofed animal, like a llama or a Shetland Pony, or maybe it isn't a horse shoe at all. Either way I love it and it will accompany me during my hospital stay!

My bestest friend and very talented illustrator, Becky, also sent me the loveliest card in the post. It put the biggest smile on my face and absolutely made my day.

Last week I went in to Uni for a lecture, for the first time in weeks. It absolutely exhausted me but was so worth it to feel like a normal human being. I could kid myself for the afternoon that I was just as 'normal' as everyone else in the room, it did make me a little sad to see everyone healthy and pretty care free. I can't wait to get my life back!
It also meant that I got to catch up with some Uni friends, Milly & Laura, which was great. Having the change in scenery and being treated like 'normal' Gabi again, barely mentioning Crohn's, really lifted my mood.

After a few days of feeling very poorly and exhausted as well as going through a colonoscopy, I woke up on Sunday, inspired to bake. I decided to make a firm favourite, which don't take too long. Chocolate Chip Cookies. Here's a photo of all 24! Less than 24 hours later they were all gone...

I also ventured out of the house and went to the pub with Matt and his gorgeous dog, Jake. It was a beautiful day and although we weren't out for very long, I got to soak up some sun. Even if I will be spending much of my Summer in hospital and recovering, at least I will be a bronzed goddess!

Sunglasses are a current firm favourite accessory, they hide a million sins. On that day, I in fact looked like a corpse but you'd never know thanks to my bug eyes.

Finally! I am very excited that all my friends are soon returning to the mothership. I miss them all so much, and can't wait to catch up with everyone again. They all start to finish their final year at Uni next week, which is a very scary thought, so there will be a lot of celebrating to be done! I plan to sleep a lot before they all come back, so I can join in as much as possible!

Thank you all for reading,

Lots of love! xxx

Thursday, 16 May 2013

The Dreaded Colonoscopy

The final test I had to have done was a colonoscopy. My nemesis. I have had one of these before as well as a smaller version called a flexi-sigmoidoscopy. For those that don't know it involves having a thin tube with a camera and light on the end stuck up your bum and through your large and maybe your small bowel to get a real good look. They often like to take pictures and biopsies whilst they are having a nose around. Most of these types of tests, aren't pleasant but aren't awful. However, my last one was truly horrific, I was in a huge amount of unexpected pain and was left quite traumatised by it all really. The feeling of lying on a bed completely out of control was truly awful and I was not prepared to put myself through that again. Luckily my consultant understood that I really was putting my foot down here and agreed to allow me to have it done under Propofol, which is a light general anaesthetic meaning I should be asleep. Propofol is also what killed Michael Jackson - which is always great to know before you are put under!

The first stage is the dreaded drink. So that they can get a proper look of your bowel, it has to be completely clear. This involves drinking two litres of laxative fluid and not being allowed to eat for 24 hours. So at 7:30am I had my final meal of toast with apricot jam... exciting I know. Immediately I was starving and continued to only think about food for the next few hours. Those that know me know that I already love my food, but the moment someone says you can't eat anything, suddenly all you want to do is eat. Luckily I did have a trip out the house with Dad taking me to hospital to have my pre-op assessment. Here they swab your throat and nose, height and weigh you and ask you a million questions about your health and lifestyle. It was at this appointment that I found out some VERY EXCITING NEWS. I am 5ft3!! I have always thought I was 5ft2, and at my small size, every inch counts. Although, I much prefer 5ft2 than 5ft3 as I am not a fan of the number 3... but silver lining is now I can technically weigh more to be have a healthy BMI and thus eat more!

I returned home to my first jug of goodness. I read one man describe the taste as a mixture of goats spit and urinal cleaner, how he knows what either taste like I don't know, but I have to say I agree with him in that it tastes pretty vile. I chilled the liquid in the fridge for a few hours before downing the litre, glass by glass over the course of the hour. It is very slimy and thick with a hint of lemon but with a very salty after taste. I found it coated my teeth and tongue and so took to glugging down Lucozade to get rid of the taste. Below is a picture of my first jug, innocent looking I know but looks can be deceiving.

After finishing the litre I have to say food was the last thing on my mind as I settled down in front of the TV waiting for the stuff to do its magic. Previously its only taken about an hour before the gurgling started but three hours later there was still nothing. At this point I did have a bit of a panic, wondering when on earth this was going to take effect, but let me tell you I did not need to worry. An 'explosive' 40 minutes later I emerged from the bathroom feeling about two stone lighter and ten years older. Unfortunately I was also due my second litre of the stuff. This lot was much harder to get down and by this point I was drained, exhausted and a bit teary. At the end of it all I treated myself and my poor tummy to a warm bath and a glass of apple juice. 

Me after my final drink.

I woke up bright and early the following day for the lovely colonoscopy. I had to be at the hospital at 7:30am, which is frankly ridiculous but there I was in my sexy gown ready to go. See below for evidence of the gorgeous look.

Please do excuse the Mount Vesuvius that had decided to erupt on my nose on that particular day. I am hardly looking my best!
Next came the most exciting part of the day, my anti-blood-clotting-socks! They were insanely hard to get on, and they had a little gap for your toes at the end, which made me laugh. They were also incredibly tight, subsequently pushing all my leg fat to my knees, as if they needed any more. My day was made even better when the nurse explained I could take them home! Lucky girl!

I met my anaesthetist, nurse and surgeon before being taken down to the theatre. I expected a dramatic send off, with me being wheeled away in a hospital bed or at least a wheel chair. But no, I walked there myself, gown flapping by my ankles (one size fits all is not great when you are a midget). I did have a bit of a cry as I suddenly turned in to a 3 year old and became terrified of the pain I might be in. Flashbacks of the previous test sprung to mind, and I was very worried I wouldn't be asleep enough or would wake up half way through. 
I got to the anaesthetists room where the loveliest anaesthetic nurse took care of me. She apologised for having to undo my gown but when you have something like Crohn's your modesty is pretty much out the window from day one. It took a few attempts to get the needle in my arm, at this point I had to be reminded to breathe and try not to hyperventilate. The last thing I remember is having my oxygen mask adjusted, bum to the world and staring up the nose of one my anaesthetists.

The next thing I remember is waking up to the beaming smile of a male nurse, who I went on to tell all about my dream. I was at a country and western concert, if you must know. Thankfully I do not remember a single thing about the 20 minute procedure. The next few hours are also pretty patchy. I was high as a kite. I remember chatting away to my mum and the surgeon being astonished by how awake I was. I apparently spent a lot of time starring at the needle in my hand and repeated myself a lot. I felt drunk. The surgeon explained that I woke up a few times during the procedure and chatted to him, but I have no memory of this so god knows what I said. He told me he has written it all down and it would be on the net for all to see. Brilliant! I like to think what happens in the operating theatre, stays in the operating theatre. He also described his findings, a thickened and scarred area where my small and large bowel meet, a very inflamed and ulcerated area and a 'horrific bottom'. I do hope he meant my insides and not its appearance.
The stomach cramps soon started as all the air from the procedure worked its way past the poorly bits, and then things became less funny. I spent hours in a lot of pain and slept for a very long while after. Surprisingly I wasn't hungry at all. Although, of course, that did not last long!

Me high as a kite after the procedure. I don't remember this being taken, but Mum says I kept demanding she take photos of me. Apparently I turn in to a right diva when drugged up.

My fascinating hand. They put those wrist bands on both arms. Just in case you lose an arm or something.

The heart rate monitor tab I found over 24hours later. Whoops!

Apologies for the monster post! Thank you all so much for reading!

Lots of love! xxxx

Monday, 13 May 2013

The most photographed bowel in history.

Hi Guys,

So over the past few weeks I have been having some lovely tests done to get a real good look at my insides before surgery.
As well as your basic bloods I have also had to have an X-Ray, two MRI's and a Colonoscopy.
The X-Ray was to take like a screenshot of my stomach and bowel in one go. Despite the half hour wait, this only took two minutes to do.
I then had to have an MRI of my pelvis. This involved lying in a tunnel with a fairly heavy grid type thing placed over my pelvis. I had to have a pad in between my bum cheeks so as to get a good enough picture and then all I had to do was lie very still whilst it played out a mix of beats and sounds which remind me a lot of drum n base music - in other words, horrific. I was also asked to try and clench my bum cheeks together for the duration of my MRI. Now let me tell you, that 40 minutes of buttock clenching is actually near on impossible. I gave up after about 30 seconds, I would be very impressed if anyone could manage this!
I had some head phones to listen to Radio1, Chris Stark and Scott Mills once again got me through. Having a giggle to Innuendo Bingo is probably not the best way to keep still, but at least I was enjoying myself. Every now and again a little voice sounded through my headphones to let me know how long was left. I have had quite a few of these now, so they don't really phase me. I weirdly now find them quite relaxing.
The second MRI wasn't so pleasant. This one was to track my bowel and it involved drinking a jug of lovely looking 'squash like' fluid and being injected with a contrast to get a better picture.
I was given half an hour to down this jug, one small plastic cup at a time. The MRI man explained that it was a mild laxative that they would then track moving through my intestines. To put it mildly, it is not the nicest tasting drink. Towards the end I truly thought I was going to be sick but got through it in time. Never one to turn down a challenge me. I got strapped in to the MRI bed and a nurse came at me with a cannula needle, ready to inject the contrast dye. At this point I was also told I would be given a muscle relaxent. Muscle relaxant and laxatives - two things nobody should have to hear in the same sentence. I was lying in the tunnel filled with images of unspeakable horrors for about half an hour. Thankfully none of these came true and for being such a brave girl Mum treated me to a McDonald's on the way home.

My consultant has recently requested yet another CT scan to try and identify a possible abscess which would explain my very high temperatures. After that I can't imagine there will be any part of my digestive tract which hasn't been seen! I must have the most photographed bowel in history.

Lots of love xxx

Saturday, 11 May 2013

Welcome Margaret!

Hi Guys,
So today I have some big news to tell you all.
After months of battling to get the old Crohn's under control, we have really run out medical options, this means that nothing is really keeping the disease stable and under control. The only option that is left to go down is surgery.
So, pretty soon I will be welcoming Margaret in to my life. Margaret will be an ileostomy bag. Now, I have so far only told three friends and my boyfriend that Margie would be joining us as it was only going to be a temporary thing. However, it is now looking like she is going to stick around for a while longer so I've decided it's time to welcome her to the public. If I am not okay with Margie and having Crohn's then how can I expect others to be. On hearing that I would need this surgery my wonderful boyfriend's first reaction was what we could name it. He came up with Margaret, 'Margie' for short. Unfortunately this also happens to be the name of my consultant... but there is no link and we definitely won't be telling her. Bit awkward. My family continue to be amazing but Matt really has been incredible about this news, he hasn't batted an eyelid at the thought of it all and continues to be my rock through everything. He has turned something which could turn my life upside down in to something funny and light hearted. I can't thank him enough for this.
Margaret will be joining me at some point this Summer, to give my poor bowel a break. It is a pretty huge life style change but on hearing the news I kind of laughed, and I think humour is really the only way forward. As much as it is far from ideal, Margie will give me my life back! I will be healthy for longer than a few months for the first time since I was 15, which is huge! I will be able to hold down a job, complete all my dream internships and finish my degree without interruption, and one day be able to have kids without having to stress about the next flare up. I will be able to pretty much do everything I want to do, and will get to lead a completely normal life. Something I haven't really been able to do till now. Weighing things up, it is a good thing.
Now, an ileostomy is very similar to a colostomy, which most people have heard of, it is just a bit higher up in the digestive track. But, the fundamentals are the same. I will have a stoma created and have a bag (about the size of your hand) fitted to the outside of my body.
I still have a lot to get my head around the main thing being NEVER POOING OR FARTING AGAIN! (Something Matt is definitely not complaining about). I am only at the start of a long road to healthy Gabi but I hope to document my journey with Margaret on this blog and raise awareness for people living with ostomy bags (it is way more common than you might think). I am having lots of lovely tests done at the moment to get ready for this surgery and will write about these soon. If anyone reading this has any questions please ask. I won't be offended or grossed out, please ask away :)

Lots of love xxx

Wednesday, 8 May 2013

So what have you been up to?

In recent months I have spent a lot of my days at home. The symptoms of the Crohn's as well as the exhaustion that comes with it during a flare means that even if I wanted to escape my house, I would only make it half way down the road before collapsing in a heap.

Luckily some days are much better than others and I have developed a lovely little list of activities that I do on my 'good days'.

1. Baking.
Now I don't mean to brag, but I am the next Mary Berry. I love to bake! On a good day I'll make a big batch of cookies, tray bake or cupcakes, and on a VERY good day I'll pick something new from my Baking Bible. Surprisingly, I don't have much of a sweet tooth, so rather than eating it all myself, I instead feed my family. It won't be long before my boyfriend, Matt, needs rolling out the house as he seems to be the main cake scoffer! My proudest baking moment, so far, was making my own loaf of bread. Now, before I started I definitely did not realise how much hard work would have to go in to this little loaf. Word of warning, it is not something you should undertake if you are supposed to be 'taking it easy' or haven't done any exercise in a while, as I in fact pulled every muscle in my arm kneading the bugger. Thankfully, the hard work did pay off and the sticky mess, rose in to a beautiful brown loaf.

2. Walking
I have two of the loveliest doggies, and on good days I head out with my mum or Matt for a lovely walk. One thing I have really missed is exercising, but getting out in the fresh air and having a gentle wander makes all the difference. It helps me clear my head and feel a bit more like a human being, even if I do need a cheeky nap afterwards. 
Here is my favourite woof, Flynny Dog

3. Internet Shopping
The most dangerous kind of shopping of them all. There is something about not actually having to hand over cash or enter my pin that somehow makes spending a whole let easier and definitely guilt free. Now I admit I love to shop at the best of times, but since I have been un well this has been taken to the next level. I tell myself I need cheering up and so it is completely okay to buy more clothes, as it is only a little treat. However, these 'little treats' have built up in to pretty much a whole new wardrobe! I also tell myself that I need a whole new set of clothes every time I intern, and as I have quite a few lined up for my healthier future, I definitely need to keep on shopping...!

4. TV 
I try not to spend endless hours sat in front of the TV but it can't be helped when there are some amazing programs, box sets and films to be seen! I won't bore you with all the details but current favourites include Grey's Anatomy & One Tree Hill, as well as all the MTV classics, The Hills, Teen Mom etc, I Used to be Fat. ooo and the introduction of SKY DISNEY has officially made my year!
OH! And I have the biggest addiction to any hospital related program, One Born Every Minute, 24 Hours in A&E, The NHS in a Day... the list goes on. 
Maybe I do watch a lot more TV than I first thought...

5. Baths
I am admittedly a bit of control freak and a chronic worrier. I wish I was a care free, go with the flow, come what may, whatever happens happens, it'll all turn out for the best, whats meant to be is meant to be kind of person. But in fact even those sayings make me feel a bit nauseous. One thing that I have found that eases my worry and stress is having a bath. The simple act of lying in a hot tub of essential oil goodness has become a permanent fixture in my day. It's an added plus that it also eases a lot of the aches and pains of Crohn's.

Apologies for my rambling today, I have a colonoscopy on Thursday and so today is STARVATION DAY. I am finding anything and everything to distract me. Will post more on this later...

Lots of love x

Thursday, 2 May 2013

So what exactly is it?...

I get asked this ALOT.
Most people seem to have heard of this fun disease and a surprising number of people have 'a friend of my mums second cousins neighbour' who has Crohn's. But not many people actually know what it is.
I tell many to look it up online, but having done that myself, many times. It tends to bring up some scary and frankly disgusting photos and a whole load of medical mumbo-jumbo.
So here is my brief facts list on Crohn's disease.

- its a bowel disease
- you can get it from your mouth to your bum, but most of us have it in their large or small bowel (mine is in both as well as all the way down)
- its like large mouth ulcers and swelling in your intestines, that wear away the lining
- there is no cure
- most people spend their life on medication trying to prevent a flare up, and treat one when they happen
- my life expectancy is pretty much still the same as a normal persons
- there are a whole load of symptoms, but main ones that you can get include - weight loss, extreme diarrhoea, extreme tiredness, abdominal pain and blood loss. I am lucky enough to suffer from all of these.
- many of the medications you can be put on have equally horrible side effects - weight gain, swelling of face, hair loss, muscle and joint aches, heart palpitations, night sweats, shaking, nausea and an increase in chances of a whole host of even worst illnesses and diseases. - I am doubley lucky in that I have spent a lot of time on these meds and have suffered from all of these things.

Cor, when you put it like that it sounds bloody horrific but really there are silver linings to every cloud. My favourite one being that unless I am on steroids it's pretty much impossible to be fat. It is a way of staying skinny with no effort at all, no diet and no slogging it out at the gym.
& it isn't all bad, over the past five years I have spent months at a time completely symptom free! Modern medication is a wonderful thing, & kept me in tip top shape for a long while. Some people can spend years in remission!

I have also recently suffered from an added complication (I know... it just keeps getting better). That being, arthritis. My right ankle, left knee, right thumb and jaw stiffen and swell up and cause me a great deal of pain. HOWEVER! When the Crohn's gets better so does the arthritis, so it's not so bad really.

I have added a picture of my lovely swollen, club foot. Mainly because it makes me laugh. I already have the stumpiest feet in the world (much to the amusement of my boyfriend and friends) and the swelling really didn't do much to help the situation...

And here is my knee, please excuse the hairy legs - it was not high up on list of priorities that day... (excuses, excuses). Both these photos were taken a couple of months ago when the joints were at their worst.

Below is also a picture of my intestines. I asked for a print out of the picture in a haze of sedation, 'to show my friends' and I'm so glad I did. Now this is a heathy part and most will never get to see their insides but thats probably what yours looks like too... cool huh?!

Now that you all have a bit more of an understanding of what Crohn's is all about, enough with the doom and gloom...
Lots of love x

Oh Hey!

Hi Everyone, 
Despite my love of reading other peoples blogs, I have never written one myself so apologies if this turns in to big, rambling heap of rubbish. 
I have decided to start this blog for a few reasons, 
  1. I am incredibly bored. I have been spending a lot of my time recently stuck at home, with no energy or will power to do much at all. I thought this blog might be a good way to keep me busy rather than constantly bugging my parents and poor boyfriend for entertainment and attention. 
  2. Now bowels are not something many people like to talk about it, despite the fact that we all poo and fart, it is still a No-No subject for most (my best friend Becky is the only exception). Due to this, Crohn’s is also not something people know about, us lucky lot who are blessed with a bowel disease (IBD), are never quite sure whether on the mention of symptoms, side effects and complications, people won’t run in the opposite direction to be sick. I hope that by being open about Crohn’s, it might one day become okay to talk about... even if it is just amongst my nearest and dearest. 
  3. This disease changes all the time, every week I seem to have a new medication or plan of action and I lose track of who I have updated. By logging all the updates, my friends and family can hopefully get a better understanding without me having to repeat everything ten times over. 
  4. I am also incredibly lucky to have some amazing opportunities. Over the past few years I have interned as much as I can and want to keep everyone updated on the mad life of a fashion intern. As well as spreading the joy and love of things I wear, buy, eat and bake...
  5. And finally, I hope to show everyone that you can live with a life long disease and still do what you want in life. My dream is to join one of the most image conscious, cut throat industries; fashion. Now, bowel disease and fashion are not a marriage made in heaven, but I will show that it can be done and that a chronic disease does not have to define you, or take over your life. 
I hope I don’t bore you half to death or make you feel sorry for me, that is the last thing I want (I don’t do well with sympathy), and even if you only visit the blog once, I hope it’ll be a bit of an eye opener... 
Thanks so much for reading, 
Lots of love x