Big Convo & a Big Gamble

Hi Guys,

I planned to post about this weeks ago but time ran away with me, as it always does so...
Three or four weeks ago I had my standard appointment with my Dr. Consultant at the hospital. The amount of time between these appointments varies depending on how healthy I am and whats going on. This time it had been 6 whole months since my last one, which is always a good sign.

I arrived early as ever and got weighed (never a pleasant experience) before taking my seat outside the waiting room. The appointment went much the same as it always does, with questions from how I was feeling and how my symptoms have been to what I was generally up to. I let her know that the teaching idea had been put on the shelf until further notice and instead I was pursuing Chroma (more to follow on that later).
As the appointment was wrapping up Dr. Consultant asked me, "So are you happy to leave things the way they are?". To which in classic Gabi form I replied, "Yeah I guess so", despite my head thinking the opposite. Luckily Dr. Consultant knows my quite well by now and saw straight through this, probing me to really say what I thought. I explained that although I was getting on fine and enjoying being the healthiest I had been in a long time, ideally I would love to have Margaret reversed...

I was half expecting a disappointing reply, thinking that the likelihood of this happening wasn't all that high but was pleasantly surprised when Dr. Consultant agreed to carry out some tests to see if it would be a viable option. I don't think anyone has ever looked so pleased at the news that a colonoscopy was on the cards! I skipped out of that office with the biggest smile on my face, blood & colonoscopy form in hand, ready to book. Thankfully due to past colonoscopy experiences I am able to be knocked out for it, so although I'm not thrilled may anxiety levels shouldn't be too high. The even better news is that, due to Margaret, I don't need to take any of that horrible bowel prep before the ordeal!
I am now sitting tight, waiting to hear from the hospital with an appointment.

I am trying really hard not to get my hopes up, I was firmly explained before I even had Margaret that I only had a 1-2 in 10 chance of having her reversed. Although it is really hard not to hope and think for the best I know I have to be realistic about the situation. There is also the added factor that if I were to go for the reversal surgery it would mean another hospital and recovery and see me out of action again for six weeks. When you are already very poorly a hospital stay and recovery process doesn't seem to matter as much, but when you are healthy and enjoying life, it is suddenly a big deal. Choosing the timing of my surgery (if I am to have it) will be key and have to work around life and work. Luckily I am largely working for myself, being officially self employed and running Chroma.

Which leads me swiftly on to some very very exciting news. I have officially launched a KICKSTARTER campaign for Chroma! 

As you guys know I have spent the past few months working really hard to get Chroma off the ground but to take it to the next level I need to raise some money. In order to do this I have set up a Kickstarter project, aiming to raise £4,000. Kickstarter is a crowd funding site; it works by members of the public pledging an amount of money in return for rewards, such as a set of your own Chroma notebooks, our Chroma poster or a digital portrait of yourself in the style of our amazing animated film. 

However, Kickstarter is all or nothing; if I do not raise the full £4,000 then Chroma will not receive a penny. This is why I need as much help as possible. If you are able to pledge some money to my project, no matter how big or small, I would be incredibly grateful. If not however it would be equally as great if you could help me spread the word. The more people that hear about Chroma the more likely my campaign will be a success!  

Head over to my Kickstarter page HERE for more information on how Kickstarter works, my project and how you can help. My brother, Sean, has also made a pretty amazing animated film which if all else fails is definitely worth a watch!

I will leave you with that plea and will of course keep you updated with how the possible reversal goes!

Lots of love
xxx

Shameless Promo

Hey everyone,

How have you all been?
My life had been pretty manic since I got back from my holiday. As some of you will know, the University project I mentioned a couple of months ago, way back in March time, has kind of taken over my life. If you can remember that far back as part of my final year project I set up my own stationery brand, then called Chroma Notebooks. I loved setting it up and thankfully it was pretty well received! This has meant that I have made the decision to continue with the developing the brand. I am officially self employed and running Chroma (Stationery)! We are suppling personalised stationery in 20 different colours, we are able to digitally emboss any name/initial/logo or message on to the customers notebook.

It is both exciting and terrifying in good measure but the perks of working for myself, from home, doing something I truly love outweighs my fear. Things were moving at an annoyingly slow pace in the weeks leading up to my holiday then all of a sudden that pace picked up.
My phone and laptop came with me to Spain and I spent a couple of afternoons working through things that couldn't wait until I got back. Since I returned I have been kept very busy with exciting developments, photo-shoots and meetings. It is something I am very passionate about and want to work so much and if it doesn't then I will have learnt a whole lot! If you could check Chroma out at www.chromastationery.co.uk then that would be amazing! I also have a Facebook and Twitter on the go with I would appreciate a follow on.

Apart from that I have spent a week house sitting, part time job hunting and getting back in to the swing of being home from my holidays! It is a month today until my birthday, the big 2 3. Although I yet to have any plans, I'm sure I'll figure something out. I also have kind of big Margaret based news developing, something I will write about in the coming days, so check back again soon for that update. 

Lots of love

xxx

Mine and Margaret's first holiday

Hello,

Apologies that it has been a while since my last post but Margaret and I have been relaxing pool side on a two week holiday to Spain. Although I have been away with Margaret over night to friends houses or weekends away, we have yet to venture out the country, for longer than 3 nights or on a plane. I'll be honest, I didn't really give it much thought. I like to think Margaret and I know each other pretty well by now and we muddle along just fine - it is rare that she plays up or does anything unexpected, so I thought we'd be fine, and largely we were.

I packed enough supplies for one bag a day which is three of four times what I would usually need - I normally change everything two or three times a week. I then pre cut every bag - this is where you cut the right size hole in the adhesive 'flange' (ERGH) so that your stoma ('Margaret') can fit through and sit snuggly. I normally do two at a time and then get bored so having to cut 14 was very boring. I then packaged up 14 pieces of everything else I needed and made up 4 little packages of supplies. Each one went in to a different suitcase or my hand luggage. I couldn't stand the thought of losing my case and having all of Margaret's stuff going with it. That would leave me in a right pickle and would be a faff to get new supplies in a foreign country.

The mass or Margaret stuff EVERYWHERE

Throughout the two week holiday there were a couple of Margaret related tales which popped up...

1. The plane journeys & airport experience

I had read up on plane journeys with an ostomy bag and found out that it is pretty common for them to expand with gas as you change altitude. Sure enough, that is what Margaret did. It wasn't a huge issue just slightly uncomfortable as the bad becomes solid. I avoided fizzy drinks on the flight as they make it worse and in the end it wasn't too bad. 

One thing I was worried about was getting through security - the last thing I needed was to be flagged up for having metal on me, patted down by a security woman and then having to explain that the package you can feel underneath my clothes is definitely not an attempt to smuggle drugs. I was relieved to stroll straight through with no bleeping machine. 

3. The heat

The heat is something Margaret never had to really deal with before. Obviously her functionality was never going to change but having a big adhesive, sometimes heavy, thing permanently stuck to your stomach in 35 degree heat can get very uncomfortable and very irritating. I surprised myself with how well I coped. I thought I would go crazy and want to rip the thing off but in fact the majority of the time I stayed pretty cool and calm. I found a lot of it was a state of mind thing, if I let myself become agitated and overwhelmed by the heat then things felt ten times worse.

4. Dehydration

Dehydration wasn't something I had given much thought to. A couple of times it did however get the better of me. I was definitely not drinking enough water and sometimes went a considerable amount of time without food, due to early breakfasts and late lunches. My salt intake was also decreased, I am not one to particularly add salt to my food and normally get the extra salt I need through a packet of crisps. The crisps in Spain are largely plain and have very little salt on them compared to the UK. All of these factors meant that at times I ended up feeling very flaky, sick, headachy and shaky. Every time I got a full fat coke and something salty down me, I felt a million times better. It is definitely something I need to be more aware of in the future. 

5. By the pool

The more times Margaret gets wet, the more weakened the adhesive seal becomes. I was in and out the pool or the sea all day so had to be very aware of drying off the bag and especially the adhesive after getting out the pool. The weather dried it off pretty well every time so it wasn't as big a deal as I thought it would be. 

6. Experiences

Despite having Margaret I was convinced I was going to do everything that everyone else did. I went swimming off of rocks, ate all the same foods and ventured up a waterfall for 45 minutes - swimming through valleys of water, battling currents and climbing up rocks. It was pretty exhausting and not helped by the freezing fresh water but it felt like such an achievement to have done it with everyone else! It made me realise how healthy I am. Only a few months ago I would never have been able to do that. 

7. The disabled toilet incident

Finally, there was one particular incident on our return journey home. Caryl (my brothers's girlfriend) and I headed to the toilets before boarding our flight home. There we found that the ladies was closed and it was a one in, one out system for the disabled loo. After a longish wait, in I went. There I was emptying Margaret before the flight, minding my own business when the sliding door began to open. I looked up to see an elderly man stood there holding the door open for the long waiting queue to see... 

The shock had me rooted to the spot and I barely made a sound. He didn't even seem to bat an eyelid, muttered an apology in French and then began to close the door. Very slowly. I continued to sit, on the toilet, whilst the sliding door was slid shut. 

The embarrassment was horrific, especially having to then leave the loo and face my audience AND the elderly man himself. Safe to say I will be barricading myself in to every public toilet I use from now on...

Apart from that little incident the holiday was amazing. I relaxed after a pretty stressful few years, being poorly for over a year, two hospitalisations, Margaret, a break up and my final year of university - it was safe to say I really needed a break and I definitely got it. It was great to stay somewhere we holidayed as children and so close to where we used to live in Spain. Two weeks of eating amazing food, relaxing by the pool and spending time with my family - it was bliss and I am definitely fed up that I had to come home!

Lots of love
XXX

BBC Radio Berkshire TAKE TWO

Hey guys,

I know many of you will have recently seen the brave Bethany Townsend's bikini snap, with her ostomy bags out and proud! This photo sparked a worldwide reaction with millions of people now having seen it.

Many other people have snapped themselves on holiday with their bags on show but this image, in particular, has done a great job of bringing Crohn's and ostomy bags to the forefront of peoples minds. It is due to this sudden media frenzy that I was asked to go back once again to BBC Radio Berkshire and talk on the breakfast show.

It took a while to get it scheduled due to my work and brother's graduation but once it was sorted I headed to their studio with my Dad. He happens to work in the same building so it worked out really well. I was up bright and early and headed in to have a cooked breakfast before going on the show.
It was pretty exciting going in to a real life radio studio! Last time I was on the show, I was only a few weeks out of surgery so was still unable to drive, this meant that I was taxi-ed to the local council offices where I sat in a tiny, cupboard of a room, on my own with an ancient machine, where the lights would shut off every 5 minutes if I didn't move around enough.
The difference in the experience this time round was huge, although I was a bit nervous before going in, I felt a lot better being able to see and hear everything properly. Being able to sit in front of the Radio DJ, Vernon, made it seem like we were having a conversation and I was definitely a lot more relaxed.

The feature started off with my new mate, Vern, talking to Bethany on the phone (the bikini photo ostimate) about her reasons behind the post and what she wanted to achieve from here as well as a break down of the disease. After about 10 minutes and the traffic news I was bought through to chat about my blog and the positive things I see coming from Bethany's photo. I was pretty excited as I got to wear headphones (one ear on, one ear off - of course) and speak in to a huge red microphone - you can tell my life has been exciting recently that THAT was a highlight. I felt pretty confident about what I was speaking about and I think it went well! Bethany was lovely and Vern made me feel comfortable in a pretty alien setting. It was all over in a flash and I was out of there by 9:30!

I hope it will help to bring even more publicity to the disease and educate people. I also hope that if there are sufferers out there, especially girls and women, who lack confidence and are feeling generally rubbish about having Crohn's/IBD/ostomy, that they feel a little less alone and a little better about everything.
I'm not a big fan of the lime light or being the centre of attention, so really thats the only reason why I agree to talk publicly about my own experiences. If me being open and honest helps even one sufferer  or their family or educates one member of the public then I am a happy chappy.

I'm sure if you REALLY wanted to listen to my not-so-great radio voice then you can listen again online. I will update you on my past few weeks very soon,

Lots of love
xxx

Graduation!

Hello everyone!

After my last ranting post, I am incredibly pleased to fill you in with some very good news! Last Wednesday I graduated from the University of the Creative Arts, with a 2:1 in BA (Hons) Fashion Promotion & Imaging! After the longest three years (four if you include my Art Foundation) I am very relieved to have come out with a 2:1. Obviously I would have loved a 1st, something made all the more annoying by missing out on it by a tiny 2%?! I managed to get a 1st for my dissertation and my final major project which means that it largely came down to my 2nd year, to dragging my final grade down.
I hate, hate, hate to ever use Crohn's as an excuse or to ever let it get in the way but unfortunately sometimes, it seems to be unavoidable. Despite my hardest efforts I still wasn't able to achieve the 1st which I know I would have gotten if I hadn't been so poorly or missed so much Uni. Of course, a 2:1 is still an incredible achievement but for me, as a complete perfectionist I couldn't help but be a bit gutted that it managed to get in the way of my full potential. Sometimes it does feel that no amount of incredibly hard work will be able to counteract the 'crap' that comes with the disease. However, after the initial disappointment I can see how considering everything that has happened and the challenges I faced, especially in my 2nd year, I should be very happy.

So, after finding out my grade a couple of weeks ago, I headed to London Festival Hall on Wednesday for my graduation ceremony. Both my brothers couldn't make it so it was just me and my parents, which was still lovely. It was a long, tiring day and at times I got very hot and sweaty - which is not a great look - but all in all I loved it. My dress had been chosen weeks before, and I had tried on multiple different pieces of underwear to find the one which would disguise Margaret the best! I think the final choices worked very well.

At a couple of points I did have a mini panic that she would decide to leak everywhere and my white dress would do little to hide it. I did however go very prepared with a spare dress, just in case! After getting my gown and hat fitted and having my professional photos taken, we had just over an hour to kill, which we spent taking lots more photos. I got to see friends I haven't seen since the course finished and have photos taken with girls that have gone through 4 long years of blood, sweat and tears with me! Due to my Margaret paranoia I decided to try and eat as little as possible before the point of walking across stage. I ate some Haribo up on the train (very healthy) and a full fat coke, but apart from that I stayed away from food until after the ceremony. I just couldn't deal with having her be obvious in all my photos and in front of at thousands of people. In my day to day life I am largely pretty confident about having her, and don't think about it too much, but going on stage turned me in to a complete nervous wreck!
I was terrified before going on stage, I am not one to enjoy the spotlight or be the centre of attention, so having all eyes on me - even for just a couple of minutes - had me shaking. Thankfully, I did not fall over or make a complete fool out of myself, so once I was safely back in my seat I felt much calmer and properly felt that I could enjoy the rest of the day!
After the ceremony, the three of us headed to an amazing Italian restaurant near Covent Garden which finished off an amazing day wonderfully!

It was once home and after looking through the many, many photos I think the day really sunk in and for the first time I felt pretty, damn proud of myself.

XXX

Junk Food - Fuming

So, many of you will have seen in the news today Dr Sally Mitton talk about the increase in young people being admitted to hospital in the past decade. The fact that in 2003/2004 there were 4937 reported cases of young people being admitted to hospital with Crohn's Disease compared with the 19,405 cases in 2013/2014 is a pretty awful statistic. I am part of this statistic and if one good thing comes of this is that it will help raise awareness and funding for research as to why. This dramatic increase has clearly grabbed the attention of the British press and what I take huge issue with is what Dr Mitton goes on to state....

"if you have a lot of junk food in your diet before your diagnosis, it actually makes you more likely to develop Crohn's Disease... a lot of antibiotics - particularly in younger life - seem to be more likely to develop this condition..."

The backlash of this kind of comment is incredibly negative. For a disease already burdened with stigma and assumptions, the last thing it needs is people believing that the reason we all have it is due to stuffing our faces with 'junk food'. Now, people around me will know, that I do love a good McDonald's, however this love began aged 18, 2 years after my diagnosis. Prior to my diagnosis I was a healthy 8 stone, 16 year old, who did dance, netball and karate. My dad still cooked all my meals at home and I had no money to buy my own junk food or takeaways.

As a child I lived the first part of my life in Spain, a country where at the time there simply wasn't processed foods. I grew up on a diet of olives, fresh fruit and vegetables, rice and seafood. 'Kids' junk food wasn't available and children ate the same as adults. My whole life, my Dad has cooked every evening meal from scratch. I have never grown up with processed or 'junk foods'. To this day, aged 22, I have never had a microwave or 'oven' meal.

By making such a sweeping, damaging statement Dr Mitton and the press which quoted her, have managed to alienate and stigmatise an already 'embarrassing' disease. By claiming a link with 'junk food' she has allowed sufferers to think that this horrendous, life changing disease is their fault, and the parents of children with it to believe it was down to something they did wrong. The report basically puts blame on the patients, which is not just incredibly unfair but also ignorant and down right wrong. There are so many possible causes of the disease with the majority being completely uncontrollable such as genetics, pollution and viruses. This 'blame' shames patients and their parents (if diagnosed as a child) who are already battling with the day-to-day crap (no pun intended) that comes with having the disease. I couldn't bare to think of my parents ever thinking that me having this disease was their fault.

Frankly, if parents and patients are to blame for eating junk food and thus having Crohn's then surely a considerable amount of 'blame' needs to be directed to whoever was providing turkey twirlers, potato smiley faces and processed burgers to primary aged school children before Jamie Oliver put a stop to it.

Not once since my diagnosis have I ever been told about 'junk food' or diet being the cause. I have never been offered nutritional advice or been asked to alter what I eat. I would like to think that if this were to be the cause then this advice would have been given by my extremely experience medical staff. Once you have been diagnosed, many people notice that certain foods upset their symptoms or they develop food intolerances. These kind of diet changed or adaptations are very individual to each patient - there is no blanket cause/treatment/diet plan.

The fact remains that having Crohn's Disease comes with a lot of 'unknown' and there are clearly multiple factors and arguments for why certain people get the disease. However, claiming that this is down to junk food and having that aparent 'cause' leading the report is hugely damaging and has a very wide knock on effect. I am disgusted.

Safe to say I am fuming.

Happy Birthday Margaret... what a difference a year makes.

Today is Margaret's first birthday.
I remember, a year ago today I sat in the pre-op waiting room, with my mum, waiting to go in to surgery and have Margaret. The name had already been chosen, and as I was given the anaesthetic I remember thinking about telling the nurse what I had planned on calling her.
(Jeeze - she sounds like my child)

It's only looking back now, that I realise just how poorly I was and how much worse I could have gotten. At the time I was pretty oblivious to how unwell I was, I had gotten so used to feeling awful that I think both me and those around me lost some perspective of how bad I was. I remember sitting, waiting to meet my surgeon for the first time, discussing with my Mum that maybe I didn't look ill enough as I was having a 'good day'.
Half an hour later Mr Surgeon offered to do the surgery that afternoon - clearly my 'good day' wasn't that great. I still remember what I was wearing that day and how ridiculous I looked in one of the huge hospital wheelchairs. Three sleeps later, Margaret was created.

Looking back at the last year it is scary to see how much can change in 12 months.
I have been on radio, had my blog tweeted by the likes of Alan Sugar, Alan Carr, Dynamo and Lennox Lewis, lost 16lbs and bought a dachshund.
One thing I am incredibly proud of is finishing my degree, something which I never doubted I would do but I know could have easily not happened. Completing a degree for anyone is an achievement and not an easy task, I know I have had it pretty bad but there are people everywhere who have gotten through a lot worse. I still firmly believe that everyone has their crap to deal with and I don't really believe that my achievement is that much greater than others.
One thing I do hope it shows people is that having an illness should never, ever stop you, and that with a hell of a lot of hard work there is no reason why you can't do anything you want. I have managed to complete a lot of things on Margaret and I's to do list, although I still haven't met David Beckham, something which I can't get my head round but am convinced will one day happen!

I won't pretend that this year has been easy, months of it were pretty horrendous in fact. I am grateful to Margaret for keeping me alive and making me better. We do, however, have a love-hate relationship. If I had the choice she would be reversed in a heart beat and I wouldn't miss her for a second. I have thought a lot about what life would be like without her and I would do things a lot differently than I did before Margaret. The main thing being wear bikinis. All day every day, Summer and Winter, with every fat roll on show for all to see because until you can't you don't realise how good it is to bare your belly. Whether that will ever happen remains to be seen, but my fingers and toes are crossed.

The people that surround me are what have gotten me through, my amazing parents and brothers and wonderful friends (my girls and Harry in particular) - so to them a huge, huge thank you. One thing I have learnt over the year is who really cares and what really matters and that life is way too short. I value being able to go out and enjoy myself, see my friends and make plans. Spending a lot of time in bed, in hospital, in wheelchairs or on crutches with my arthritic knee has made me really think about my body and how insanely lucky I am to be able to walk, run and dance.

To everyone who has read, or still reads, this little blog and has gotten it to just under a crazy 75,000 views - thank you too. The kind words of strangers still blows my mind.

A year ago I was in a wheelchair, incredibly poorly and terrified of what was to come.
I sit now, a year on, with my joy of a dachshund on my lap, and both the healthiest and happiest I have ever been.

So thank you and happy birthday Margaret.



xxx