Colonoscopy Day

Hi everyone,

So yesterday I had my wonderful colonoscopy.
The prep started Wednesday night with having to give myself two enemas... lets just say the less we talk about that the better. Although not painful and hideous like last time, it still wasn't pleasant. It baffles me how people opt to do that kind of thing, out of choice...

Anyway, I was up bright and early yesterday morning to get to the hospital for 7:30am. Nerves meant I had barely slept the night before so had to drag myself out of bed with only 4 hours sleep. Mum drove me to the hospital and I checked in as usual, in to bay E3 (I hate the number 3 - not a good start). I had to change in to a gown, awful socks and was visited by various nurses, my anaesthetist and surgeon. Luckily I was the first person in to surgery, which meant I only had to wait about an hour before being escorted to the surgery room. Normally this is done by a nurse but this time I headed down with the surgeon himself. He was cracking jokes the whole way which did actually put me at ease. I knew what was coming and so strangely didn't really feel too nervous as I led down on the bed and had my blood pressure taken, heart rate monitors fitted and finally a cannula put in my hand. As I went off to sleep the nurse and anaesthetists were chatting about The Tower of London and London Dungeons... not the nicest thing to hear before you're sedated.

The next thing I remember is being jolted awake, I must have been sleeping really deeply as I woke up with such a shock and the tube still down my throat. Within a second it was removed which although was bizarre, didn't frighten me like you'd think it might. I was given an oxygen mask and had everything checked over. Apparently I had been asleep for half an hour, which is such a strange thought. I overheard a nurse say "keep a nurse with her, after what happened" - this massively freaked me out and I became convinced that something terrible had occurred and nobody had told me yet. I asked if everything was alright and a nurse said that there had been no complications and the surgeon would come to see me soon. I started shivering which now that I think of it, did happen the last time I was given a general anaesthetic. Apparently it is quite a common reaction and I was given an extra blanket. At this point I was wheeled back to my E3 bay and my Mum was bought through.

Apparently I was chatting away and repeated myself twice, although I can't remember any of this. I was brought some jam on toast and some water and waited to feel a bit more awake. It is crazy how worn out you feel whilst still coming round. I remember moving my leg and thinking that it would have to stay there for hours because I was definitely too tired to move it again. Time also goes by so quickly, one minute it was 10:00 the next 11:00. This is when the surgeon came through to see me and told me news I wasn't looking forward to hearing.

He explained that although there had been no complications there were areas of my intestine that the probe/camera wire could not fit through, no matter how hard he tried. This meant they had to take my bag off and go through Margaret to get a good look at the other side. Now this probe thing is probably the size of, if not smaller than my little finger, the fact that my intestine was so damaged/scarred that it couldn't fit through was hardly confidence building news. He then went on to tell me that there was some Crohn's along the right side of my intestine and that the 'perianal' (the bit nearest your bum) was also badly scarred and he had his doubts that it would work effectively again, explaining that he would be concerned that if I were to have Margaret reversed I may not be able to control my bowels properly. He did say that all the results from the biopsies would be examined further and that my consultant would get in touch and give me the final results. Now although this is still a month away, the answer was pretty clear. The likelihood of me having Margaret reversed is looking even slimmer. Obviously, I am pretty gutted but I think I knew deep down that that was the case anyway. I have been tired recently and my knee has been bothering me a bit, so the fact that I had Crohn's there didn't surprise me. The fact that it is the perianal area which is so badly damaged is also tough to hear as this area can't really be removed or resected, which doesn't give me many other options other than to keep Margaret. The surgeon also told me that if I were to have children in the future they would need to be born via cesarian rather than naturally due to the state of my perianal area.

I was eventually discharged after the nurse made sure I could wee and walk on my own and Mum and I headed home. All I wanted to do was crawl in to bed, which is where I spent pretty much of the remainder of the day, although I did eventually get up to eat some pancakes (of course). Last night I had another rubbish sleep and have been worn out and feeling pretty rubbish ever since, most of this will be down to the anaesthetic getting out of my system. Today I've also had various mind blanks, becoming unable to remember my pin code or what I walked in to a room to get, which is bizarre but again down to the anaesthetic. I will hopefully feel a bit more human again over the weekend.

The news is obviously not what I wanted to hear and although not 100% confirmed, was made pretty obvious, but we shall see what the consultant says in November. I think it is going to take me a while to get my head around

Lots of love,
Gabi xxx

Thoughts

Hi everyone,

I wanted to talk about something which I am sure I have touched on before but probably not gone in to much detail. I know a lot of people read this blog, and look to it for a positive story and good outcome from a pretty crappy disease (excuse the pun). I am often conscious of not freaking out pending ostomy owners or making things seem awful - because in so many ways they really aren't that bad. However, at the end of the day there are aspects of the disease and having an ostomy which are hard to get your head around.

One thing Margaret has had a huge effect on is my self confidence. I think it is normal for everyone, men and women, to have a crisis in confidence from time to time or to have bad days. But Margaret makes these bad days worse, something I am sure other Ostomy friends can relate to.
In many ways, however, she has changed my outlook on my appearance for the better. As I said before, I have managed to lose 2.5 stone in the past 9-10 months - something which was largely spurred on by having Margaret. I also think I care less about the little, stupid things about appearance which are very easy to get sucked in to. I have found that that bit of cellulite on my thighs or a tummy roll when you're in a bikini doesn't matter as much to me anymore.

The upcoming colonoscopy and subsequent decision on whether I can have Margaret reversed has got me thinking a lot. The thought of having Margaret for the rest of my life is incredibly overwhelming. I try to think of it one day at a time, or one week at most. The idea that there are still decades ahead of living day in day out with a bag stuck to my stomach is quite hard to get my head around. My reaction when I was told I had Margaret wasn't normal, I laughed. Since then I have been praised with how well I have dealt with it and how I haven't let it stop me. Despite being told I had a 1-2 in 10 chance of having a reversal, I don't think I have ever really, properly considered the fact that she really might be forever. Even now I catch myself thinking, "When I don't have Margaret I will be able to wear that again" or "Dating will be a lot easier when I don't have Margaret" - these are really dangerous thoughts because the reality is, it is very likely that me and Margaret will be mates for a very long time.

Until Margaret, my Crohn's was a largely hidden disease. Yes there were times when I looked really poorly, lost weight, lost my hair, gained a bunch of weight on steroids or spent time in a wheelchair but more often than not a stranger wouldn't know I had a long term health condition. In some ways this made life harder. People wouldn't or couldn't understand just how bad it could be because they couldn't see anything, it was hard to understand. The plus side of course was that unlike many awful health conditions the lack of outward symptoms kept the disease hidden and allowed me to live my life without always being seen as "ill". Since Margaret, however, I live with a constant reminder that I have a disease and will have this disease for the rest of my life. Every day I have to feel, touch or deal with Margaret. I can't ignore it or forget it, I have to plan around it and think about it all the time. I know that 99% of the time the advances in the stoma wear and fashion means that nobody has a clue I have her, but I always know. Yes its a lifestyle change and something that I have adapted to very quickly and I have never let Margaret stop me doing anything but she is also something I can never escape from. I can't just decide I have had enough for a couple of hours and need a break from it all, it is constant and will likely be constant for the rest of my life. On the day of my graduation, for example, rather than relax and enjoy the ceremony I spent an hour and half worried sick that Margaret was going to leak or swell up under my dress and that the auditorium of people were going to see it. The same thoughts go through my mind every time I am at the gym. It can be draining as it is without adding in the fact that it'll probably be this way for years. Although it is also really important to add some perspective to my life, there are people out there who are suffering a hell of a lot more than I am and dealing with things which leave me in awe. I only have to switch on the news to consider myself insanely lucky.

It isn't however all doom and gloom. In the months since Margaret I have graduated (on time) with a 2:1, gone on holiday and many nights out, lost 2.5 stone, been interviewed for the newspaper and on the radio, kept up this blog with amazing celebrity endorsement and lots of lovely readers, raised over £4,000 & set up my own business. It does give me great hope that despite the fact I don't like what I see in the mirror, if I do have Margaret forever I will still achieve and do everything I want to. And you never know, in a months time when I see my consultant, I could be writting a Bye Bye Margaret post.

Lots of love
Gabi xxx

The Big 2.3, Toby's Birthday & PreOp

Hi everyone,

So since my last fairly long update I have been kept very busy!
Mainly by my Kickstarter project, which I explained previously. In one of the most stressful 30 days of my life I have managed to raise an amazing £4,000 to help further my new business, Chroma Stationery. The response has been so great and I am overwhelmed with the kindness of friends, family and complete strangers.
The past few weeks have been hugely stressful and an unexpected emotional rollercoatser. One day I was worried sick that I wouldn't meet my target or that I had offended people, having sleepless nights. The next day I would receive amazing feedback, a generous pledge or a high profile share and my mood would be lifted. Kickstarter has taught me many things, good and bad but it has made me realise the huge kindness and generosity of people out there. I have had lovely emails and insanely high donations from people I have never met or old family friends. Each pledge no matter how big or small meant the absolute world. Some wonderful friends even thew an event to raise the profile of my Kickstarter campaign and bring in some money. If anyone still fancies pledging some money, the project will still be live until October 20th! https://www.kickstarter.com/projects/110560545/chroma-stationery

Some of my recent notebooks!

The stress of the experience has taken its toll though and I feel like I need a weeks holiday! The support of some of my amazing friends and brothers has been incredible and a special thanks to my Mum and Dad for their huge, huge support throughout the whole process.

This month also happened to be my 23rd birthday! Or the big 2 3 as I came to reference it. I had such a lovely day, spending it shopping with my Mum and generally chilling out! That evening I went out for a curry with some friends, all 26 of them! The contrast from my birthday last year was huge and I loved being surrounded by my favourite people in the world. The end of September also marked Toby's 1st birthday, an exciting day for everyone, as you can image. I even sung Happy Birthday to the very bemused looked dog.

I have also managed to officially lose 2 and half stone!! Something I have worked so hard at. For years I have tried and failed to shed the extra pounds, largely but not entirely down to being poorly and on/off steroid treatments. Being able to finally start to be happy with how I look and wear the clothes I want to wear is a novelty I am yet to get over.

But back to some Crohn's news for you all! Yesterday I headed for the local hospital for an appointment with my Stoma nurse. I have been having issues with the skin around Margaret becoming really sore. Due to my lengthy allergy list and sensitive skin I'm not surprised the skin is starting to have enough of being covered up with a big adhesive "flange" (eww). It has ended up turning an angry red colour, covered with little red spots some of which bleed, which isn't very pleasant. Last week after putting up with it for a while and treating it myself I decided enough was enough and called for an appointment. Luckily the stoma nurses know what they're doing and sent me home with a new type of bag, different wipes and powder to dry the area. Lets hope it starts to feel better soon!

I then had my pre-op for the colonoscopy I am having next week. Normally you don't need a pre-op before a colonoscopy as they don't really sedate you, however, due to past experiences I am being pretty much knocked out. The sedation required means I had to trot along to an appointment, where they measure things like your blood pressure, weight and height as well as swab your nose and throat for any infections... lovely! The waiting room at this place was pretty grim and depressing. After filling out a lengthy form (something I of course enjoyed) I headed in to see the nurse. She looked vaguely familiar but the amount of time I have spent in that place thats not really surprising! Turns out she remembered me too, from treating me on the hospital ward nearly two years ago - due to my youth compared to the other patients apparently. After ten minutes in there I was declared fit for "surgery" and sent packing ready for next week.

I will of course, update you all over the next with how they colonoscopy goes!

Love,
Gabi xxx

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