Friday, 24 October 2014

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

Monday, 20 October 2014


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

Friday, 17 October 2014

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!

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!

Gabi xxx