Monday 3 June 2013

The Bombshell

Hey all,

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

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

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

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

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

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

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



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

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

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

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

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


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

Thank you all for reading, 
Lots of love 
xxx

14 comments:

  1. You have put such a positive spin on this and it will be inspiring to so many people in the same situation. Have you ever seen this blog I just came accross? http://staceystoma.wordpress.com/fashion-with-an-ostomy/ best of luck thursday xxx

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  2. Thank you very much! I haven't no! I will check it out now :) xxx

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  3. This is such a good way of viewing this. Living and managing Crohns for the past 6 or 7 years I've always been worried that I might get to a state where I'd need this opp but it's so good to see someone with such a positive outlook. Inspirational indeed.

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  4. Hi gabi! Just had a read at your blog after Alan Sugar retweeted it!! I am currently going through my worst flare up to date (like you, I have full crohns) and am on prednisolone, which are not working at all. Consultant app tomorrow so fingers crossed!

    Good luck with your op on Thursday :) I hope it all goes ok for you and you feel better with Margaret! I'll keep looking at your blog for updates and to see how you get on.

    Much love to you xxx

    Kelly xx

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  5. I just wanted to wish you all the best for the next few weeks. Your blog is great. Stay positive x

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  6. Best of luck for your op! I think its great that your raising awareness as many people can feel isolated when it comes to these kind of conditions. Take care, keep smiling xx

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  7. Best of luck from a fellow Chronie xx

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  8. Hi Gabi,
    I read you blog after Lord Sugar retweeted it. I just wanted to wish you the best of luck for Thursday. My name is Dave & I'm 34 years old but my ileostomy is 12 years old. I had Ulcerative Colitis from the age of 17 & by the time I was 22 my body had just about given up on me. I wont bore you with the details but suffice to say I went through every treatment under the sun & tried so hard to keep an operation at bay for as long as possible but eventually my luck ran out & my love / hate relationship with steroids came to an end. I just felt glad to have made it through my Alevels & a degree in the meantime, but looking back God knows how I I'd it. Like you I think had just been so ill for so long that I'd forgotten how it felt to be well, so my life seemed normal to me.
    Having the op was the scariest time in my life & I really felt as a 22 year old guy I wasn't ready to give in to such a life changing event, but once it was done & things calmed down, it did just that - changed my life. Within a few short weeks I felt better than I done in years & best of all I was in control for the first time in years too. I hadn't realised how mentally exhausted I was from constantly worrying where the next toilet was, how Ill or tired I felt etc and having the op lifted all of that anxiety off me and gave me back my freedom. Within 6 weeks I was working full time, exercising, socialising & eating what the hell I liked!
    I won't lie & tell you life with a stoma isn't without it's quirks and issues, but for me it really did give me back a quality of life I had forgotten existed. I hope it does the same for you.
    Dave x
    PS - the fake stoma thing sounds amazing, they didn't have them when I had mine & they got some poor woman on the surgical ward to show me hers the day before my op. I went completely white & almost threw up with shock (how rude!) so to have had some time to get used to it by myself would have been awesome. I'm sure 'Margaret' is going to do you proud.

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  9. You are a truly inspirational person Gabi.
    Best wishes for the next few days,
    Lots of love and God bless
    xx

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  10. Hi goodluck!!! I was so close myself during these past last years! Be strong and it will be fine, promise!! Must say I was eating chips, crisps then I would be real bad again, I know u don't need to hear this but diet it key, and chips beer is the devil

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  11. I just wanted to say good luck for Thursday. Your positive attitude is wonderful to see and I really hope this operation makes things easier for you.
    My husband had his ileostomy nearly nine years ago and he lives such a normal life that very few people know about it. I hope things go smoothly for you too.

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  12. Hi Gabi, your blog is really good for young people I wish I started a blog 18years ago (I was 11 when I 1st permanent major stoma operation, now I'm 31) and been in and out of hospital all my life and it is a life changing experience but now I'm married to a awesome husband and I don't let my health get me down.... So well done to you for doing this inspirational blog and hope you become very successful in the battle of the fashion industry lol :):)

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  13. Hi Gabi,
    I've heard bits and pieces about how you're getting on via your Dad, however, reading your blog has given me a much greater insight into what you've been going through. The way you are facing this condition is truly amazing. I know many other people with Crohn's and UC and have sent them this link so that they too can read how you're coping with everything. Good luck with the op, keep smiling and stay strong :)

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  14. Hello Everyone,
    Just read through all of these comments again and just wanted to say a huge thank you to you all for being so amazingly kind and supportive.
    XXXX

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