Guest Blog - Polly's story

I wanted to start a blog during the summer of 2013 but wasn't brave enough to write down all my thoughts and feelings. I am now 1year in remission so it seems fitting to tell my story and show you all how far I have come.  I’ll start at the beginning…

My 2013 started sick, in bed, in my mother in laws house whilst all my other 20 year old friends partied hard. I was so jealous! That's pretty much how the whole of 2013 treated me - sick!

Between August 2012 and October 2012 I was fobbed off with IBS, stomach bug, celiac and just that I was allergic to certain foods. It wasn’t until one lovely nurse in A&E realised that she had seen me most weeks and decided to put me on the list for a colonoscopy as my inflammation levels were sky high. Alas I was diagnosed! I wasn’t going mad, it wasn’t in my head, I had Crohns disease!  I knew absolutely nothing about this scary thing except that it stopped me socialising and going to work. It was completely debilitating!

Ever since my diagnosis I wasn't your usual crohns patient  I couldn't keep any food down, and my tablets wouldn't control anything which meant I was in hospital nearly every other week, being put on a steroid drip and fluids. I think I was naïve to think that a diagnosis meant I wouldn’t have to keep going back in to hospital, but how wrong was I. I seemed to miss every occasion possible including my boyfriend’s birthday, my sisters 18^th surprise party (organised by me) and my work Christmas party. I was determined not to be sick on Christmas though, and I wasn’t! It was probably the one day in 2012 that I could enjoy eating and being with my family, and it was probably the one day my Mum had off from taking me to the hospital! I felt positive then that maybe 2013 would be better, and maybe I would be better for all 2013 had to offer me.

Constantly sleeping (especially with the dog) = my 2012/2013

In April 2013 it was my big 21st... I spent most of March planning my birthday party, and I don't know if it was the excitement of it all or whether it was just generally a good month but March was one of the few months I didn't have to make my way down to A&E! My party was just as I wanted it... Full of alcohol, laughter and dancing! It was probably the highlight of my year, and I often look at the photos and smile at how happy everyone was. Thanks to alcohol I don't remember much of the night, but I know it was a lot of fun, and I know that I wasn’t sick because of my crohns & it was purely self inflicted!

A couple months passed and a few more hospital trips later it was finally time for my auntie's wedding! It was hit and miss as to whether I would be able to go as I spent most of June in hospital but July 6th came and I was well! It was so lovely and warm and a day that I was looking forward to since we found out about it! It was mine and my boyfriend’s first wedding to go to together and I couldn't wait for a picture of him in his suit & me in a nice dress. The day was perfect... I stupidly left all my medicine at home so we couldn't dance the night away but we had fun. My auntie looked absolutely gorgeous and she was so happy. I was SO glad I didn't miss such a special day.

On 15th July I went back to work after quite a few weeks off. I was struggling and couldn't work out if it was the heat or whether I was just tired because I had been out of work for a bit. I remember thinking I couldn't be sick again, I'd literally only just gone back to work. Thursday night, 18th July, we'd had a barbeque but I couldn't keep my food down. I kept running to the toilet desperate for it not to mean another hospital trip. Early hours of the morning, it got to the point where I couldn't even keep water down & that's when mum and Conrad (my boyfriend) had enough and took me back down to North Middlesex A&E (we were on first name terms at this point). Luckily I was admitted quickly this time, there was no messing around - they even put me on morphine because the pain this time was so bad. I LOVED morphine - for the next 2 weeks it was to be my best friend. Friday 19th July consisted of CT and MRI scans where they finally decided it was time to operate. My heart broke. I knew that an emergency operation was not good news. The surgeon came around and told me all about the procedure & the dreaded news that I was to have a temporary stoma bag. I cried & cried. I was so devastated and thought that my life was over. 21 with a stoma bag - how shit (literally). I remember asking myself and everyone around me, why it had to be me. On the Friday night, my very lovely stoma nurse Veronica came round to give me a talk about what it would be like, how to cope & where it would be. Veronica reassured me that life could be so much worse. Her words were meant to comfort me, but actually were not comfort at all. Unless it meant I didn’t need to have a stoma bag, I didn’t want to hear it. I told Conrad that if he wanted to leave me he could, after all who wants to be with someone with a stoma bag? His reply was quite simply, ‘shut up and stop being silly.’

My emergency op took place bright and early on Saturday 20th July. I remember waking up much later on that day and the first thing I did was cried. I couldn’t imagine looking down and seeing this thing sticking out from my tummy. I just wanted it all to disappear, I wanted to disappear. To me, life couldn’t get much worse than this. I didn’t know what to expect and what it would look like, I was terrified. The first night it was cleaned and changed the nurse asked if I wanted to have a look, I cried some more. Of course I didn’t. It’s only when I look back now that I realise Saturday 20^th July wasn’t the worst day ever, it was in fact the day my life changed. It sounds cliché but it meant there was no more being sick every time I ate and it actually meant I was in remission.

It was a painful recovery and seemed to take forever. August 3^rd was my first ‘public appearance’ since my operation and I knew it would be overwhelming. It was my Dad’s 50^th birthday party so it would be full of family and fun. I think I was just excited actually to just get out of the house! Mum, Conrad & me didn’t stay for long because I was knackered, but we stayed for long enough for my scar split open because it would appear I had overdone it! That slowed me down big time. I was literally back to asking people to do everything for me and felt like I had lost my independence again. The only thing that kept me going was knowing that my stoma bag would be gone if I could keep healthy and off steroids for 6 weeks.

August 21^st – the first appointment with my consultant, post operation. Music to my ears – I was told that I was ready to be ‘put back together’… I cried – I was so happy!! Finally I could see the light at the end of the long tunnel!

Knowing that this was a temporary situation I decided that I wouldn’t let having a stoma bag stop me. I started working from home on a part time basis (I was so missing my work friends). I also moved in with Conrad... Our very own flat in a little town outside of London. Everything was falling in to place. My reversal happened on Monday 4th November and all went well - thank god! I could finally start being 'normal' again. I could go out for dinner without feeling sick, I could drink with friends and I didn't have to cancel plans last minute. I enjoyed Christmas 2014 with all of my family, and on New Years Eve (unlike the last one) I was able to see the New Year in with friends drinking lots of Prosecco. I just knew that 2014 would be amazing for me.

Earlier this year there was a campaign on twitter (in response to the no make up selfies for breast cancer) called #getyourbellyout to raise awareness and money for Crohns & Colitis. It basically involved putting a picture up of your belly to show off your scars or stoma bags. Guess what? I was brave enough to put my picture on my Facebook and twitter. That was a huge thing for me, because for a long time I was scared at what people’s reactions would be. You know what though? I love my belly, and I love my scars. They tell my story! I could be slimmer yes, but when I was skinny last year I was unhealthy. I would much rather be healthy with a bit of a tummy then skinny and unhealthy. I even wore a bikini and showed my scars off on holiday in May this year.

   

My #getyourbellyout photo

 

Showing off my scars in a bikini

 

Looking back now I learnt a million lessons. Yes it was a shit time, but they do say everything happens for a reason. I learnt that health is probably the most important thing ever – way more important than money & material objects. I learnt that nothing seems to break me & Conrad – I thought a stoma bag would scare him off but it didn’t – look where we are now?! And the most important lesson of all was that I have so many people out there who love me, and they are the people I am going to put all of my energy in to. I am genuinely so happy and healthy, and I look back at the experience now and it feels like a distant memory. There is no guarantee that the big ‘C’ won’t come and bite me on the bum in years to come, but I know that I am strong enough to beat it. I know that actually having a stoma bag is not the end of the world, and I could do the same things as everyone else if ever I needed to have one again. You don’t realise how lucky you are to be healthy, until you are not. I wake up every morning and count my blessings. Things could’ve been so much worse!

If there is one thing for you to take away from my blog, it’s not to give up. There were so many points during my story where I wanted to just go to sleep and not wake up. The tunnel is long, but there is a light at the end of it. My story was a happy ending, and I think I’ve been quite fortunate to be symptom free (I know many people who aren’t). I look back at my experience now and I smile. I am thankful everyday for the position I am in. My wish for 2014 was good health and happiness and so far, so good!

Polly x