To say it’s been a challenge this year, is abit of an understatement.
I went into 2016 knowing I would be having surgery and thing would be unstable for a while. The build up to surgery was agonising but I knew it would improve my future prospects of getting along with my illness – it could become easier to treat, more manageable, I would be in better health and I would respond better to whatever life threw at me.
I also went into 2016 with these goals in mind:
I don’t feel like I’ve achieved them or failed at them. It’s just that things took a turn that we didn’t expect and my goals weren’t particular high on my priority list when I was feeling as rough as hell. But, I am accountable. I’m not making an excuse for why I didn’t and I am not using my illness as a way to get out of it, but I have achieved so much more that those five things I listed back in December 2015. And despite all my set backs, I have learnt how to cook better – just now caterting for an ileostomy. I am writing more. I haven’t read as much or gained a new hobby but I physically couldn’t for almost six months. I am more confident with myself but that’s because I am proud to be an ostomates now, I still need to bring up my levels of confidence again next year.
So, what has 2016’s highlights been?
- Going through not ONE but TWO major surgeries.
- Managing a stoma.
- Spending my 28th birthday in Cornwall with Ben <3
- Learning to love blogging and writing once more.
- Fighting for my patient rights with my IBD team.
- Surviving my first major blockage and post-surgery hospital admission!
- Finding my love for new food – they don’t hurt me anymore!
- Becoming more active in the online ostomy and IBD communities.
- Travelling away from home on my own with my ostomy.
- Visiting Coloplast HQ.
- Working more on my own personal development.
I made this little beauty some time ago but it’s still true today – and up to date! – this year might have been awful on the one hand but it’s awfulness has brought me some wonderful happy memories in the time after. I know we shouldn’t have to go through the worst times to get the best times, but even the good times are the best because you appreciate them so much more because of the awfulness you’ve been through and experiences. Does that make sense?
So I might have hated having to spend my summer sick this year but I have been able to enjoy so many good days in the weeks and months since my ostomy surgery, I have no doubt that it was by far the best gift ever. It was a tremendously hard thing to actually do – sign my colon away to my surgeon and have an ostomy created – but I have lived since. I wasn’t living before, I was just surviving. That was my darkest time of 2016. Those 10 days prior to surgery, going back and forwards in my mind, having TPN feeding, not sure of what would happen, praying for some good to come from this, for it to not be like the last surgery, conscious to not make the same mistakes again, to hope my body would finally be rid of whatever had been making me so ill for so long.
That was my turning point.
Everything before it; even though I had some great times, is nothing compared. But I can’t neglect it for what it is.
I had a great 28th birthday in Cornwall – fast becoming a tradition, thanks to a Spring birthday.
Me and Ben celebrated four years together, we attended lots of family meals and had days out. We tried to make the most of our time before I got sicker and then recover from surgery. We made plans, we got closer and we have a stronger bone now, more than ever. I’m grateful for 2016 for that; we’ve been through it all together.
Going through surgery twice certainly solidified some family relationships and changed others. I have gotten closer to my mom, she is practically a saint and is worth her salt. My dad is stoic and grounded, always the voice of reason. The combination of them together is what keeps me going, it’s a nice working balance. Things between me and my brother have improved greatly too and I am able to accept my new challenges with him, his partner and my immediate family.
I gained new friends with ostomies and I adore that. The connection I feel with them is so much stronger than my IBD family. Not that they have been neglected but my challenges and outlook has changed. For a while, I felt like I couldn’t connect to my IBD side of things because I was so well and my ostomy was functioning and I was living again. But now that I’m experiencing some small symptoms of my Crohn’s disease, I realise that my IBD will never go away; I must keep my connections, careful to not burn any bridges.
So despite loosing my job in February, loosing my terminal ileum in May and finally loosing my colon in August; 2016 hasn’t been a loss. I’ve found new focuses and new interests to keep me grounded. And without the pain, my ostomy has certainly improved my life greatly.
So, what have I learnt living with an chronic illness in 2016?
- Do not take your health for granted.
- An ostomy waits for no one, it will keep going despite what you’re doing or going through.
- If you are in pain and this is not normal for you, seek help.
- If you’re not heard; speak louder, make a fuss, do not take no for an answer!
- Take online suggestions and remedies with a pinch of salt. Always consult an IBD nurse or Stoma nurse for medical advice.
- Good days come and go, but good people will stick around for the bad times.
- Strength can be found in the bleakest of times.
- So can happiness. Seriously, J K Rowling was on to something.
- Ostomy problems and pain can be very acute. If they do not resolve quickly, seek help.
- Do not suffer in silence or alone.
- Find something that makes you smile. Reading, music, videos, poo jokes, memes; whatever it might be, it can carry you through.
- Being addicted to painkillers is real and is horrible to get away from. Please use with caution.
- Vent that anger! Holding on to it only makes things uglier.
- Appreciate those who care for you. A simple thank you goes along way.
- Try and find the positive. Not everyone’s story or journey is the same but we do deal with the same issues, just in our own way. Finding a way to cope and be happy with your lot can help a great deal.
I’m unsure if my year has been awful and I’m extremely optermisitc now or this was all meant to happen to me, in this order, at this time, because I could handle it – or indeed learn to handle it all – but this is my lot. I am happier with my ostomy than I ever was without it.
The fight for awareness for being chronically ill, for IBD awareness, ostomy awareness and fighting against poo being taboo continues!
Here’s to all the wonderful new things 2017 will bring, cheers!