07 December 2017
On the final day of Crohn’s & Colitis Awareness Week, I realise how much I have in life to be thankful for. Yes, there are days where I hate everything in life, but this disease does not define who I am.
Although there are days where I sit there and wonder “why me” and I question if I’m strong enough to keep going through the same sh*t each day without a sign of things improving, I am thankful that it is me who has this disease and not my younger sisters or anyone else in my family. There is no known reason how or why IBD comes about, it can be a combination of different factors so why I have Colitis, I’ll never know. But if genetics are a part, as they suspect, then I’m glad it’s me who has the faulty DNA and not my sisters. I hope they never have to go through the process of being diagnosed with any form of IBD, but if they do, I will be there every step of the way as they have done for me. For now, I’m grateful they’re healthy.
I’m grateful that my family are as amazing as they are. My Mum and Dad have been my rocks this last year and I honestly don’t know how I would have got through it without them. They’ve been there every step of the way. They’ve visited as much of the hospital as I have, and had a few overnight stays themselves in the not so comfy looking chairs. They’ve changed shifts at work (and sometimes just walked it) to make sure I’m okay. They have come to all my appointments with me, every single one. Even check ups with my GP. They are there every time I have a mini breakdown and doubt my ability to keep going. They reassure me things will get better and always give me hope that things will improve. They always stay positive no matter what news I get from the doctors. Whether it be about needing emergency surgery, getting a diagnosis that’s worse than expected, or finding out I’ve got an issue that they don’t want to operate on. Throughout it all, they stay positive and help me see the light in the bad situations. Although I do have to admit my Mum has a better poker face than my Dad!
I’m thankful for the friends I’ve made in the IBD community for giving me hope and advice when I need it. Don’t get me wrong, my friends are absolutely amazing, but sometimes it’s nice to talk to someone who just gets it. The blogs and people I follow with IBD and in particular those with aromas are all inspirational and I hope that by writing my blog, I can help just one other person going through this living nightmare.
I’m thankful that my friends have been as amazing as they have been. It’s not just my family who have been on this rollercoaster with me, it’s involved everyone I know. Thank you to those who have been there every step of the way with me, and I’m sorry for putting you through everything.
I’m also thankful to those of you who walked away. I struggle a lot with energy levels and I’ve realised it’s more important to use what little energy I have on those who actually care. So thank you to those who have told me I’m too ill to be around, or that no one will ever love me with a bag, and even those who simply don’t find me interesting now I’m not dying. I’d say thanks for nothing, but you’ve made me realise I deserve better than to waste my energy on those who seem to have “lost interest” in me at some point along the way. So thank you for walking away.
I am thankful to be alive. The odds were against me in November 2016, and I am very lucky to be alive. When they opened me up, things were worse than expected and I needed two bags of blood. If it wasn’t those two bags of blood that had been donated, I probably would not be here today. I can never be a blood donor myself, as I have now had a transfusion. But the transfusion saved my life. And I think I can speak on behalf of anyone who has ever needed a transfusion, we are eternally grateful to those who donate blood. You literally save lives.
I’m thankful for the skilled surgeons and nurses who fought to save my life when I was in the table and things started to go wrong. I only know the name of one member of the team who operated on me, and as skilled as he is, I know he wasn’t alone. So thank you to Mr Tutton and his team.
I’m thankful that I am still under the care of a brilliant team. Most ostomates will think the same about their nurses, but I honestly think mine are the best and I love them to pieces. Emma, Jen and Karen are all incredible in everything they do. They’ve been there through the tears and self hatred and encouraged me to do what I want to do. They’ve helped me to see that life doesn’t end when you get a bag.
Along with my nurses I am under the care of a new surgeon now, Miss Gupta. She understands that I’m in no place mentally to make a decision about more surgery and she’s happy to leave the decision about what and when entirely up to me. Unless things deteriorate massively and my life is out in danger again, any decision about surgery is entirely in my hands.
It’s not just the medical professionals who have saved me though, it’s everyone in my life. So thank you.
Colitis is a sh*tty disease but I’m thankful I’m still here to tell my story and hopefully help others in their journey.