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Thursday, 12 May 2022

Starting Life At 30 // My IBD Journey

When you’re young and you’re asked what you want to be when you grow up, those around you will always remember that first ever answer. I wanted to be a singer. I remember that and also wanting to be a dancer, a figure skater, a mum, a teacher and as I got older and started to align studies towards having a career, I decided I wanted to work within forensics and criminal justice.

Unfortunately, it did not work out that way for me, despite how hard I tried. Being diagnosed with Ulcerative Colitis turned my world upside down and shook everything I was. Since symptoms started at 19, I had gradually developed into having the label of “the sick one”. Friends started inviting me out less and less, milestones that I wanted to have reached by a certain age were passing quickly and by 25 I had just succumbed into a state of depression and pain that I did not think I would make my 30th Birthday.

In such a constant cycle of being pushed from department to department within the hospital I honestly didn't expect to be writing this post today. I knew I needed to do something. It took a few more years but I changed consultant, signed up for medical journals, read up on all new treatments and options, spoke to the most amazing people in the IBD community and eventually saw a surgeon. In February 2020 I had my first surgery to form a loop-ileostomy. The goal and the hope were that it would give me back a better quality of life, but I could still go ahead and try new medications to see if there was going to be something that kept the Ulcerative Colitis under control

10 days after I was released from hospital, people classed as clinically vulnerable were told to essentially shield and not long after the first lockdown in the UK came in.
Over the first two years of covid at its height, I couldn’t keep the flare ups under control and although I’d initially gone in with the idea of having a subtotal colectomy on my first ever meeting with the surgeon, it was still upsetting and disappointing that another plan hadn’t worked. And so, we f
ast forward to last Thursday and well, it was a doozy.

Pre Surgery

After having a good cry, I got into the car and made my way to the hospital. This operation was going to be a lot bigger than the last and that of course gave me anxiety, how could it not? But with covid restrictions still very much needed in place for hospitals my biggest fear of being alone was there, my parents couldn't come in and wait like last time.
After another Covid and MRSA test I had some really uplifting and lovely talks with 3 other women who were also waiting for surgery. I watched them leave one by one as I had the surgical and anesthesiologist team round to discuss the surgery with me and it very much dawned on me then what was happening.

I had made this choice and although I could have said no there and then, by saying no meant I was then consenting to living the way I was and I knew my mental and physical health couldn't take anymore. It also became apparent that my fear was not just having major surgery it was that, this has to be the thing to fix me to an extent that I could live, so who am I going to be when it's all over?

No, not that C, Evans...unfortunately.

The Surgery & An Unexpected Turn

I remember donning on my lovely hospital gown, compression stockings and slippers my brother gifted me for Christmas, being wheeled down to the room before theatre where you get sorted and put to sleep. I was chatting with the anesthesiologist team, them trying to put me at ease. A little under an hour before I was given numbing cream on my hand because I'm such a wuss when it comes to needles and cannulas so we were joking about that. 

I don't remember much after waking up in recovery other than everything went well. I had a spinal block so I wasn't in a lot of pain, the surgery was done laparoscopically which also helped and I remember asking to swap from the oxygen mask to the little nose breathing tube as my mouth was so dry.

A few hours later, in the early hours of the morning things took an unexpected turn. When given anaesthesia I basically conk out and sleep deep. Whilst I was doing that, I was continuing to have rising lactate and acidosis levels with no obvious cause. This can be very dangerous and I was woken up to be told I was being taken back to theatre with suspected internal bleeding. A lot of my memory from that moment is fear and upset, I remember my name being called quite a few times as I was so disorientated, I remember speaking on the phone to my mum and making one nurse upset as I tried to get her to promise me I'd wake up again. I also remember one nurse looking like my year 4 primary school dinner lady and thinking "I'm naked on a theatre table in front of my dinner lady" which thinking back to now I also realise that I remember being in theatre and being under those huge lights that you only really see on TV. 

Post Surgery 

Waking up a second time, I vaguely remember speaking to my surgeon who said two things, "you ruined my evening" and "you scared me". If you can't get a surgeon with a sense of humour then keep looking. Thank god there was no internal bleeding but still have no real reason as to why my levels rose so high so quick after the first surgery. I had another cannula in, a catheter which was my first experience of one and wasn't too bad but they did put a central line in my neck and I honestly can say I was not impressed with that at all. It wasn't painful it was just uncomfortable and felt very heavy. 

I slept some more and woke up again to see my parents. I had the most lovely nurses in ITU, one braided my hair into a bun away from my face for me and I had an IPC or Intermittent Pneumatic Compression, which is a machine that helps the circulation and as it would inflate and deflate another nurse would rub my legs in between and make sure I was comfortable. 

I was then moved into my own room for a few days, before being moved to a shared ward the Sunday night. By Monday night I was discharged back home to recover and I can honestly say, for me, that is the best thing. I sleep a lot better in my own bed. 
When in my own room at the hospital I could sleep and rest a little but I was also on clear fluids only, despite a doctor saying I could eat a light diet. Mum had to come in and speak to someone as between Wednesday and Sunday I'd had maybe 5 mouthfuls of soup, a jelly and some ice cream. I was starving, I was pressing the morphine pump I had to sleep so I didn't have to think of the hunger, so come Monday morning when I could eat breakfast I was a lot happier. It's the only downside to being in your own room, on a shared ward you hear everyone's story and the nurses hear what's happening too. Whereas one nurse told me I couldn't have a cup of tea because I couldn't have dairy (no idea why) and yet the other nurse gave me ice cream? 

7 Days Post Surgery

It's now been a week and I'm on some great painkillers. I'm still quite tired and sore and unfortunately came home from hospital full of cold. I feel like this is it now. I'm relearning which bag is going to be the best for Stitch 2.0, waiting on the wounds to heal up as nice as they can and for my yellowy bruised skin to go back to normal. In a few weeks time, I'm going to be able to start living and I am scared. Who am I going to be? What am I going to be? I feel 15 again and being told to pick my GCSE options. I really hope you stay around to see my journey and I hope I become someone worth the chance I've been given.

Hello, I'm Hannah Marie Brankley and I'm starting life at 30.

As always, thanks for reading...

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