Decisions decisions...
I don’t like flying. I had a long think about it once as to why that was, and I came to the conclusion that I just hated the loss of control, not being able to do anything if shit hit the fan.
Don’t get me wrong, I’m not a control freak, I’m pretty laid back. I can happily sleep until 11am, I have zero routine and tend to say ‘knock the telly on but put whatever you fancy on’ and if you ask me what I fancy for tea the answer was always ‘I’ll eat whatever’ (I really would!).
But there are some innate things I like to be in control of. My health, my career, my future. So when I was told I had two options regarding my health - ride out your illness in one final clinical trial (when the last 3 medication attempts failed to help me) which may or may not work; thus, risking another flare of my disease which could result in catastrophic consequences; or to undergo 3 major surgeries, have my big intestine totally removed and live with a colostomy bag for 6 months, and be cured, a seemingly difficult decision was an easy one for me to make. Surgery.
I was not willing to wait and see. To cross my fingers. I had the opportunity to fight, take control, and I was going to take it.
Regret is a scarier thing than change, and a few days after my op, looking at my scars, and Betty, the name I had given my bag (it’s easier to talk to your boyfriend of 6months about Betty than your colostomy bag…) I was worried I regretted my decision. Shit. What have I done. I’m in agony. I have a bag of poop on my stomach. I have to do this again. Twice. What if that clinical trial drug had worked?
A few days later, my anaesthetist came to visit me. She showed me a picture of my big intestine which they had removed and compared it to a healthy one. All I can say is that it looked like a couple of wild dogs had had a go at it. It was also and unhealthy yellow and white colour, and without ever knowing my fears she announced ‘you absolutely made the right decision. One more flare.. And bang. You would have perforated.’
I contemplated this. If the trial had worked, and sent me into remission, it is not a cure. There is still the chance of a flare at any moment, and for me therefore, a chance of a perforation which could result in septicaemia, loss of other organs, infertility, and the prospect of Betty forever, no reversal. I did it. I genuinely felt like I had beaten time! Amazing!
I’m writing this a week on from my surgery. I’m home but still in pain, and yes I know I made the right decision but I still had a little cry this morning. Betty is a big thing to take on. Even for 6months. But I also red this morning a girl, my age, on a forum begging someone to suggest a trial or drug for her as she had been told surgery was her next option and she would absolutely refuse. That scared me. I though if people with UC who are seeing medication fail them could see surgery as a curative option, not a devastating consequence, that’s a positive change of perspective.
I will post through my next 7/8 months of recoveries and operations, and share anything and everything that may help even just one.
I was let out of hospital on the 50th anniversary of Churchills death (to be fair I was sick of hearing about it on my 3 hour car journey home…) and so in his ever so eloquent words - If you’re going through hell, keep going.