In fact the TWO dreaded S words.
Surgery and Stoma. Two words which I've avoided for 9 years.. until now. I mean, I've had discussions and was fully aware this time may come, however I never allowed myself to process or accept the fact it would happen to me.
During lockdown I had an awful flare up and was referred for an urgent Colonoscopy, if you've ever had one of these you'll know the 'joys'. Anyway, I never have sedation anymore, I have this weird thing of wanting to be fully alert to see what's happening on the screen, it's my way of seeing it for myself rather than waiting for the doctors follow up letter. This time was totally unbearable and the first time I've ever had to ask them to stop due to pain. I quickly realised that it wasn't good news at all and I was able to see for myself how inflamed my bowels were since my last Colonoscopy in 2019. Naturally, I knew what the next discussion would be and what decisions i'd have to face.. so i was very emotional. Unfortunately the nurse I had looking after me must have missed her training on how to be compassionate and empathetic towards patients as I was greeted with 'Don't get upset, you know, it could be much worse.. like if we told you you'd got Cancer'. Wow, of course I'm fully aware I could be less fortunate and there are much worse illnesses out there then mine, does that mean I can't be upset or feel a bit shit about things from time to time?!
It's coming up to 10 years since I was diagnosed.. a whole bloody decade! I've tried treatment after treatment and some of which my body responded positively too for a short period of time. I've now been told my Colitis is 'Medically Refractory' which means my body isn't responding to the treatment despite being on the right sort of drugs which should send me into remission. This is where I'm at now, I've been told my only route is surgical.. meaning I'd have to have Stoma surgery. It's still my biggest struggle to discuss and comprehend life with a Stoma bag, but there has been days most recently where I've thought how much 'easier' and pain free my life would be. For those who don't know this basically means i'll have my entire colon removed and the end of my small intestine will come through my abdomen which is what the Stoma bag will be fitted to. When I really let myself think about it, it's actually crazy how our bodies can function without such a big organ and that I can casually just have a small part of my insides hanging out! 1 in 4 patients with UC require this surgery.. lucky me!
Over the past month I've met with my nurse specialist, a Stoma nurse and a surgeon to discuss the surgery. This wouldn't have ever happened years ago, I wouldn't ever allow myself to have these discussions and would totally block the idea from my mind.. so in a way I'm proud of myself for just taking this step. The discussion with my nurse specialist was one that we both knew was coming and one that we both know I have tried to avoid at all costs.. she told me I'm so used to 'putting up with symptoms' that I think my way of life and the pain I experience is the norm.
The Stoma nurse gave me a variety of different bags to 'try' along with various information to take home and read. It really is amazing how much information and support there is for Stoma patients now and the ever advancing products to make life as easy as possible. She stuck a bag on my stomach where it would be situated after the surgery.. I didn't however have any adhesive spray to remove it.. so I had no choice to keep it on all day. Again this is a major step for me and something I'd never even consider before. It came with a mixture of emotions, I had to stop and do a food shop on the way home from the hospital and I was so conscious people could see it through my clothes, it was also a major reality check that this could actually become a permanent fixture.
Speaking to various professionals does help put everything into perspective and they obviously have the patients best interests in mind, however it's a life changing decision that effects no one else but me. I was given a few extra drugs to trial, although afterwards the surgeon basically told me that I was on the highest dose of medical treatment and if I was to try anything else it would be like 'being in constant chronic pain and being on the highest dose of opium then hoping paracetamol would work'.
I was given a date for surgery at the beginning of September, i've decided not to go ahead.. for now. I know deep down i'm delaying the inevitable but I need to be 100% sure in my own mind that i've tried everything else possible. I'm in no way shape or form scared of surgery or being in pain.. it's not like my colon is doing me any favours at the moment, it might aswell not be there! 😰 what I am afraid of is the emotional implications of this surgery, our mind can be an awful place and my emotions have already been all over the place since being told I need a Stoma bag, how do you even prepare for life changing surgery?!
The next time I'll be listed for surgery will be around March-April 2021. (unless, it becomes an emergency.. touch wood it doesn't!) I'm going to use these months to try everything I can and put my mind at ease that this is the right step. Part of me is convinced I'm in a bad flare up because of lockdown and all the stresses that came with it (IBD is strongly connected to stress and can cause bad flareups). I'd be absolutely gutted if I had this procedure earlier than I really needed to when my flare up could potentially calm down now that the world is slowly going back to 'normal'. Although I may be clutching at straws, ultimately it is my body and the final decision is mine.
For now i'm researching more, i've found some truly inspirational accounts online and people who have had Stoma surgery and say they would never look back; no more pain, no more drugs with horrendous side effects, no more panicking about finding a toilet urgently.
I guess its another mind over matter scenario, as society tells us its 'abnormal' and 'weird' to have these things, there is a huge stigma that comes with a Stoma. Although, I may be left with no other choice.. If someone told me the ins and outs of living with a chronic illness before I was diagnosed I'd probably say the same thing that I don't want to or can't live a life like that. We learn to adapt and well, life goes on!
This was a difficult post to write and I'm still so scared of what I've got to face but I'm very lucky and grateful that I've got an amazing support network of family and some of my closest friends that make this journey all the more bearable! 💖xx
