I thought it was finally time, now I’m over a week post-op, to publish an update post. I’ve been too weak to write this on many days and very fatigued but I’ve finally got something together. I really hoped that I would be saying how well the op went and that recovery was going smoothly, but let’s face it, with my body and my bad luck that was never going to happen…..
Surgery day itself saw the usual stresses that come with having an operation. These were exacerbated by the fact that I was first on the list and told I’d be in the anaesthetic room by 8am, but instead It was announced that there were emergencies which I’d have to be slotted in between. I’d gone through bowel prep, pre-op drinks and fasted, yet come 3pm I was still waiting, with the idea of surgery that day looking increasingly less likely. The surgeon came to me on the ward shortly after, explaining that it wasn’t good news, and what we were told about the emergencies were lies as he’d had an entirely elective list, but instead there wasn’t an ICU bed so the operation couldn’t be done until there was the guarantee of one.
I just broke down. This was the second time that the surgery had been cancelled/postponed, and I just couldn’t take people playing with my life in this way anymore. I am so beholden to so many people due to my ill health and there gets to a point where it’s so frustrating I just can’t cope with it. The surgeon saw me in this state, begging for him to do the surgery no matter what it took – whilst it wouldn’t have been sensible, I even said I’d chance not having an intensive care bed. He calmly told me that he had one more procedure to do; if there was an ICU bed after it he would stay and do my op, and if there wasn’t then I’d have to go home and it be postponed. After some more tears to my Mum, the nurse popped her head around my curtain and said the theatre staff were on their way to collect me; I had an utter mixture of feelings but felt like I didn’t have time to experience any of them! They had a bed and it was finally time for my ileostomy.
My Mum was allowed into the anaesthetic room until I was put to sleep, and then had to play the waiting game for the next 4/5 hours. Once I was awake in recovery and Stewie (the stoma) had entered the family, all I wanted was for my mum to be able to come in so she knew I was okay as I couldn’t even imagine how awful the wait must have been. My pain was excruciating so once that was under control with copious amounts of morphine and I was thought to have been stable, my Mum came in. Stewie met his Grandma, my Dad and my darling Jack were waiting outside and we were just leaving for The Critical Care Unit, when I had my first crash call.
Initially it was thought that it was just a normal fainting episode, but when all the machines started bleeping and a further look was taken, it was discovered that I’d fallen unconscious. I was told my chest was entirely rigid, my lips were blue and drs from all directions ran over to my bedside as my mum was evacuated from the room in what she called the scariest moment of her life. Extra lines were put in in my feet, needles were pricked, meds were administered and bloods were taken as the doctors came to the conclusion that the safest option would be for me to be intubated. Just as the first tube was inserted into my throat I woke up and eventually once declared stable again, my Mum was allowed back in.
On Critical Care I had a 1:1 Nurse, and these crash calls continued, as unfortunately, they still do now. The worst part for me is that my family members have experienced them which must be so traumatising, but it’s also worrying that the root of them hasn’t yet been found. My faints have also been terrible, meaning I’m unable to even get myself into my wheelchair and so am ultimately bed bound and have been for the last 10 days. After five days in Critical Care, I’ve been moved to a surgical gastroenterological ward which is where I remain and expect to remain for at least the foreseeable future.
However in addition to the fainting and crash calls, recovery from the surgery hasn’t been otherwise straight forward either. During my first visit from the stoma nurses, it was noted that my stoma wasn’t as prominent as expected, particularly as it should shrink as the swelling from the operation goes down. It’s now been found to be retracting, and is thought that a mixture of my EDS and scarring from my Crohn’s Disease is causing this to happen. We won’t know for a while whether I’ll require revisional surgery as we’ve got to allow this to settle, but at the moment we are using convex bags, ‘doughnuts’ around the stoma itself and additional seals to try to create a good fit of the bag and prevent leaks.
Another issue I’ve encountered is that many of my medications have been going through to my bag whole. The fact that I would now have a fast transit, especially in comparison to before, and so absorption of my medications would be different had never crossed my mind. Numerous of my medications don’t come in other forms and due to not absorbing them I’m suffering a flare of many other symptoms. Those that come in a liquid preparation have been changed to that and we are still trying to work out what to do with many of the others of them.
This is complicated further by the frequent vomiting I have experienced since the operation. I’m fine snacking on naughty foods (crisps, sweets etc), but the second I eat anything with substance I bring it straight back up, and we have tried everything. The foods attempted have included a forkful of potato, dry cracker, chicken, salty chips, plain white rice, chicken goujons, porridge and basically everything else! I implemented strategies such as chewing everything well, having only a small amount and giving myself time between mouthfuls but we’ve had no luck, it’s been so draining and I’ve gone nearly a fortnight now with no ‘proper’ food. There were talks about starting TPN, but with my condition and the way my body works (or doesn’t work most of the time!), my stomach would most probably never be able to process food again. With the nutrition team, I’m on glucose and vitamin drips over the weekend, and I’ll be reviewed on Monday when I’ll most likely need to have an NG tube sited whilst we come up with a more long term plan.
As you can tell, things are far from easy and I’ve had days where I’ve struggled more than I ever expected I would. I’m still on constant oxygen due to significant desaturations and pain is still an issue so I’m still using my Oxycodone PCA until I have a review on Monday. I really mean it when I say I truly am grateful for everyone around me, for the constant love, messages, support, visits, presents and cards which have got me through these extremely difficult weeks; there have been times when I haven’t seen a way forwards and you’ve all helped guide me there.
Please bear with me and keep me in your thoughts and prayers whilst I continue my recovery and adjusting to this huge change in my life. Stewie… we can do this.💪🏼