At last, answers and a plan.
I last talked – openly and frankly – about my current predicament back at the end of November; re my rectal stump. Since then, we’ve had some improvement with its produce but it’s still a massive pain in the butt; metaphorical and literal. But we have had some appointments come through and we are now at Stage Three of the process.
This being; I actually signed my surgery paperwork this week.
I had known about my surgical appointment since my GI appointment in mid December – which in actual fact, was only a run down of my Vedolizumab funding and running some more and very detailed liver tests. It was not a consultant but a registrar; another face to add the variety of faces I have seen for my IBD in the last two years being in Peterborough. It was concluded that whilst Vedolizumab was working well and accepted that I would continue on it for another year, I needed to get my liver in check. He blamed some of this on my weight – calling me ‘obese’ if we go by BMI, fair enough but still – and the rest on my autoimmune condition. There seemed to be a lack of compassion towards me; not sure if this was because he was slightly out of sorts on the day – his clinic was running almost an hour behind and I was second on the list for the day – or because I am an experienced patient but I have yet to see two doctors on two consecutive occasions, bar my IBD nurses.
My liver blood work wasn’t done right away – I was working over Christmas and not well enough to attend the care centre for phlebotomy until my pre-infusion bloods were due. So, it wasn’t until my Heptology appointment last week did we have a better plan for my liver. I had imagined my liver might have an impact on my surgery and possibly would need to be moving toward being resolved prior to this happening, but timescales are not set in stone so we have some flexibility to work with. I now need to have a Liver Biopsy done – the consultant does not have a concrete diagnosis for me because no test we have done in the last year – even the repeat ones – have been able to pinpoint exactly why my bloods are still raised. I decided not to look into this procedure because I needed to focus my mind on the surgery consult.
So I see the top IBD Gastro surgeon and it is very clear that my desire to want this surgery gives him some indication to my predicament. This year alone – the first two weeks – I’ve had several days off work because my back / pelvis is too painful to walk. I’ve had to dose myself up on so many painkillers, I had to request them earlier than planned. I’m taking maximum doses of them so that I feel comfortable. They have side effects and whilst I know they help me, I could do without them, to be honest. After a small exemption of my abdomen, stoma site and my back passage, we discuss the surgery.
This will be a Proctectomy for anyone not sure. This is the open surgery to remove my rectal stump and anal passage; effectively sealing shut my butt. It is colloquially known as a ‘Barbie Butt’ for females. He explained how this would mean going through my existing surgical scar and removing the stump from the inside and closing my anal passage to be effectively a wound. He would not touch my stoma or any other bowel whilst in there.
We discussed risks – bleeding, reoccurrence of IBD from bowel manipulation, infection of the bowel and wound – front and back – as well as some associated risk for possibly heart and lung issues from surgery itself. Whilst scary and very real; they are associated with all major surgeries and have to be explained as part of the process. Once I had accepted these, he got out the Patient Declaration Form and we agreed consent.
I had not expected to sign up there and then. That left me feeling shocked but in a good way – no waiting around. I know deep down that whilst I feel scared on the surface, I need this surgery for some return of my quality of life. And as it removes my stump and should remove my discharge and urgency issues, it should hopefully reduce my pain. This for me, is the big one, but it is also the one that might take the longest to resolve. However, I have the utmost confidence in him and his work. He comes very highly recommended and I am very pleased.
Now, we wait.
We wait for March before a date. I am hopefully my liver biopsy is done before then – typical wait for that procedure is 6-8 weeks at the moment – and surgery can follow in behind that.
I have my next infusion date too – that is now in seven weeks time, so mid March looks busy for me.
Until then, I have to get my work schedule and hours amended so that I can get on an even footing with balancing work and health. At the moment, my health is taking over, despite it being a priority and my work is suffering. I would like to get this resolved sooner rather than later because this increases my anxiety. Talking about everything helps but at some points, ignoring it all and being ‘normal’ has helped too.
This year, I promised myself to work on balance.
I hope this is part of that balance.
Do you have any questions or queries? Or just want to share your own experiences? You can leave me a reply here or leave comments via my social media accounts – on Twitter, find my blog page on Facebook and over on Instagram