The waiting game
Travelled to Stamford this morning to check in with my surgeon following my operation, six weeks and five days ago.
I can hardly believe its the middle of May, let alone comprehend that it’s been that long since my surgery back in late March. I have seen my consultant since being discharge from hospital and we regularly email about my symptoms and progress. Despite that interaction, it’s been a while since I attended an actual hospital appointment.
He does not mince his words but is careful with what he does say. In the same instance he is also kind and a very experienced clinician.
I’ve gotten more comfortable with my IBD team this last year or so – being direct and asking for what I think I need has been really important, it’s something I was actively doing at my old hospital with my previous team – so that also means I can sort of predict or at least anticipate what will be said.
After having an examination of my perianal wound, we discussed progress.
Since my last post about recovery – you can read my ‘One Month Post Op‘ post here – I’ve been waiting for an ‘urgent’ MRI of my pelvis to see if I have any collection of infection in my left buttock – where the drain was removed from, Day Three post op – or anything else in that region. My wound got infected on Easter Sunday and I had an emergency appointment at our hospitals’ AMU for a check over and new antibiotics. They finished last week but still no MRI. Everyone has been chasing and we were still waiting this morning.
The need for the MRI is two-fold –
- A look at any nasty things happening inside, either from the infection or more of the infection lingering.
- Without knowing this outcome, they have halted my Vedolizumab. This was discussed with me prior to my operation – but only as an if I got an infection. Since I have had one and it’s not been completely agreed upon it’s finished, we need to be careful. Vedolizumab is a gut specific immunosuppressant and having it comes with risk – having it could mean the ‘infection’ becomes worse or I pick one up easier. The only saving grace is the fact it is gut specific; if I was having Infliximab – which is a systemic immunosuppressant – they would say no, without any leeway.
While we wait for this MRI to take place, I have to patient and just wait.
And this is frustrating – one of the part of the NHS that really is stretched with is enough time and machines for the capacity it desperately tries to accommodate for.
However, while we do wait, I explained my cause for concern. I am a week overdue for my medication, something which normally doesn’t affect me much but after the trauma of a surgery, then an infection; I can feel the pain creeping back in. The watery output from the stoma has increased, the smell of my more solid output is very familiar to me – it smells like when I was flaring – it smells like my Crohn’s. I know that sounds really generic and probably crazy but smell for me is a strong reminder and strong component of me knowing my own body. Heck, this particular smell haunts my nightmares; when I was really sick before diagnosis, this smell was all around me.
These symptoms, as well as the examination of my perianal wound, has concluded that we play the waiting game but only for so long.
He wants me to monitor my infection symptoms closely, as well as my own IBD symptoms and if they get worse I need to make contact and they will likely schedule a EUA.
If everything just sort of ticks over, we have an appointment in four weeks to check the wound. If there is no improvement made, I will have a EUA.
A EUA is an Examination Under Anaesthetic.
My wound is externally healing very well but there is a cavity below which is slow to heal. The slowness in this cavity is normal and to be expected but it should always be improving. If my external wound heals over and the cavity is still there, it could be a breeding ground for infection.
A EUA is something I would like to avoid but it might be out of my hands. The hope is that the MRI shows nothing too terrible and Vedolizumab goes ahead and things keep on ticking on.
But, that is best case scenario. And yes, that could happen but this niggle feeling inside tells me it won’t be. Partly because my body doesn’t fight fair and also because we don’t know how my body will react to having Vedolizumab without my rectal stump. We don’t know if it will help things out or make it worse. Having Vedolizumab is always a risk, an associated and accepted risk; when I am in good health. When it is not delayed. When I haven’t just had surgery. When I haven’t just had an infection; Clostridium to be specific.
Since my appointment, I have had confirmation of my MRI taking place today.
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