Today I spent a lot of time on the phone getting nowhere. The NHS CT scan waiting time list is 3-4 weeks and somehow I’m still not on it?!? I had to pay my GP £120 to fill in an authorisation form for a private scan but chances are I’ll not be covered because of my “pre-existing” problems (35 years of Crohn’s disease). If I do miraculously get accepted then I can have the scan next Thursday (they could’ve done Monday but the authorisation form had to be posted, not emailed, so it won’t be processed in time). I had a wee cry with frustration but pulled myself together as the kids were home.
Anyway, I wondered what happens after the CT. I know there will be a meeting but do I get any input into it? I’m worried because I had sphincter repair surgery 25 years ago (after fistula complications) and I have a lot of scar tissue in the area. I already struggle with the pain of pooing, have to use laxatives daily and a couple of times a week a self catheter system, I also have an SNS implant for continence. It seems like adding radiation burns into the mix could be a nightmare. Will I get the opportunity to say - I think I might need a stoma before we do the treatment? In what circumstances would they do surgery before chemo radiation?
Thanks in advance for any info folks, I’m still in a daze about all this - it doesn’t seem real at all.
Hi Neesy,
I’m really sorry you’re facing all of these obstacles in getting your scan, it must be just elevating your stress levels beyond compare!
Once you’ve had an MRI & CT scan then your team will hold an MDT (multi disciplinary team) meeting where a surgeon, oncologist, radiologist etc., will discuss the findings, agree on a staging & decide on the best course of treatment for you. You wouldn’t generally be part of this meeting but I’m sure all of your previous medical procedures & history will be looked at & taken into consideration when decisions are made.
If it’s decided that a stoma would be the best path then the stoma surgery would take place & once it’s working properly & you’ve healed from this surgery then your treatment would go ahead.
I remember feeling the way you do in the beginning & how unreal the whole scenario felt, I’d never had any health issues prior to this diagnosis & couldn’t get my head around how & why this had happened.
I hope this helps a little & you hear something really soon about your scan.
Nicola
