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 ,
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
