I was diagnosed with bowel cancer on Tuesday, horrified at the thought that I might have to have a colostomy bag, anyone have any experience/advice regarding this?
Hello [@Loustar42] . I've come rather late to this conversation thread but just wondering how you were getting on and whether you've undergone surgery or not yet. I had the same diagnosis back in 2017 and have just been signed-off after the 5-year follow-up period with the all clear. I, too, had a very low-positioned tumour and, also too, recoiled at the thought of a bag.
Well, five years on, I have a permanent stoma and I don't really give it a second thought. As [@Markit] and [@Sophie1997] have implied, it just becomes part of my daily life and let's me live my life. I can still fart and poo for England - it's just that my bum is now on my tum. :happy:
Hi Lou sorry to hear about this. Ive got stage 4 bowel cancer tumour in colon and metastasis on my liver. I had a stoma bag fitted end of Jan.
While in hospital it was horrific obviously you are on so many fluids its just like a bag of fluid hanging off you in a bag thats not fun. You have no idea how to change it yourself on top of everything else you are dealing with so was quite daunting and then you are having to rely on nurses to change it for you which isnt the nicest of things for either of you.
The stoma team wont let you go until you show you can change it yourself. Its not too bad once you get the hang of it I can probably change it now in 20 seconds.
Once home it was still watery and I had a couple of accidents where it would leak while in bed not nice at 2 in the morning and having to strip a bed etc while in pain. My problem I had is where the wound was it was like a gully so fluid would run down that and leak but the stoma team gave me a special powder that helped it heal and creative tape stopped it leaking again.
It does get very annoying at times but you just need to remember its keeping you going. Im really hoping they can operate at some point and reverse it. I have actually had what looks like bits of tumour and old blood coming out of my bottom and the specialist said is a good sign its breaking up.
Tumour in colon has shrunk by 50% and on last scan metastasis which there were 8 have all shrunk 2 of them were 4mm and 3.6mm and are both now under 1mm.
I have another CT scan today. If you need to chat or anything let me know been going through this 8 months so quite experienced now.
