Just a brief update for those following along - things are slowing settling down, which is good. I’ve done 3 bag changes myself, with only one leak (and I know what I did wrong!). I’m up to 4 Imodium per day, but that’s ok. The output isn’t too bad during the day, but very liquid overnight (which gets me up every few hours) so the nurse has arranged for some gelling sachets for me to try in the bag before bed, along with an extra Imodium.
Just a shout-out for a product which is helping a lot (which I’m not affiliated with in any way!) - the Stealth Belt. I bought it online and if arrived today, and I’m so much more comfortable with the weight/pressure taken off the adhesive seal, and also knowing that if the bag ‘peeks’ out from under my clothes it just looks like black fabric. I don’t think I’ll be taking it off except to shower! I got it in the vertical (Stingray) version so I didn’t have to try to wear an ileo bag sideways, but the horizontal version looks good for colostomies too. Not cheap but worth it.
Male 37; Melbourne, Australia
10/2018 Dx 3.5cm RC adenocarcinoma, 12cm from AV
Mod diff, EMVI+ LVI+ PNI-
3 LN; 4 liver mets
pT3pN1aM1a; Stage IVa. MSS, NRAS (G13R)
CEA: Oct-18= 12; Nov-18= 14, Mar-19= 2.4, Aug-19 <2.0
11/18 - FOLFOX x 6
3/19 - Liver resection
4-5/19 - 25 x pelvic radiation; complete met. response
07/19 - ULAR (robot), temp ileo, 1/27 LN
08/19 - Missed liver spot
08-11/19 - FOLFOX x 1, FOLFOXIRI x 1, FOLFIRI x 5
12/19 - Planned liver resection #2 & (01/20) stoma reversal