Postby Rock_Robster » Mon Aug 05, 2019 10:58 pm
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.
Cheers,
Rob
41M Australia
2018 Dx RC
G2 EMVI LVI, 4 liver mets
pT3N1aM1a Stage IVa MSS NRAS G13R
CEA 14>2>32>16>19>30>140>70
11/18 FOLFOX
3/19 Liver resection
5/19 Pelvic IMRT
7/19 ULAR
8/19 Liver met
8/19 FOLFOX, FOLFOXIRI, FOLFIRI
12/19 Liver resection
NED 2 years
11/21 Liver met, PALN, lung nodules
3/22 PVE, lymphadenectomy, liver SBRT
10/22 PALN SBRT
11/22 Liver mets, peri nodule. Xeloda+Bev
4/23 XELIRI+Bev
9/23 ATRIUM trial
12/23 Modified FOLFIRI+Bev
3/24 VAXINIA (CF33 + hNIS) trial