CRC Veteran Check-In! LAR Syndrome question

Please feel free to read, share your thoughts, your stories and connect with others!
Rikimaroo
Posts: 317
Joined: Tue Dec 20, 2016 8:48 pm
Location: Florida

Re: CRC Veteran Check-In! LAR Syndrome question

Postby Rikimaroo » Sat Oct 05, 2019 4:28 pm

Lee do you use a stealth belt for your colostomy, or just leave it under your clothes? Also does the bag not come with it's own built in wafer? With the Ileo bag I never had to buy any wafer, just the barrier ring.
RC T3N1M0 12/16
MSS - NRAS Mutation
Chemo Rad, CCR - W&W 5/2017
Recurrence 11/2017
CT Scan 11/2017 Liver Met 5.5cm Stable, Stage IV
Port Scheduled for 12/2017, folfox - avastin 12/2017
LAR/Liver Resect 4/2018
Chemo Finish 8/2018
Reversal 10/18
CEA highest 500, lowest .8 throughout process, waiting for latest
Recurrence left vesical/pelvic sidewall - 10/7/2019 resect perm bag,
FolFiri 11/6 - 5 rounds
CEA rise Feb/May 3.7, 8.8, 30, Recurrence in Pelvic
Maintenance Chemo begin 6/3/20 FolFiri

NHMike
Posts: 2491
Joined: Fri Jul 21, 2017 3:43 am

Re: CRC Veteran Check-In! LAR Syndrome question

Postby NHMike » Sat Oct 05, 2019 4:33 pm

Rikimaroo wrote:Lee do you use a stealth belt for your colostomy, or just leave it under your clothes? Also does the bag not come with it's own built in wafer? With the Ileo bag I never had to buy any wafer, just the barrier ring.


I used two-piece ileostomy solutions. The advantage is that you can take the bag off and put another one on (though in practice I never did this) and you can burp the bag. I don't think that I've ever seen a one-piece ileostomy but I have read about them.
6/17: ER rectal bleeding; Colonoscopy
7/17: 3B rectal. T3N1bM0. 5.2 4.5 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/17-9/17: Xeloda radiation
7/5: CEA 2.7; 8/16: 1.9; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8, 2/12 1.2
MSS, KRAS G12D
10/17: 2.7 2.2 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/17: LAR, Temp Ileostomy, Path Complete Response
CapeOx (8) 12/17-6/18
7/18: Reversal, Port Removal
2/19: Clean CT

Rock_Robster
Posts: 517
Joined: Thu Oct 25, 2018 5:27 am
Location: Melbourne, Australia

Re: CRC Veteran Check-In! LAR Syndrome question

Postby Rock_Robster » Sat Oct 05, 2019 9:21 pm

NHMike wrote:
Rikimaroo wrote:Lee do you use a stealth belt for your colostomy, or just leave it under your clothes? Also does the bag not come with it's own built in wafer? With the Ileo bag I never had to buy any wafer, just the barrier ring.


I used two-piece ileostomy solutions. The advantage is that you can take the bag off and put another one on (though in practice I never did this) and you can burp the bag. I don't think that I've ever seen a one-piece ileostomy but I have read about them.

I use a one-piece ileostomy (Coloplast Sensura Mio drainable); I actually think in a way it makes more sense for an ileo as the rate-determining factor on changes is when the wafer is close to failure, rather than when the bag is full (as it is drainable). To put it another way, I can’t imagine a scenario as an ileostomate where I need a new bag but the wafer/adhesive is still fine. Also I find the one-piece sits flatter without the additional ring seal, and it’s one less potential point of failure.

I also use a Stealth Belt which I find a HUGE benefit in terms of comfort and also discreetness.
38M Australia
10/2018 Dx RC, 12cm high
Mod diff, EMVI+ LVI+. 4 liver mets
pT3N1aM1a Stage IVa. MSS NRAS G13R
CEA: Oct-18= 12; Nov-18= 14, Mar-19= 2.4, Aug-19 <2.0, Mar-20=2.2, May-20=1.9, Jun-20=2.1, Sep-20: 2.1
11/18 FOLFOX x6
3/19 Liver resect
5/19 25x pelvic radiation; complete met. response
07/19 ULAR w ileo, 1/27 LN+
08/19 Found liver spot
08/19 FOLFOX x1, FOLFOXIRI x1, FOLFIRI x5
12/19 Liver resect
02/20 Ileo reversed
03/20 NED (PET+MRI)
06/20 NED (CT+MRI)
07/20 Clear scope
09/20 NED (PET)

User avatar
Phuong
Posts: 1496
Joined: Mon Jun 14, 2010 10:43 pm
Facebook Username: Phuong Ly Gallagher

Re: CRC Veteran Check-In! LAR Syndrome question

Postby Phuong » Tue Oct 08, 2019 8:22 pm

Hey Rob,

Have you tried seeing a physical therapist? I wonder if they can help break up some of the scarring. Scarring has caused some pelvic pain for me, but PT has definitely helped. Might be worth it if you can find a pelvic specialist to work with.

P.s., thanks for the well wishes!
Phuong
http://sonofamotherlessgoat.net/
dx'd Stage III Rectal (T3 N1 M0)
Now Stage IV mCRC

User avatar
Rob in PA
Posts: 2005
Joined: Wed Dec 09, 2009 9:16 pm
Location: Pennsylvania

Re: CRC Veteran Check-In! LAR Syndrome question

Postby Rob in PA » Fri Oct 18, 2019 5:40 am

Phuong wrote:Hey Rob,

Have you tried seeing a physical therapist? I wonder if they can help break up some of the scarring. Scarring has caused some pelvic pain for me, but PT has definitely helped. Might be worth it if you can find a pelvic specialist to work with.

P.s., thanks for the well wishes!


Hey there Phuong,
I have not tried a PT yet, but have been considering it. I will be seeing a neurologist as soon as we can work our schedules out, then, if that doesn't work out, i believe i will talk to a PT . Hope all is well. Sorry i didn't respond sooner, I've been on walkabout for last several weeks :D

Rob
dx 11/07 crc IIIb @ 39
Xelox/Rad/ temp colostomy
LAR/J-pouch/ temp ileo
Folfox-8
Failed reversal
2/09 liver mets; liver resect/ileo reversal
Folfiri/Avastin - 12
2/11 5 lung mets
Folfiri/Avastin 2011
SBRT 3/12
Lung met 5/13/ said NO to more chemo
SBRT 8/13
2 lung mets 5/14, VATS 8/14, NED


Return to “Colon Talk - Colon cancer (colorectal cancer) support forum”



Who is online

Users browsing this forum: Gravelyguy, prs and 11 guests