Questions for those with a Colostomy

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Location: Florida

Questions for those with a Colostomy

Postby Rikimaroo » Wed Feb 19, 2020 8:26 pm

So it's been about 4 months since I have my colostomy and overall I am happy with it, versus going the old fashion way and dealing with LARs...

Couple questions/suggestions for me.

1. Sometimes my colostomy is super active in the middle of the night, like from 1am to 6am and I can't sleep, I get concerned and keep getting up to clean it, because it never drops down even using lubricant, its a pain, but ok, but hurts my sleep.
2. Is there a way to slow it down from going so much? I know I could take immodium, but I get super nervous of blockage or something, is this safe?

Thats about it. Let me know your thoughts, the most annoying thing is that it just goes through out the day without really have one or two big movements and be done.

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

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

Re: Questions for those with a Colostomy

Postby Rock_Robster » Wed Feb 19, 2020 9:47 pm

Hi Riki, I had an ileostomy but I always took an Imodium before bed so I wasn’t up every 2 hours. Made a big difference. I believe it’s quite safe, but of course check with your surgeon. Most usually want you to wait a couple of weeks after the op before you start taking it so there’s no risk of an ileus.

Good luck,
Male 38; Australia
10/2018 Dx 3.5cm RC adenocarcinoma, 12cm from AV
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.
11/18 FOLFOX x6
3/19 Liver resection
5/19 25x pelvic VMAT radiation; complete metabolic response
07/19 ULAR (robot), temp ileo, 1/27 LN
08/19 Missed a liver spot
08-11/19 FOLFOX x1, FOLFOXIRI x1, FOLFIRI x5
12/19 Liver resection #2
02/20 Ileostomy reversed
03/20 PET & MRI = NED!

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Facebook Username: Zod

Re: Questions for those with a Colostomy

Postby Zod » Sat Feb 22, 2020 4:44 pm

Some people eat marshmallows to modify ileostomy output. Maybe that could also affect colostomy output?

Consider timing of major meals? Do you eat most of your food intake in the evenings? If so, try changing largest meal to breakfast or lunch?

I had to change my sleep position - but only a little - when I had an ileostomy, to keep the bag at safe positions. Maybe can do that to a position(s) where poop will flow down better?

Research "pancaking".

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Joined: Sun Apr 16, 2006 4:09 pm

Re: Questions for those with a Colostomy

Postby Lee » Sat Feb 22, 2020 5:08 pm

Watch you diet. Maybe keep a diary to see if certain food trigger you. Don't know if it's radiation, surgery or chemo, but I can go from "firm" to "liquid" in one bowel movement over the course of a few hours. This has never been a problem prior to my diagnoses, firm to liquid. For me, cheese will bulk me fast. At the other end, salad green will give me the runs.

Hopefully your body is still healing. For me I generally tend to have my bowel movements in the morning or early afternoon. I'm usually done for the day after that.

Here's hoping your high activity output will slow down some.

rectal cancer - April 2004
46 yrs old at diagnoses
stage III C - 6/13 lymph positive
radiation - 6 weeks
surgery - August 2004/hernia repair 2014
permanent colostomy
chemo - FOLFOX
NED - 10 years and counting!

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