Questions for those with a Colostomy

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Rikimaroo
Posts: 436
Joined: Tue Dec 20, 2016 8:48 pm
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.

Riki
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
LAR/Liver Resect 4/2018
Reversal 10/18
CEA highest 500, lowest .8 throughout process, waiting for latest
Recurrence left vesical/pelvic sidewall - 10/7/2019 resect perm bag,
CEA rise Feb/May 3.7, 8.8, 30, Recurrence in Pelvic
CEA 40 right now, but was 57, so folfiri to beat it back down.
Lots of chemo for the past 4 years.

Rock_Robster
Posts: 1027
Joined: Thu Oct 25, 2018 5:27 am
Location: Brisbane, 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,
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

Zod
Posts: 30
Joined: Wed Aug 28, 2019 2:56 pm
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".

Lee
Posts: 6207
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.

Lee
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 - 16 years and counting!


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