Control

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Dorleen
Posts: 2
Joined: Mon Jan 29, 2018 5:46 pm

Control

Postby Dorleen » Mon Jan 29, 2018 7:30 pm

My husband and I will be going to Alaska in July. I had my break down of my ileostomy in 2007. I realize that it has been awhile but I still have this fear of not having a bathroom around. With that being said I do want to see and do a lot in Alaska. Does anyone have any suggestions for me on how I can get over the fear of not being by a restroom? I’m listening

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susie0915
Posts: 775
Joined: Wed Aug 02, 2017 8:17 am
Facebook Username: Susan DeGrazia Hostetter
Location: Michigan

Re: Control

Postby susie0915 » Mon Jan 29, 2018 8:15 pm

Have you tried doing enemas? I do them daily and gives me 24 hrs bathroom free and only takes about 30 minutes. Many on this forum do them. I do them traveling. I wish I would've been doing them when I took a cruise in August ,2016. I didn't start doing them until a year ago.
58 yrs old Dx @ 55
5/15 DX T3N0MO
6/15 5 wks chemo/rad
7/15 sigmoid/scar tissue left
8/15 Pet scan NED
9/15 LAR
0/24 nodes
10/15 Bowel blockage. surgery,early ileo rev, c-diff inf :(
12/15 6 rds of xelox
5/16 Clear CT lung scarring/inflammation
9/16 clear colonoscopy
4/17 CT 4mm lung nod
7/17 no change lung nod
10/17 Clear pel/abd CT
11/17 CEA<.5
1/18 CT/Lung no change in 4mm nodule
5/18 CEA<.5, clear CT pel/abd/lung nod no change

Basil
Posts: 243
Joined: Thu Mar 16, 2017 12:33 pm

Re: Control

Postby Basil » Mon Jan 29, 2018 9:24 pm

Lotta free space in Alaska. Should be prime grounds for popping a squat in nature whenever the need may occur.
40 y/o male, kids 6&9
Dx 3/16/17, rectal cancer s3,t3,n1,m0
PROSPCT trial (FOLFOX in lieu of chemorad)
FOLFOX 4/5/17 - 6/26/17
LAR 7/31/17, temp ileo
pathological complete response
Adjuvant chemo cancelled (IDEA Study)
Ileo reversed 9/25/17
NED
1 year scans - clear

Dorleen
Posts: 2
Joined: Mon Jan 29, 2018 5:46 pm

Re: Control

Postby Dorleen » Mon Jan 29, 2018 9:26 pm

I have not tried doing enemas. You just by the one in the store? I might have to give that a try. Do you eat anything after you do the enemas?

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Maggie Nell
Posts: 721
Joined: Wed May 27, 2015 1:57 am
Location: Melbourne, Australia

Re: Control

Postby Maggie Nell » Mon Jan 29, 2018 9:38 pm

:lol: :lol:
You're terrible, Basil.
DX April 2015, @ 54
35mm poorly diff. tumour found upon emergency r. hemicolectomy
for ileo-colic intussusception.
Lymph nodes: 0/22
T3 N0 MX

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susie0915
Posts: 775
Joined: Wed Aug 02, 2017 8:17 am
Facebook Username: Susan DeGrazia Hostetter
Location: Michigan

Re: Control

Postby susie0915 » Tue Jan 30, 2018 8:54 am

Dorleen wrote:I have not tried doing enemas. You just by the one in the store? I might have to give that a try. Do you eat anything after you do the enemas?

I ordered an enema bag on amazon. You can also get them at the drug store. I eat whatever I want, that is what is great about it. It empties the lower bowel for the day, and I am good until the next morning when I do it again. If you look up daily enemas in the topic you will find alot of good information. Many on the forum use them for bowel control. It really eliminates the clustering and gives you a better quality of life. It can be a little awkward to do at first, but if you keep practice becomes pretty routine and does not take much time. Now would be a good time to try and establish a routine and you'll be an expert by July.
58 yrs old Dx @ 55
5/15 DX T3N0MO
6/15 5 wks chemo/rad
7/15 sigmoid/scar tissue left
8/15 Pet scan NED
9/15 LAR
0/24 nodes
10/15 Bowel blockage. surgery,early ileo rev, c-diff inf :(
12/15 6 rds of xelox
5/16 Clear CT lung scarring/inflammation
9/16 clear colonoscopy
4/17 CT 4mm lung nod
7/17 no change lung nod
10/17 Clear pel/abd CT
11/17 CEA<.5
1/18 CT/Lung no change in 4mm nodule
5/18 CEA<.5, clear CT pel/abd/lung nod no change

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peanut_8
Posts: 2222
Joined: Sun May 25, 2014 1:31 pm
Location: Capital of Texas

Re: Control

Postby peanut_8 » Tue Jan 30, 2018 9:38 am

Maggie Nell wrote::lol: :lol:
You're terrible, Basil.


terribly awesome :lol:
Terri aka peanut
diagnosed Jan 14, RC stage 2a, age 56
permanent colostomy
MSS
April 14, 28 chemo/rad with Xeloda
June 14 adjuvant Xeloda 6 rounds
currently NED

User avatar
susie0915
Posts: 775
Joined: Wed Aug 02, 2017 8:17 am
Facebook Username: Susan DeGrazia Hostetter
Location: Michigan

Re: Control

Postby susie0915 » Tue Jan 30, 2018 1:27 pm

peanut_8 wrote:
Maggie Nell wrote::lol: :lol:
You're terrible, Basil.


terribly awesome :lol:

So funny.
58 yrs old Dx @ 55
5/15 DX T3N0MO
6/15 5 wks chemo/rad
7/15 sigmoid/scar tissue left
8/15 Pet scan NED
9/15 LAR
0/24 nodes
10/15 Bowel blockage. surgery,early ileo rev, c-diff inf :(
12/15 6 rds of xelox
5/16 Clear CT lung scarring/inflammation
9/16 clear colonoscopy
4/17 CT 4mm lung nod
7/17 no change lung nod
10/17 Clear pel/abd CT
11/17 CEA<.5
1/18 CT/Lung no change in 4mm nodule
5/18 CEA<.5, clear CT pel/abd/lung nod no change

hawkowl
Posts: 100
Joined: Sun Dec 14, 2014 5:29 am
Location: MN/FL

Re: Control

Postby hawkowl » Thu Feb 01, 2018 8:28 pm

Carry along a WAG bag when you are away from facilities. I have traveled all over the world as an ostomate including remote parts of Asia and Africa. No bathroom? No problem :-)

Cleanwaste Wag Bags Toilet Kit Pack of 6 https://www.amazon.com/dp/B01M8MG817/re ... CAbY21VDNX
Dx 12/2014 T3N2MX (iliac nodes) low rectal
12/2014-4/2015: FOLFOX (8 cycles)
4/2015-6/2015: 28 cycles of chemoradiation with xeloda
8/2015: Robotic APR with iliac node dissection; path showed ypT0,ypN0 (complete pathological response).
11/2015 scans clear, CEA 2.1
11/2015 parastomal hernia repair
3/2016 CEA 1.7
10/2017 CEA remains in normal range (1.4), scans stable.
6/2018 CEA still normal.

Totally disabled due to oxaliplatin induced neuropathy and dysautonomia

Swirdfish
Posts: 282
Joined: Sun Jun 19, 2016 3:57 am

Re: Control

Postby Swirdfish » Fri Feb 02, 2018 2:04 am

Immodium and Codiene.. Worked for me on planes and public transport for a good 8 hrs or so.
06/2016 Went in for colonoscopy came out with a tumor. Age 35
12cm from verge at junction. Rectal cancer.
Clinical stage T3 NO MO
Temp illestomy
Completed 5FU and Radiation
LAR surgery planned 13 Oct 2016
Completed ULAR surgery 11-10-2016.
0/22 nodes
pT3 N0 M0 R1
Stage 2A

Pathology reviewed and changed
ypT3 N0 M0 R0

Started folfox 21-11-2016
5-4-17 NED
Reversal 12-4-17


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