Facing a permanent stoma

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Lee
Posts: 5383
Joined: Sun Apr 16, 2006 4:09 pm

Re: Facing a permanent stoma

Postby Lee » Fri Jan 05, 2018 8:52 pm

My stoma in the course of a bowel movement goes from firm stools to liquid stool on a regular bases. And I tend to eat a high fiber diet. Salads will give me the runs faster than anything else. Please understand I went on this journey 13+ years ago, technology has changed/improved since then. Prior to my diagnoses, the only time I had diarrhea was when I was sick, today I can get it almost on a daily bases. I figure between the radiation, surgery and chemo, my plumbing has been for ever changed. One of the biggest reason why I am glad I opted for the stoma/bag.

I knew I few people who wanted to avoided the bag, period! One guy wished he had died vs living with the bag. One of my son's teacher's neighbor opted for hook up vs the bag. Years later she was still tied to the house. Guess she was diagnosed 6 months prior to me, DS's teacher felt I had made the right decision. She really wanted me to talk to this neighbor, butt neighbor did not want it.

I also figure, God designed our plumbing for maximum usage, take some of it away, it's expected to perform 100% with less colon :shock:

For all of those starting this journey, do the research, butt for me, the bag was the right decision. And if your board certified colon rectal surgeon says you might want to consider the bag, you just might want to listen to them. I'm glad I did.

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 - 10 years and counting!

User avatar
Shana
Posts: 186
Joined: Sun Jul 30, 2017 9:45 pm
Location: Sonoma, CA

Re: Facing a permanent stoma

Postby Shana » Fri Jan 05, 2018 9:17 pm

Lee wrote:My stoma in the course of a bowel movement goes from firm stools to liquid stool on a regular bases. And I tend to eat a high fiber diet. Salads will give me the runs faster than anything else. Please understand I went on this journey 13+ years ago, technology has changed/improved since then. Prior to my diagnoses, the only time I had diarrhea was when I was sick, today I can get it almost on a daily bases. I figure between the radiation, surgery and chemo, my plumbing has been for ever changed. One of the biggest reason why I am glad I opted for the stoma/bag.

I knew I few people who wanted to avoided the bag, period! One guy wished he had died vs living with the bag. One of my son's teacher's neighbor opted for hook up vs the bag. Years later she was still tied to the house. Guess she was diagnosed 6 months prior to me, DS's teacher felt I had made the right decision. She really wanted me to talk to this neighbor, butt neighbor did not want it.

I also figure, God designed our plumbing for maximum usage, take some of it away, it's expected to perform 100% with less colon :shock:

For all of those starting this journey, do the research, butt for me, the bag was the right decision. And if your board certified colon rectal surgeon says you might want to consider the bag, you just might want to listen to them. I'm glad I did.

Lee



Lee, your experience is so valuable and I always appreciate what you share with us. My colostomy is technically not permanent since it was to bypass a blockage that is no longer there. Resection is not being considered as yet so I can definitely live with this if it becomes permanent. I think the key word is living and whatever you need to do in order to achieve quality of life! Thanks for being so open about your experience, it's just 7 months for me but it gets easier as time goes on. :)
DX - 12/16
MSS - KRAS wild
Stage IV CC with liver mets
5FU - Failed twice - 1/17 and 3/17
Irinotecan + Cetuximab: 8/17 - 2 wks on, 1 wk off to lessen side effects
CEA 12/17 - 37.8! CEA 1/17 - 33!
CT-Scan 9/1/17. Shrinkage of liver mets (4 measurable) and no bowel blockage
CT=Scan 12/1/17 Shrinkage of liver mets continue, no blockage

Removal of primary tumor and resection still on back burner. Have to be able to be OFF chemo one month prior and one month after surgery and evaluate benefit vs risk.

BethD
Posts: 13
Joined: Sun Dec 17, 2017 8:58 pm

Re: Facing a permanent stoma

Postby BethD » Sun Jan 07, 2018 2:47 pm

Thank you everyone for all of your comments.

I am doing my surgery prep today. By this time tomorrow I should be in the recovery room.

talk to you soon
Beth
42
Dx: Feb 2017 RC 2 cm from AV
Stage 3a
Laparascopic with colostomy
Radiation Oct/Nov 2017
Chemotherapy

User avatar
Shana
Posts: 186
Joined: Sun Jul 30, 2017 9:45 pm
Location: Sonoma, CA

Re: Facing a permanent stoma

Postby Shana » Sun Jan 07, 2018 2:50 pm

BethD wrote:Thank you everyone for all of your comments.

I am doing my surgery prep today. By this time tomorrow I should be in the recovery room.

talk to you soon
Beth


Good luck Beth!

I'll be thinking of you tomorrow when I'm at my appointment at UCSF. Hope you get a room with a great view!
DX - 12/16
MSS - KRAS wild
Stage IV CC with liver mets
5FU - Failed twice - 1/17 and 3/17
Irinotecan + Cetuximab: 8/17 - 2 wks on, 1 wk off to lessen side effects
CEA 12/17 - 37.8! CEA 1/17 - 33!
CT-Scan 9/1/17. Shrinkage of liver mets (4 measurable) and no bowel blockage
CT=Scan 12/1/17 Shrinkage of liver mets continue, no blockage

Removal of primary tumor and resection still on back burner. Have to be able to be OFF chemo one month prior and one month after surgery and evaluate benefit vs risk.

NHMike
Posts: 853
Joined: Fri Jul 21, 2017 3:43 am

Re: Facing a permanent stoma

Postby NHMike » Sun Jan 07, 2018 2:54 pm

Best wishes for a speedy recovery. Focus on the recovery. We can wait.
6/23/17: ER rectal bleeding; Colonoscopy
7/13: Stage 3B rectal. T3N1bM0. 5.2 x 4.5 x 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/31-9/8: Xeloda 3,400 mg/day+radiation
7/5: CEA 2.7; 8/16: 1.9; 9/8: 1.8; 11/30: 0.6; 12/20 1.4
MSS, KRAS G12D
10/6: 2.7 x 2.2 x 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/30: LAR, Temp Ileostomy, Path Complete Response
12/20: Started CapeOx

Lee
Posts: 5383
Joined: Sun Apr 16, 2006 4:09 pm

Re: Facing a permanent stoma

Postby Lee » Sun Jan 07, 2018 2:59 pm

Good luck tomorrow. Remember to walk, walk, walk, those hospital hall.

Post when you can.

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 - 10 years and counting!

Lee
Posts: 5383
Joined: Sun Apr 16, 2006 4:09 pm

Re: Facing a permanent stoma

Postby Lee » Sun Jan 07, 2018 3:00 pm

Shana wrote:Lee, your experience is so valuable and I always appreciate what you share with us. My colostomy is technically not permanent since it was to bypass a blockage that is no longer there. Resection is not being considered as yet so I can definitely live with this if it becomes permanent. I think the key word is living and whatever you need to do in order to achieve quality of life! Thanks for being so open about your experience, it's just 7 months for me but it gets easier as time goes on. :)


Thank you, you made my day :D

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 - 10 years and counting!

Soccermom2boys
Posts: 156
Joined: Tue Nov 10, 2015 10:29 pm

Re: Facing a permanent stoma

Postby Soccermom2boys » Sun Jan 07, 2018 3:48 pm

BethD wrote:Thank you everyone for all of your comments.

I am doing my surgery prep today. By this time tomorrow I should be in the recovery room.

talk to you soon
Beth



Good luck, Beth! The unknown is so much scarier than reality, once you get some time under your belt you’ll be fine and may very well appreciate having an ostomy! Keep us posted how you are doing after surgery! Will have you in my thoughts tomorrow. :D
8/3/15 Went in with a hemorrhoid, came out with a tumor
8/12/15 Biopsy from colonoscopy confirms RC (45 yrs old--zero family history!)
9/21 - 10/29/15 chemorad 28 tx (with Xeloda)
12/17/15 APR with perm colostomy
Pathology report stages me as IIIA (T2N1M0)--1/15 LN detects cancer
2/3/16 chemo port inserted
2/8-6/2/16 8 rounds of Folfox
With these odds, how have I not won the lottery already?!

BethD
Posts: 13
Joined: Sun Dec 17, 2017 8:58 pm

Re: Facing a permanent stoma

Postby BethD » Wed Jan 17, 2018 1:18 pm

My surgery went really well & I am happy to be home!
No sitting for 6 weeks.
You all were right--The colostomy is not so bad afterall.
More details later.

talk to you soon
Beth
42
Dx: Feb 2017 RC 2 cm from AV
Stage 3a
Laparascopic with colostomy
Radiation Oct/Nov 2017
Chemotherapy

User avatar
susie0915
Posts: 648
Joined: Wed Aug 02, 2017 8:17 am
Facebook Username: Susan DeGrazia Hostetter
Location: Michigan

Re: Facing a permanent stoma

Postby susie0915 » Wed Jan 17, 2018 1:54 pm

Glad you are doing well.
58 yrs old Dx @ 55
5/15 DX T3N0MO/ 2A
6/15 5 wks chemo/rad
7/15 sigmoidoscopy/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 onc feels scar tissue
7/17 no change lung nodule
10/17 Clear pel/abd CT
11/17 CEA<.5
1/18 CT/Lung no change in 4mm nodule or scarring/inflammation

Soccermom2boys
Posts: 156
Joined: Tue Nov 10, 2015 10:29 pm

Re: Facing a permanent stoma

Postby Soccermom2boys » Wed Jan 17, 2018 5:38 pm

Yay, good to hear from you and that all is going as well as it can just a week out of surgery! The no sitting is challenging, I lived on my recliner sofa for a good two months after the surgery so that I was not directly sitting on that area while it tried to heal. Get as much walking in as you can, but also listen to your body and take it easy. Thanks for the update! :D
8/3/15 Went in with a hemorrhoid, came out with a tumor
8/12/15 Biopsy from colonoscopy confirms RC (45 yrs old--zero family history!)
9/21 - 10/29/15 chemorad 28 tx (with Xeloda)
12/17/15 APR with perm colostomy
Pathology report stages me as IIIA (T2N1M0)--1/15 LN detects cancer
2/3/16 chemo port inserted
2/8-6/2/16 8 rounds of Folfox
With these odds, how have I not won the lottery already?!

MissMolly
Posts: 455
Joined: Wed Jun 03, 2015 4:33 pm
Location: Portland, Ore

Re: Facing a permanent stoma

Postby MissMolly » Wed Jan 17, 2018 8:07 pm

Beth:
I gather your colostomy Included resection of your anus and anal sphincters and your backend surgically closed. That’s a big surgery.

The 6 week sitting moratorium is to keep the deep and superficial tissues of the lower pelvis free of tension, traction, or pulling forces that would separate or spread the tissues apart. In sitting, the two opposing cheeks of the buttocks separate. This is a “no can do” in the early post-operative weeks. You do not want to assume any position where the two cheeks of the buttocks separate.

Once I was allowed to sit, I was miserable. Healing of the peri-anal wound is a slow process. What helped me the most was a memory foam cushion with a horse-shoe shaped sacral/tail bone cut-out. It equalized the weight distribution in sitting and unweighted my hypersensitive tail bone. I carried this cushion with me as though it was a baby blanket. It was a God-send. The cushion gave me relief where other ideas failed. You might want to plan ahead and consider a memory foam cushion (1” to 1.5 “ height) with a horse-shoe sacral cut out.

Sending you healing wishes in your recovery,
Karen
Dear friend to Bella Piazza, former Colon Club member (NWGirl).
I have a permanent ileostomy and offer advice on living with an ostomy - in loving remembrance of Bella
I am on Palliative Care for broad endocrine failure + Addison's disease + osteonecrosis of both hips/jaw + immunosuppression. I live a simple life due to frail health.


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