PERMANENT COLOSTOMY/VS RESTRUCTURE

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Gloriamazz
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PERMANENT COLOSTOMY/VS RESTRUCTURE

Postby Gloriamazz » Thu Jul 19, 2018 9:57 pm

Hi Team, I need your help in this poll.[color=#000000][/color]

I need your opinions with a permanent colostomy VS/ a REVERSAL My tumor is cancerous and as large as a walnut and 1.9 cm away from the Anal verge. Per MRI Report.

If this was your report would you have a restructure or a colostomy.
If you have experience with a colostomy which one do you use and what are the pros and cons of the device.

Endosonographic Finding
A mass was found in the rectum 4 cm from the anal verge per Ultra Sound Report. The mass measures 50 mm in length and 12 mm in width. No evidence suggesting invasion into the musculari propria (Layer 4) without breakthrough in the perirectal fat. No evidence of invasion into the adjacent structure

MRI PELVIS WO/W IVCON-DETAILS
Impression

Anal Neoplasm with Transmural invasion through Anterior-left lateral aspect of in internal anal sphincter into intersphincteric fat.
Lesion contacts the left external anal sphincter complex and posterior wall of vagina' perineal body, but without gross intramuscular tumor signal.
No suspicious Lymphadenopathy
By Mri this would be a T2 No Lesion

My understanding once the Sphincter is involved with the mass it is better to have a colostomy especial with a 1.9 cm Anal Verge on other report is 4 cm away from anal verge.

If I opted for the restructure I would have to have Chemo and Radiation and who knows what other issues could arise. With the colostomy, my surgeon said I would be CANCER FREE.

I WOULD APPRECIATE YOUR HELPING ME UNDERSTAND WHAT THE SPHINCTER INVOLVEMENT IS AND WOULD IT BE WORTH ALL THAT IS I NVOLVED FOR THE REVERSAL.

I AM 73 YEARS OLD NOT LOOKING FOR A RELATIONSHIP. I AM MARRIED. if I WERE 35 MY ATTITUDE WOULD PROBABLY BE DIFFERENT

THANK YOU,
GLORIA
Last edited by Gloriamazz on Sun Jul 22, 2018 6:49 pm, edited 1 time in total.

AppleTree
Posts: 247
Joined: Fri Mar 18, 2016 8:16 am

Re: PERMANENT COLOSTOMY/VS RESTRUCTURE

Postby AppleTree » Fri Jul 20, 2018 6:15 am

I hope you have a board certified colo-rectal surgeon. I never heard of a colostomy being a guarantee not to have cancer anymore!

I would go get a 2nd opinion. It does not sound like your current DR really explained things to you. Or, does your DR have a good nurse who can help You? My oncologist has a very good nurse who has helped me several times during the past months.
Diag Feb 5, 2016 Age 45
3 cm tumor 5 cm from verge
Radiation + Xeloda pills - 3000mg 5x week
3/14 - 4/16 - 25 sessions
Shrank just over 50% L nodes 0/13
Remove rectum with temp Ileo 6/17
Reversal 7/20 due to infection
Acute hepatitis August. Chemo cancelled
June to September 2016 - 58 days in hospital

2017
6/16, MRI shadow in lung
Pet - 6.6mm Met in Upper right lobe
7/30 VAT surgery Mass General/Boston
8/24 port
8/30 - 4/28 Folfox. 12 rounds
2018
June CT shows new lung Mets.
July PET...CLEAR!

User avatar
Atoq
Posts: 324
Joined: Wed Oct 25, 2017 9:31 am

Re: PERMANENT COLOSTOMY/VS RESTRUCTURE

Postby Atoq » Fri Jul 20, 2018 8:33 am

I have had a colostomy for some months and it was easy to adjust. Of course it is also nice now after reversal, but I had radiation and several surgeries which can be quite hard to go through. And there is no guarantee that you will have a good life quality after reversal. So in your case I would go for the colostomy and skip all extra treatments and surgeries.
For me it was never an option, I had to have chemoradiation anyway.

Claudia
45 year old, mother of 2
Dx rectal cancer 10.2017
At least T3N2aMX (suspect metastasis to one lung 8 mm)
Lynch negative
CEA 1.8
Neoadjuvant chemoradiotherapy Xeloda + 25x2 Gy
05.12.17 laparotomic surgery for blockage, colostomy
25.01.18 laparotomic lar, hysterectomy, ileostomy
05.03.18 core needle biopsy of lung, updated to stage IV
07.05.18 CAT scan, lung metastasis 11 mm
04.06.18 ileostomy reversal
26.06.18 wedge VATS surgery
24.08.18 CAT scan, clear
12.09.18 scope, ok. CEA 1.6
19.11.18 clear coloscopy

mhf1986
Posts: 158
Joined: Sat Mar 11, 2017 8:30 pm
Location: near DC

Re: PERMANENT COLOSTOMY/VS RESTRUCTURE

Postby mhf1986 » Sun Jul 22, 2018 1:24 pm

DH has had his colostomy for almost 2 years now. The restructure failed a week after the surgery, resulting in sepsis. Surgeon said the intestines were just too weak to hold but he wanted to give DH a chance at it. I wish we had chosen the ostomy going in because the sepsis delayed treatment by at least a month.

DH goes to work on non-chemo days via the subway and makes sure he has adequate supplies in his briefcase and in the office. The only thing he hasn't done is go in the ocean/pool with his pouch but he was never big on this anyway. We've been to Italy, on a cruise, to Disney, etc. There are websites/blogs we've read to pick up tips/tricks. For example, the pouching system he uses now is not what we were shown in the hospital.

Do ask for other surgical/medical opinions on surgery/treatment. Do not let anyone tell you that an ostomy will slow you down!
Caregiver to DH, dx @ 50, mets to liver/lungs, MSS, wild
9/16 CEA 114, blockage, left hemi, perm. colostomy
11/16 port in, FOLFOX + Avastin
6/17 CEA 15, 5FU + A only due to neuropathy
11/17 CEA 38, CAPOX + A
1/18 CAPOX = hi bilirubin/bad hfs, back to FOLFOX + A
5/18 growth; Vectibex + 75% Irinotecan
7/18 CEA 23, shrinkage
10/18 CEA 28, growth of 2 liver tumors/shrinkage of few and lung nodes
11/18 Lonsurf, looking at spheres, proton, trials
11/19/18 Peace

MissMolly
Posts: 571
Joined: Wed Jun 03, 2015 4:33 pm
Location: Portland, Ore

Re: PERMANENT COLOSTOMY/VS RESTRUCTURE

Postby MissMolly » Sun Jul 22, 2018 2:08 pm

Gloria:
The MRI finding of cancer cell intrusion into the left anal sphincters (internal and external) would be best addressed by a permanent colostomy.

The anal sphincter finding is a “game changer” from other low rectal cancers without anal sphincter involvement.

An attempt at reconnection (with anal sphincter damage) would most likely find you incontinent of stool and needing to wear Depends/adult diapers.

Feel free to visit the UOAA forum and “talk” with other individuals with a permanent colostomy. An ostomy does not preclude a full and engaging life. The ostomy forum group includes a college professor, a Boy Scout troop leader, a swimming coach, a lawyer, an occupational therapist, et. al. People living their lives in a normal manner.

www.uoaa.org
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.

Gloriamazz
Posts: 35
Joined: Thu Jul 12, 2018 1:59 pm
Facebook Username: gloriamazz@ yahoo.com
Location: Ohio
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Re: PERMANENT COLOSTOMY/VS RESTRUCTURE

Postby Gloriamazz » Sun Jul 22, 2018 6:34 pm

ExactlyI agree if the Sphincters were not involved it would be all together different. Of course, I would like a reversal but I accept the colostomy as it would be easier on me and hopefully dont need Radiation.

My family is rasied my girls are in their 40s. I will be fine. Please tell me about the adjustments you have to make mentally and physically for the colostomy. Am i going to feel an ything or just no feeling on the backside. Woud you elect to do the colostomy again given the choice

Thank you

Gloriamazz
Posts: 35
Joined: Thu Jul 12, 2018 1:59 pm
Facebook Username: gloriamazz@ yahoo.com
Location: Ohio
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re: Pain can’t deal with it any more

Postby Gloriamazz » Sun Jul 22, 2018 6:48 pm

Ihave pain that is horrific even the acetemenephine 325 Oxycodone does not take away the pain all the time. Been taking sitz baths. Any suggesstions. I have been dealing with this pain since the 1st week in May.

Dr says surgery 2nd week in August Hopefully need colostomy class too.

Gloriamazz
Posts: 35
Joined: Thu Jul 12, 2018 1:59 pm
Facebook Username: gloriamazz@ yahoo.com
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Re: PERMANENT COLOSTOMY/VS RESTRUCTURE

Postby Gloriamazz » Sun Jul 22, 2018 6:53 pm

What is this paragraph saying. Thank you!
MRI PELVIS WO/W IVCON-DETAILS
Impression

Anal Neoplasm with Transmural invasion through Anterior-left lateral aspect of in internal anal sphincter into intersphincteric fat.
Lesion contacts the left external anal sphincter complex and posterior wall of vagina' perineal body, but without gross intramuscular tumor signal.
No suspicious Lymphadenopathy
By Mri this would be a T2 No Lesion

MissMolly
Posts: 571
Joined: Wed Jun 03, 2015 4:33 pm
Location: Portland, Ore

Re: PERMANENT COLOSTOMY/VS RESTRUCTURE

Postby MissMolly » Sun Jul 22, 2018 10:26 pm

Gloria:
A former colon club member, Belle Piazza, wrote a heartfelt personal essay about her decision to undergo a permanent colostomy due rectal cancer. I mentioned Belle’s 3 part writing, titled “Colostomy Colundrum,” in an earlier post to you.

Belle’s writing is powerful in her first person narrative and would speak to many of the questions and concerns that you have. You can find Belle’s 3 part writing by finding the topic titled “BLOG post Archive” on this first page of the forum. “BLOG post Archive” is the 10th topic down from the top of the topic listings.

Reading Belle’s writings titled “Colostomy Colundrum” will give you personal and unfiltered insights. Belle wrote these blog posts hoping that her writings could help someone just like you.
Take a moment to find and read the 3-part blog post series “Colostomy Colundrum.”
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.

hawkowl
Posts: 118
Joined: Sun Dec 14, 2014 5:29 am
Location: MN/FL

Re: PERMANENT COLOSTOMY/VS RESTRUCTURE

Postby hawkowl » Mon Jul 23, 2018 2:50 am

I also had a very low lesion and opted for a permanent colostomy. It really doesn't slow me down at all, and I am able to travel and enjoy life. I didn't want to risk being tied to a bathroom with LARS or having to limit my diet. I use a convatec natura flange and wear a NuHope belt and can easily go a week or more with no leaks or other issues. I am very happy with my decision
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


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