Need advice on colostomy

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aam7.00
Posts: 14
Joined: Tue Dec 17, 2019 10:44 am

Need advice on colostomy

Postby aam7.00 » Sun Jun 28, 2020 3:58 am

Guys I'm struggling major LARS episode since my Anterior resection 3months ago. None of the things like water enema etc worked
Moreover , I keep having small.bowel obstruction, and I'm going through one right now and a surgery is scheduled.

My Lars is so bad that I've lost 15 kilos
I sat in the tumor board and we decided to go for permanent ostomy as none of the remedies have worked for me. Tenesmus, diarrhoea, incontinence, clustering, you name it and I'm suffering everyday.

What I would like to know is if barbie butt would be a better option ? Because if I keep the rectum, continuous mucos discharge from the rectum will make my life hell

PS: ever since my sbo I am under TPN because they want to wait for another week and want me to gain 2-3 kilos weight.
M 33 smoker
Diagnosed with rectosigmoid cancer
MRI & CT SCAN- suggests regional lymph node metastasis
11\5\2019 to 12\12\2019 - 28 sessions (fractions) of Radiation therapy with Capecitabine

Lee
Posts: 6207
Joined: Sun Apr 16, 2006 4:09 pm

Re: Need advice on colostomy

Postby Lee » Sun Jun 28, 2020 11:03 am

I have a Barbie butt. Best decision I ever made. Radiation destroyed most of my rectal muscles, thus I was tied to the toilet for hours anytime I ate. I don't have any issues and would recommend it. It will give you your life back, it just may take a few months to recover.

Good luck,

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!

texazgal
Posts: 161
Joined: Fri Sep 28, 2007 4:40 pm
Location: central Texas

Re: Need advice on colostomy

Postby texazgal » Tue Jul 07, 2020 12:57 pm

I also agree with Lee, get the anus sewn up. My surgeons did mine at the time of colectomy, and didn't tell me about it. Don't know if I would have agreed to it had I known, but after all the issues people have with leakage and smell, this is the way to go. Recovery was long and rather painful. You'll avoid hard seats and sit kinda on one side for some months. (Don't use a donut pillow). Good luck and better health to you!
DX rectal cancer Aug 04
Surgery Sept 04, perm ostomy, "BarbieButt" Sept 23, 04.
June 2019 stage 3 esophageal cancer
Aug. 2019 28 radiations, 5 chemo
Nov. PET shows original tumor and mets resolved, 2 new mets in liver and bone.
May 2020 port installed, started Folfox hope to do 12 rounds, cure not expected
Keytruda April 2021 8 rounds
scan showed small growth in tumors
Paclitaxol started summer 2021.
Scan July 30, 2021 showed small decrease in size of tumors in liver and bone

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

Re: Need advice on colostomy

Postby Rikimaroo » Mon Jul 13, 2020 10:07 am

I didn't get the barbie butt and I have mucus discharge. I regret not doing it. Permanent Colostomy has given me my life back, LARS was horrible I dealt with it for 1 year and I couldn't do it anymore. I think doing the full APR is the right thing. I don't know why I decided not to do the barbie butt, I got nervous when he mentioned it and wondered if I would ever go back, like have the option to poop the normal way again, so I decided against it. Now it's an annoyance I rather not have, but honestly its not the biggest deal. If I had to do it over again I would get it sewn up.
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.

NHMike
Posts: 2555
Joined: Fri Jul 21, 2017 3:43 am

Re: Need advice on colostomy

Postby NHMike » Wed Aug 05, 2020 2:30 pm

I know how you feel - I use fasting, nopalina (supplement), slippery elm (supplement) and exercise to try to make things better but I sometimes have these bad days that I'm sure you're familiar with. I have put aside the colostomy option as there are some things that I like to do that may not be easy or possible with one.
6/17: ER rectal bleeding; Colonoscopy
7/17: 3B rectal. T3N1bM0. 5.2 4.5 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/17-9/17: Xeloda radiation
7/5: CEA 2.7; 8/16: 1.9; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8, 2/12 1.2
MSS, KRAS G12D
10/17: 2.7 2.2 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/17: LAR, Temp Ileostomy, Path Complete Response
CapeOx (8) 12/17-6/18
7/18: Reversal, Port Removal
2/19: Clean CT


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