Stoma Life - Awsome Life :)

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[Ana & Alex]
Posts: 96
Joined: Tue Feb 14, 2017 5:14 pm
Location: Austria

Stoma Life - Awsome Life :)

Postby [Ana & Alex] » Fri Dec 15, 2017 3:30 pm

Dear Colon Clubbers,

After acompanying silently the frustrations and pains of many of you, who are suffering from LARS and poor quality of life - I decided to give you my input about the thing so many dread: a life with a permanent ostomy!

From the beginning I must say I had a huge advantage: beeing a nurse who feels comfortable with body fluids and every other technicality has been a good help. But even if it weren't so I thing I would get used to IT easily still the same.

And it was my call. My surgeons wanted to build me a neo rectum or do a straight anastomosis or j-pouch, depending what they would find during my surgery, but I refused and signed an informed consent stating that I wanted a perm colostomy from the get go. That helped as well, I think - and I am humoungously proud of myself for that.

My rectum was radiated and I was having a lot of pain and clustering still before the surgery. And my tumour was 4 cm from the anal verge - so after reading a couple of studies, I knew that the probability of having major LARS for God knows how long was between 60 an 90%.

So it as a no thanks for me.

That, and the fact that in the short time I worked in the OR I had seen a couple of anastomosis going wrong, fistula and abscess creeping on, stenosis building up - so hell no, no THANKS for me.

I wouldn't risk a second operation as well, knowing the risks of it and knowing that with each operation the imunnsystem takes a beating. Knowing that new adhesions can form and the risks of infection and.. and.. And... I have a small daughter to whom I own to try as hard as I can - and that means taking the less risks as possible and go as radical as it gets.

So.. as someone has said here in the forum. You have one chance to get this right - and that was my mindset.

Thanks to my decisions then went really radical in. My tumour was 4 cm but they ended up cutting 25 cm out. Every piece of bowl that was damaged from the radiation was excised and the tumour had super clean margins.

Living with a colostomy after surgery had it's ups and downs. Mainly because of chemo, my bowl function was erratic and unpredictable and made me question my decision a couple of times. But I know that that wasn't my normal and I had to be patient until I finished therapy, to understand what and how would be my life afterwards.

And cancer teaches you patience.. big time!

Since November I started irrigating and I am SO pleased. I feel so clean, so well, so regular. It has been only a month, but I don't carry supplies anywhere anymore, I dress what I want, I eat what I want, I feel normal!
I can spent my days outside without thinking about my bowls one single time. I only need 30 minutes and a pint of water and I'm good to go until the next morning.

Movies, meetings that go on for the whole day, spontaneous sexy moments with my husband... everything is as before - except I have a 8 cm patch in my belly.

So for those of you who say you want to go back to who you were....

And for those of you who hate the bag: I don't even wear one anymore :D free like a bird :)

And I still have a beatifull little belly that my husband loves - only with three little scares and a patch with a smiley to match with my good spirits for the everyday new normal so good life!

So don't dismissed something you don't know because you are afraid of it. Make the best of what you have a risk making a decision that gives you the best chances and best quality of life...

All the best on your individual paths..

Lots of love,
Ana
Dx @ 29 yo. Mum (2 y.o.) & Wife

12/2016: Rectal AdenoCa G2. CEA 4.3. RAS Wild. MSS. IIIB.
01 - 03/2017: 28 RTx + CHT 2,5 g/d Capecit.
03 - 06/2017: Suplemments and Cimetidine.
05/2017: TME/TAMIS + permanent Colostomy CEA 0.5
05/2017: ypT2N2aM0 (4/15), good cCR, limited pCR
06 - 8/2017: 4x CapOx 3,5 g/d (2x Oxi reduced to 80%)
09 -11/2017: 3x Capecit. monotherapy 4g/d
12/2017: Aspirin, Vit. D3, Curcumin, Multivitamin.

User avatar
susie0915
Posts: 945
Joined: Wed Aug 02, 2017 8:17 am
Facebook Username: Susan DeGrazia Hostetter
Location: Michigan

Re: Stoma Life - Awsome Life :)

Postby susie0915 » Fri Dec 15, 2017 3:35 pm

This is how I feel doing daily enemas. 30 minutes and I'm done until the next morning. No immodium, I can eat without worry and have gained some of the weight back that I lost. I'm so glad you are happy and feel you have quality of life. I have a friend who irrigates is colostomy as well. You sound very happy.
58 yrs old Dx @ 55
5/15 DX T3N0MO
6/15 5 wks chemo/rad
7/15 sigmoidoscopy/only scar tissue left
8/15 PET scan NED
9/15 LAR
0/24 nodes
10/15 blockage. surgery,early ileo rev, c-diff inf :(
12/15 6 rds of xelox
5/16 CT lung scarring/inflammation
9/16 clear colonoscopy
4/17 C 4mm lung nod
10/17 pel/abd CT NED
11/17 CEA<.5
1/18 CT/Lung no change in 4mm nodule
5/18 CEA<.5, CT pel/abd/lung NED
11/18 CEA .6
5/19 CT NED, CEA <.5
10/19 Clear colonscopy
11/19 CEA <.5

User avatar
Robino1
Posts: 463
Joined: Fri Aug 11, 2017 12:09 pm
Facebook Username: Robin.lawthers
Location: Florida

Re: Stoma Life - Awsome Life :)

Postby Robino1 » Fri Dec 15, 2017 4:03 pm

It is wonderful that you found what works so well for you! We all hope to find our path. Congrats! Enjoy your new 'normal' :D
At 54 2014 1st colonoscopy colon cancer detect
Colon resect margins clear. No chemo Stage II
2017
Distend abd, pain in intestines.
CT scan seeding & Ascites
Lap diag - cancer on the omentum
CEA 217; 219
FOLFOX started 6/17
CEA 202
8/29/17 CT melting of tumor.
Latest CT scan shows 2 new tumors and return of ascites.
CEA: (2017)9/30 -109; 10/12 -99.1; 11/4 -90.7; 11/30 -70.7; 12/14 -83.4; (2018)1/4 -73.3; 2/1-84.2; 89.2; 89.8; 88.5; 81.8: 93.5; 107; 119
BRAF V600e

User avatar
Atoq
Posts: 412
Joined: Wed Oct 25, 2017 9:31 am

Re: Stoma Life - Awsome Life :)

Postby Atoq » Fri Dec 15, 2017 4:56 pm

So nice that you did the right choice, I have now a temporary colostomy and I understand that it is not a big deal, just back from a party and I was operated 10 days ago (for emergency blockage). However, I don’t know if I would have the guts to make your choice, my tumor is 5 cm from av and quite large, but the original plan was temporary ileo and reversal, if radiation and chemo will do their job. We will see...I did not consider the extra surgery risk because I thought reversal was not so bad as lower resection.


Claudia
1972, 2 kids
Dx rectal cancer 10.2017
T3N2aMX (met left lung 8 mm)
Lynch neg
CEA 1.8
Neoadjuvant chemoradio Xeloda + 25x2 Gy
05.12.17 laparotomic surg. for blockage, colostomy
25.01.18 laparotomic lar, hysterectomy, ileostomy
05.03.18 core needle lung biopsy
07.05.18 CAT scan, lung met 11 mm
04.06.18 ileo reversal
26.06.18 wedge VATS
24.08.18, 31.02.19 CAT scan
12.09.18, 06.02.19 scope, CEA 1.6
19.11.18 scope
20.08.19 CAT, eco
13.09.19 scope, CEA 1.2
18.03.20 CAT, eco, scope, NED
29.11.20 CAT, NED
2023 NED

MissMolly
Posts: 645
Joined: Wed Jun 03, 2015 4:33 pm
Location: Portland, Ore

Re: Stoma Life - Awsome Life :)

Postby MissMolly » Fri Dec 15, 2017 5:46 pm

Anna:
You have my utmost of respect for the choices that you made in coming to a permanent colostomy.

You will be a valuable resource for forum members faced with the prospect of an ostomy - bringing a sorely needed real life and day-to-day perspective.

I have been sharing space on my abdomen with a stoma (end ileostomy) for 5 years. I can honestly say that there is a good quality of life with a stoma.

It is heartwarming to see you doing so well. May your holiday be one of genuine happiness and joy.
- 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.

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

Re: Stoma Life - Awsome Life :)

Postby BethD » Sun Dec 17, 2017 10:08 pm

Thank you Ana,
I appreciate your post. I am looking for more information as I am preparing for my surgery in January 2018 and a permanent colostomy.

I just met with my surgeon and the news was a surprise.

I am glad to have found this support forum.

all the best,
BethD
42
Dx: Feb 2017 RC 2 cm from AV
Stage 3a
Laparascopic with colostomy
Radiation Oct/Nov 2017
Chemotherapy

User avatar
Shana
Posts: 401
Joined: Sun Jul 30, 2017 9:45 pm
Location: Sonoma, CA

Re: Stoma Life - Awsome Life :)

Postby Shana » Tue Dec 19, 2017 12:56 am

[Ana & Alex] wrote:Dear Colon Clubbers,

After acompanying silently the frustrations and pains of many of you, who are suffering from LARS and poor quality of life - I decided to give you my input about the thing so many dread: a life with a permanent ostomy!

From the beginning I must say I had a huge advantage: beeing a nurse who feels comfortable with body fluids and every other technicality has been a good help. But even if it weren't so I thing I would get used to IT easily still the same.

And it was my call. My surgeons wanted to build me a neo rectum or do a straight anastomosis or j-pouch, depending what they would find during my surgery, but I refused and signed an informed consent stating that I wanted a perm colostomy from the get go. That helped as well, I think - and I am humoungously proud of myself for that.

My rectum was radiated and I was having a lot of pain and clustering still before the surgery. And my tumour was 4 cm from the anal verge - so after reading a couple of studies, I knew that the probability of having major LARS for God knows how long was between 60 an 90%.

So it as a no thanks for me.

That, and the fact that in the short time I worked in the OR I had seen a couple of anastomosis going wrong, fistula and abscess creeping on, stenosis building up - so hell no, no THANKS for me.

I wouldn't risk a second operation as well, knowing the risks of it and knowing that with each operation the imunnsystem takes a beating. Knowing that new adhesions can form and the risks of infection and.. and.. And... I have a small daughter to whom I own to try as hard as I can - and that means taking the less risks as possible and go as radical as it gets.

So.. as someone has said here in the forum. You have one chance to get this right - and that was my mindset.

Thanks to my decisions then went really radical in. My tumour was 4 cm but they ended up cutting 25 cm out. Every piece of bowl that was damaged from the radiation was excised and the tumour had super clean margins.

Living with a colostomy after surgery had it's ups and downs. Mainly because of chemo, my bowl function was erratic and unpredictable and made me question my decision a couple of times. But I know that that wasn't my normal and I had to be patient until I finished therapy, to understand what and how would be my life afterwards.

And cancer teaches you patience.. big time!

Since November I started irrigating and I am SO pleased. I feel so clean, so well, so regular. It has been only a month, but I don't carry supplies anywhere anymore, I dress what I want, I eat what I want, I feel normal!
I can spent my days outside without thinking about my bowls one single time. I only need 30 minutes and a pint of water and I'm good to go until the next morning.

Movies, meetings that go on for the whole day, spontaneous sexy moments with my husband... everything is as before - except I have a 8 cm patch in my belly.

So for those of you who say you want to go back to who you were....

And for those of you who hate the bag: I don't even wear one anymore :D free like a bird :)

And I still have a beatifull little belly that my husband loves - only with three little scares and a patch with a smiley to match with my good spirits for the everyday new normal so good life!

So don't dismissed something you don't know because you are afraid of it. Make the best of what you have a risk making a decision that gives you the best chances and best quality of life...

All the best on your individual paths..

Lots of love,
Ana



Ana,

Thank you for your post, so enlightening to me and I am sure many others on the forum.

Were you able to start irrigation during chemo or did you have to wait until you were done? I would love to try irrigation but I'm not sure that it is even possible with the side effects from ongoing chemo.

Happy to hear your story and that you made the right choice for you and your family!

Enjoy the holidays and New year :D

Shana
DX - 12/16
MSS - KRAS wild
Well-differentiated adenocarcinoma at splenic flexure
Stage IV CC with liver mets
5FU - Failed twice - 1/17 and 3/17
Irinotecan + Cetuximab: 8/17
Irinotecan and Erbitux ran it's course. CEA rising
Primary tumor invaded tail of pancreas and spleen. Liver mets major concern
Y-90 radioembolization on 9/17/18, liver enzyymes have dropped. 10 Radiation treatments to primary tumor completed too. CT scan Nov to assess overall situation...

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

Re: Stoma Life - Awsome Life :)

Postby Lee » Thu Dec 21, 2017 11:23 am

I too have a permanent colostomy, my choice. And it did give me my life back. Radiation destroyed 2/3 of my rectal muscles, thus I was tied to toilet for hours anytime I ate. I learned what a colostomy was prior to my surgery and knew that was my path. I gave my surgeon carte blanc to take all she wanted, just get all the cancer. I believe she succeeded. I will be celebrate 14 yrs next year. My bag does not hold me back.

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!

ppanamared
Posts: 12
Joined: Wed Jun 28, 2017 5:47 pm

Re: Stoma Life - Awsome Life :)

Postby ppanamared » Fri Dec 22, 2017 7:05 pm

After 20+ years of untreated Crohns, oh yeah i love my stoma haha. If you cant travel where you want or go out and not worry about bathrooms, seriously think about it. No one sees it, knows about it, smells it, etc. Gotta live life even if a small bag attached to you, life could be much worse. Wish i would have had the option years ago.


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