Permanent Colostomy - Quality of Life

Please feel free to read, share your thoughts, your stories and connect with others!
hart2hart
Posts: 796
Joined: Wed Nov 23, 2011 10:46 pm

Permanent Colostomy - Quality of Life

Postby hart2hart » Wed Feb 22, 2012 9:13 pm

All -

Thanks all for chiming-in on my last post (internal sphincter involvement).......Appreciate all of them!
so----- my next question is about quality of life with a colostomy. Besides the fact that is mentally takes time to adjust to
any other downsides to it? Can you eat normally? Go on with your life as usual just with a little different plumbing?
My pete is an architect who loves to cook (aren't I lucky?) .....so eating is a big deal in my household.
Sounds like for you who have the different plumbing now it's not so bad. Plus I've been hearing about irrigation that
liberates you even more. We have been married almost 28 years and I want him to have the best quality of life ever.
Please chime-in again with any and all you have to say......Appreciate it! And Gaelen thanks for all your valued
thoughts, tips and plain ole straight-out tell it like it is!! Here's to another CNYer ---- I'm from Camillus!! xoxo
Pete (hubby) Stage 3 VLRC - 11/11
Chemo/Rad/Ace Surgeon - 11/11 - 4/12
Oxi/Xeloda (Severe Toxicity to OXI) - 5/12 - 6/12
5Fu Only - 8/12 - 2/13
Liver Resection/Hai Pump/Folfiri/FUDR - 10/13 - 5/14
Lung Ablation (MSKCC) - 12/31/2014
Xeloda through 4/2015
NED - 1/2015 - 1/2020
Hai Pump/Port Removed - 1/2020

User avatar
BrownBagger
Posts: 7954
Joined: Fri Jul 24, 2009 2:56 pm
Location: Central NYS

Re: Permanent Colostomy - Quality of Life

Postby BrownBagger » Wed Feb 22, 2012 9:30 pm

People I know with permanent colostomies and ileostomies live perfectly normal lives, along with all that entails. It's something most people find a way to live comfortably with. From Camillus, huh?
Eric, 58
Dx: 3/09, Stage 4 RC
Recurrences: (ongoing, lung, bronchial cavity, ribs)
Major Ops: 6/ RFA: 3 /bronchoscopies: 8
Pelvic radiation: 5 wks. Bronchial radiation—brachytheray: 3 treatments
Chemo Rounds (career):136
Current Chemo Cocktail: Xeloda & Erbitux & Irinotecan biweekly
Current Cocktail; On the Wagon (mostly)
Bicycle miles post-dx 10,477
Motto: Live your life like it's going to be a long one, because it just might, and then you'll be glad you did.

hart2hart
Posts: 796
Joined: Wed Nov 23, 2011 10:46 pm

Re: Permanent Colostomy - Quality of Life

Postby hart2hart » Wed Feb 22, 2012 9:47 pm

Hi - Yes, I'm from Camillus and went to West Genny! -- powerhouse Lacrosse teams!


Please write ya'al"

Julie H.
Hubby Pete (LRC) 11/11
Stamford, CT
Pete (hubby) Stage 3 VLRC - 11/11
Chemo/Rad/Ace Surgeon - 11/11 - 4/12
Oxi/Xeloda (Severe Toxicity to OXI) - 5/12 - 6/12
5Fu Only - 8/12 - 2/13
Liver Resection/Hai Pump/Folfiri/FUDR - 10/13 - 5/14
Lung Ablation (MSKCC) - 12/31/2014
Xeloda through 4/2015
NED - 1/2015 - 1/2020
Hai Pump/Port Removed - 1/2020

User avatar
Stomatrooper
Posts: 488
Joined: Fri Dec 31, 2010 11:56 pm
Location: Auckland New Zealand

Re: Permanent Colostomy - Quality of Life

Postby Stomatrooper » Wed Feb 22, 2012 11:47 pm

Others have made relevant points - I can't add much - only post my experience:

My Takedown was Jan 26 2011 (about the same time as jjlist)

I had internal sphincter involvement which was part cut away.

Things are pretty much OK now - I don't have any real issues even though things are not quite the same.

Other than morning metamucil and eating more fruit than I used to I don't watch my diet - though generally I am more concerned about avoiding constipation than loose bowels - that said, the shorter anal canal and loss of sphincter is noticeable and holding pressure while adequate is not what it used to be.

I came to terms with the bag during the three months that I lived with one and it didn't spoil my quality of life or activities hardly at all - I was always open about having a bad when I met people that I knew (and maybe did not see often) who wanted to talk about what I had been through etc - I felt it important for them to know that people with bags were 'normal' and that there should be no stigma associated (partly because I was horrified when I first realised that I would need one, temporary and possibly permanent) - I was prepared to live with a bag if need be - still pleased to be without it.


Edit - Duh - this was meant to be in your other thread 'internal sphincter....'
Last edited by Stomatrooper on Thu Feb 23, 2012 2:06 am, edited 1 time in total.
John, Diag. 20 5 2010 @55
Rectal, 2cm dia, 3cm from anal verge
T2N0M0
5.5 Wk Chemorad
ULAR Oct 2010
Temp Ileo, infection; blockage; incisional hernia
Takedown Jan 2011
Hernia fix - June 2011
Clean CT 2011; 2012 & 2015
Clean scope May 2013

NWgirl
Posts: 6659
Joined: Sat Feb 02, 2008 3:24 am
Facebook Username: Belle Piazza
Location: Battle Ground, Washington

Re: Permanent Colostomy - Quality of Life

Postby NWgirl » Thu Feb 23, 2012 12:24 am

I've PM'd you before, but I'll speak up again. THANK GOD FOR MY COLOSTOMY!!!!! I lived almost 3 painful years with my ileo take down. For me, it just didn't work. Don't get me wrong - for those who can do this and make it work - awesome. I just didn't fall into that category.

I LOVE my colostomy because it enables me to do ANYTHING I want to - ANYTIME I want to do it. I took the kids to Great Wolf Lodge and went down EVERY slide they had - sat in the jacuzzi, stayed up late in the hotel room with my girl friend eating and drinking. I can cook dinner now without having to run to the bathroom half a dozen times during the preparation. I could go on and on.

I don't regret trying to make my take down work. I had to give it a try and I did - I gave it my all. But it just didn't work. So time for Plan B - permanent colostomy. Move forward and don't look back - life is too short.

I haven't taken on the irrigation thing because honestly, I'm just too lazy to set aside "x" amount of time every day to deal with it. I may try it at some point, but right now I'm so busy on catching up on life, I just don't want to deal with it. I know many people who irrigate and find it very empowering and allows them greater freedom. For me, I'm happy just not having to run to the bathroom 25 X a day.

My quality of life with my colostomy is exceptional. Lets face it, no one WANTS a colostomy. But I know how BAD life can be under other circumstances (i.e. a take down that just didn't work). I still have moments where I sit there and realize 'wow - I'm not having to run to the bathroom - how cool is that?' I remember nights when I went to bed crying and crying in pain and physical exhaustion because I just couldn't make the bowel movements stop. Yes - it was THAT BAD.

I feel I have a unique perspective on the whole issue because I had an ileostomy for a year; I lived with my take down surgery for almost 3 years and now I have a permanent colostomy. I've been on all sides of this thing. So I can truly appreciate what a colostomy can do for quality of life. And I am all about quality of life.
Belle - "Don't Retreat - Reload"DX 10/07 Stage III Rectal
Surgery 11/07; 27 of 38 nodes
Perm Colostomy 8/11
12/10 recurrence lungs & LN's
VATS Jan 2011
Radiation Oct 2013
Chemo for Life
2012 Colondar Model

User avatar
SynD
Posts: 139
Joined: Tue Nov 09, 2010 2:08 pm
Facebook Username: cindy.stanley

Re: Permanent Colostomy - Quality of Life

Postby SynD » Thu Feb 23, 2012 12:50 am

I have had my permanent colostomy since last year. I have had several medical professionals ask if it can be reversed, and when I say "no, it is permanent", they tell me how sorry they are for me. I'm not sorry about it at all. I no longer have to spend time in the bathroom, no longer have unexpected urges, and travelling is now a breeze! :D As far as diet goes, I eat anything and everything. I have cut back on gas-producing foods such as broccoli and beans because unless my bag is fairly fresh, it can fill up with gas which is annoying, but I still eat it if I want it. The appliance is undetectable beneath clothing, and you can exercise, swim, whatever you would normally do. Has it reduced my quality of life? NO! How my colon empties is just different, that's all. There are both advantages and disadvantages, but nothing unmanagable.
Dx Stage IIIb Rectal Ca, T3, N1 - Nov. 8, 2010
5-FU Chemo/Radiation completed 1/14/11
APR with permanent colostomy 3/9/11
8 Rounds of Folfox6 completed 7/20/11
Clear PET 8/22/11 - Praise the Lord!
Age 45 married w/ 3 boys ages 17, 15, 11

Granny
Posts: 345
Joined: Mon Nov 07, 2011 10:12 pm

Re: Permanent Colostomy - Quality of Life

Postby Granny » Thu Feb 23, 2012 8:15 am

I agree with SynD! There are far worse options. It really just becomes a different routine and much less time with bathroom needs.
Granny

boomerskid
Posts: 22
Joined: Fri Sep 30, 2011 8:54 pm

Re: Permanent Colostomy - Quality of Life

Postby boomerskid » Thu Feb 23, 2012 8:22 am

Hi -I normally have been posting on the "Wives of Stage IV..." thread, but saw this. My father had a permanent colostomy in 1988 (yes, 24 years ago). It hasn't stopped him from doing anything, except for one mission trip to Haiti after the earthquake because he was worried about bathroom facilities for his irrigation in the aftermath. Other than that, it's been just a part of who he is -- and he's still here.
Husband Jim - dx Stage IV Rectal cancer 5/11 age 46
Mets to liver, lungs & nodes
KRAS mutant
Folfoxiri-B 6/11-8/11
Attempted liver resection 10/11
Xelox+Avastin+affinitor 11/11-1/12
affinitor+nexavar
SIRT eval scheduled 2/14/12
Died 2/13/12

User avatar
cnorton1960
Posts: 27
Joined: Tue Oct 28, 2008 8:12 am

Re: Permanent Colostomy - Quality of Life

Postby cnorton1960 » Thu Feb 23, 2012 8:27 am

SynD wrote:I have had my permanent colostomy since last year. I have had several medical professionals ask if it can be reversed, and when I say "no, it is permanent", they tell me how sorry they are for me. I'm not sorry about it at all.


The "I'm so sorry" comments about a permanent colostomy or ileostomy may be part of the reason I am holding back. They always make me feel like there's more I should be doing when I know that living with a permanent stoma is something I would have no problem with. While dealing with this fistula, I struggle a lot with that one!
[i][color=#008000][size=85]Diagnosed 6/08
Rad/Chemo 06-09/2008
Surgery 11/08-Stage IIA
Temp Illeostomy-R/V fistula
Tried 5x to fix fistula
Ileostomy rev. 12/2010
2nd ileostomy rev. 12/2011
01/2013-Turnbull Cutait procedure-Healed!
3rd ileostomy rev. 04/18/2013-All is good!

momomx3
Posts: 16
Joined: Thu Sep 15, 2011 9:25 am
Facebook Username: cindyremmert

Re: Permanent Colostomy - Quality of Life

Postby momomx3 » Thu Feb 23, 2012 10:09 am

I want to add my 2 cents in this discussion of the permanent colostomy.

When I met with my surgeon before my 11/10 surgery, I was VERY concerned about having a permanent colostomy. You see, my late grandfather had colon cancer and a permanent colostomy in June 1975. I grew up with him having this "thing" and these contraptions (he irrigated daily for years) in the bathroom that we didn't really discuss. To me, it was definitely an old man thing of which I didn't want any part! After my surgery, my grandfather offered to share some of his supplies with me! (BTW, my grandfather just passed away on 1/12/12 so he lived 36+ years with his colostomy.)

As my surgeon discussed the location of the tumor and the real possibility of a permanent colostomy, I realized that the choices were either have the "bag" (I HATE that term) or not get clean margins and run the greater risk of the cancer returning. At that point, the choice was easy. A permanent colostomy could save my life. My surgeon vowed to do everything he could to prevent the permanent colostomy, but unfortunately, my DH had to make the call while I was in surgery to move forward with the colostomy. (He says that was the hardest thing he has ever had to do!)

Now, here I sit 15 months post-surgery and my life is GREAT! I had chemo and radiation following the surgery. Fortunately for me, I had the colostomy as I dealt with skin burning issues from the radiation. I never knew I would be so happy to have an alternate way for removing waste from my body! The idea of pooping with the severe skin burns was just unthinkable!!! In July 2011, my family went on vacation to the beach. I was able to play in the ocean, walk on the beach at sunrise/sunset and even went parasailing. The colostomy has not slowed me down. Stella (my colostomy) and I have had some issues occasionally when she wants to act up, but I try to have a sense of humor about it because I don't like to think of the alternative. I haven't tried to irrigate because as Belle said, I'm not willing to dedicate X time each day to do it. Maybe someday I will, but for now Stella and I are getting along just fine the way things are.

As with the whole cancer journey, I refuse to be defined by my permanent colostomy! In fact, some days, I almost forget that I have it.

Good luck to you on this journey! The key for me, is to make peace with whatever decision you make and move forward with it!

Hugs,
Cindy, mom of 3, 49 yo
Dx 7/9/10 RC, stage ??, at age 43
Transanal excision - 8/16/10
APR surgery - 11/10/10, Stage IIIc RC, perm colostomy
4 rounds FOLFOX - 12/3/10
28 rounds Radiation - 2/11
4 rounds FOLFOX - 3/11
CT Scan - 7/12 - NED!!!

User avatar
eitter
Posts: 1018
Joined: Sun May 21, 2006 3:53 pm
Location: Tempe, AZ
Contact:

Re: Permanent Colostomy - Quality of Life

Postby eitter » Thu Feb 23, 2012 11:27 am

Hi Hart2hart, not sure of your real name. :)

First BLESS YOU for being such a supportive person!!!!!! I say this because after 24 years of marriage my spouse left me becuase of my Colostomy, he thought it was gross and disgusting and could neverl have sexual relations with me ever again.....I could go on and on , I did write in a book about my experience. In fact go to this website http://www.livingandlaughing.com/ I am in her latest book and she also has a Colostomy and has written several books about Colostomy's! But now looking back, I am glad this happened to m e, may sound strange, but why would I want to spend another day with a man like I had and I am just sorry iot took 24 years to figure out what a material ASS he was!

But I have had a Colostomy for nearly 6 years and my dad has had one for 35 years. I lead a relatively normal life, I have many other issues besides my colostomy. I swim, exercise, travel...... If you have any other questions please let me know!
Blessings,
Liz DENNIS
Tempe,AZ
DX 05/06 Rectal
6 Weeks radiation with 5FU
LAR 10/06 Stage III
Temp Ileo, reversal failed in 05/07 after 1m in hospital came out with a permanent colostomy
http://www.runlizrun.com

User avatar
Gaelen
Posts: 3833
Joined: Fri Jun 13, 2008 12:57 am
Location: CNY
Contact:

Re: Permanent Colostomy - Quality of Life

Postby Gaelen » Thu Feb 23, 2012 12:52 pm

Hart2Hart, I'm glad so many people chimed into this post. Wednesday is my chemo day, and yesterday was complicated by my newest port (#3's the charm!), so I couldn't really respond. But it looks like you got some really good perspectives.

There have been a couple of older threads that include ostomy pros and cons and discuss quality of life. Most of my story is included in them, so I'll link them and not repost it. Some posters who don't come by as often, or who have passed, also commented here - but I think their input may also be helpful as Pete makes his decision.
I have an ostomy - and I'm OK
Understanding the attitude towards ostomies...

Full disclosure: I started both of these older threads, in an effort to bring some positive discussions of life with an ostomy to the board. Why? Well, a couple years ago this place could be kind of intolerant towards or negative about ostomies. The anti-ostomy "guest" mentioned in one of the threads became my personal internet stalker for about a year after the first of those threads was posted. Luckily, her internet service provider finally stopped her behavior. But yeah - at one time, that's how difficult it could be to come out with positive thoughts about having an ostomy on this forum. So I'm really, really glad to see that someone can now ask questions about quality of life with a permanent colostomy and get supportive, honest answers from posters who respect each others' points of view.

re: "My pete is an architect who loves to cook (aren't I lucky?) .....so eating is a big deal in my household."

Well, I'm a foodie. ;) I have a food blog and write a food column for Examiner.com/Syracuse. So eating (and cooking) is a big deal in my household, too. I have had to adapt a few things - but several of them have been due to chemo and multiple surgeries.

I have a peristomal hernia, which does give me some food issues because stuff gets "stuck" in the loop of intestine inside the hernia, and then I risk a blockage. I can't eat more than one or two nuts or seeds unless they are ground into butter - or finely chopped to make a nut breading or topping. I can chew-chew-chew and the occasional walnut in a brownie isn't gonna kill me...but I am very very careful with nuts and seeds. I am also very careful with:
- raw veggies, especially the kinds with thick or tough skins
- raw fruits like grapes (same tough skins issue) and berries with big seeds
Popcorn is a no-no. For that matter, Utica Greens are a no-no, too, unless I make them and make sure the tough stems and veins are taken out and the leaves are chopped up really fine even to a chiffonade.
I can eat asparagus or broccoli pureed in soup, and actually can now manage broccoli florets that have been well cooked. But no way can I eat the stems, or unpeeled whole asparagus. OTOH, I can eat cauliflower any way. Go figure. Some things, Pete will just have to experiment with and learn as he goes. But as far as being a foodie goes, I can pretty much "taste" anything. I just can't have more than a taste of the stuff that I know gives me problems. ;)

Hope this helps, and hope that Pete can make a sound decision with all this information. Whatever he chooses, it has to be right for him.
Be in harmony with your expectations. - Life Out Loud
4/04: dx'd @48 StageIV RectalCA w/9 liver mets. 8 chemos, 4 surgeries, last remission 34 mos.
2/11 recurrence R lung, spinal bone mets - chemo, RFA lung mets
4/12 stopped treatment

hart2hart
Posts: 796
Joined: Wed Nov 23, 2011 10:46 pm

Re: Permanent Colostomy - Quality of Life

Postby hart2hart » Thu Feb 23, 2012 1:14 pm

Hi - hart2hart here, my name is Julie and i just appreciate so much your MOST INFORMATIVE WONDERFUL thoughts,
tips, life lessons, etc.
Have to do another thread on picking our surgeon ASAP.


hugs all,

Julie H,
Stamford, Ct
peter - lcr - 11/11
Pete (hubby) Stage 3 VLRC - 11/11
Chemo/Rad/Ace Surgeon - 11/11 - 4/12
Oxi/Xeloda (Severe Toxicity to OXI) - 5/12 - 6/12
5Fu Only - 8/12 - 2/13
Liver Resection/Hai Pump/Folfiri/FUDR - 10/13 - 5/14
Lung Ablation (MSKCC) - 12/31/2014
Xeloda through 4/2015
NED - 1/2015 - 1/2020
Hai Pump/Port Removed - 1/2020

JennyB
Posts: 240
Joined: Mon Sep 21, 2009 10:59 am
Location: St. Louis

Re: Permanent Colostomy - Quality of Life

Postby JennyB » Thu Feb 23, 2012 1:57 pm

My husband had a very similar experience to NW Girl. He's had his reversal for almost two years, but it's just not working. Bad pouchitis, lost 60 lbs, etc. He is getting a permanent ileostomy back on Monday and neither of us can wait (well, can't wait until it's over...no surgery is ever fun). He and I both feel he is going to get his life back. He was worried that I would be upset, but all I care about is that he feels well. The bag doesn't bother me at all. Just wanted to give my viewpoint, too!
Jennifer
Wife of Scott, diagnosed at age 34 on 3-27-09, now 37
Stage III-C CC, 15 out of 36 nodes involved
Ulcerative colitis since age 11, colon removed 3-25-09
He finished Folfox on 9-23-09
Permanent ileostomy March 2012
NED so far!

NWgirl
Posts: 6659
Joined: Sat Feb 02, 2008 3:24 am
Facebook Username: Belle Piazza
Location: Battle Ground, Washington

Re: Permanent Colostomy - Quality of Life

Postby NWgirl » Thu Feb 23, 2012 6:19 pm

Be careful Jenny, those 60 lbs. can jump right back on him once he's able to eat again! I'm up 10 so far! :(

On a serious note, when I asked my husband if he'd be okay with me going back to the bag his only comment was "what took you so long?". He hated seeing me in pain all the time.

I wasn't looking forward to the surgery either, but since it was done laproscopically, the healing was REALLY FAST! I was truly surprised. I was also surprised at how quickly I adjusted back to life with an ostomy - it's like riding a bike - something you just don't forget; you just pick up where you left off. I remember vaguely waking up in post op and thinking "thank God, it's over - no more poop problems" and then fading back asleep. But that feeling of relief, I'll never forget that.
Belle - "Don't Retreat - Reload"DX 10/07 Stage III Rectal
Surgery 11/07; 27 of 38 nodes
Perm Colostomy 8/11
12/10 recurrence lungs & LN's
VATS Jan 2011
Radiation Oct 2013
Chemo for Life
2012 Colondar Model


Return to “Colon Talk - Colon cancer (colorectal cancer) support forum”



Who is online

Users browsing this forum: kaloy85 and 5 guests