Colostomy

milliesmom · Regular Joined: 18 Mar 2008 Posts: 33

Would anyone mind talking about colostomies? I know that I am going to have a permanent one and there is not much out there on the internet.

They told me that my anus will have to go to, I suppose so there is no place for the cancer to return.

How did you all get your mind around this. I feel squeamish even talking about it.

It doesn't bother me, I don't think, having to change it, it's just that you are losing a body part, sort of. Maybe it is the same feeling people get when they lose their breast. I'm not sure.

I'm not sure others get squeamish about it either.

I would just like to hear how others have dealt with their colostomy and how long it takes to accept it as part of your body.

My doctor told me today that Bob Hope had one for thirty years and not many people knew about it.

Are there other well know people with them? I wish they would talk about it because it would be such a help to others.

Thanks,
Milliesmom

brainman · Posted: Thu May 01, 2008 3:25 pm Post subject: Re: Colostomy

milliesmom, I know that there is a colostomy support group because I have spoken at one of their meetings. I do not know if they have a online forum but you might want to google "colostomy support forum" and see what you find.

I know there are plenty of members here who have had or who have colostomies but not sure if theirs are permanent. Surely there must be several others who have had rectal cancer.
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Jim
Site Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendoglioma grade 3, same location.
My Story Part 1: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 2: http://cancerforums.net/viewtopic.php?t=8029
Blog http://jimhawkinsport.blogspot.com/

milliesmom · Regular Joined: 18 Mar 2008 Posts: 33

Yes,
I thought that there must be some people on here who have had permanent colostomies. I would very much appreciate anyone who has anything to contribute.

I am starting to wrap my mind around it. I was trying to tell my husband how I felt and I told him that it is sort of the same way he feels about nose sprays. He can't even stand the thought of someone spraying something up his nose. I felt that way too until I had sinus surgery and had to use a water pick up my nose for weeks to irrigate it. You just get used to it, just like I know I will get used to the colostomy.

Now that I'm feeling better about the colostomy, I'm having problems with the fact that they are taking my anus and sewing me up. I really hate that they might do this because we don't know what is coming in cures and reconstruction in the next twenty years, and it would be nice to have a chance to have my ability to move my bowels normally if some new changes happen in medicine.

My first surgeon told me that I might be able to keep my anus. I had never heard of anyone losing theirs and having to be sewn up.

I know this is very sensitive and not many people want to talk about it. I understand that completely. So if no one on here wants to discuss it, I understand.

I will try the google search for colostomy support and see what I find.

Thank you so much for your help.

Also, could you tell us what your talk was about?

Thanks,
Milliesmom

brainman · Posted: Thu May 01, 2008 5:41 pm Post subject: Re: Colostomy

My subject was "How To Live With a Chronic Condition." I believe a permanent colostomy qualifies as chronic Wink

.

I do hope others who know more about colostomies will reply to you.
_________________
Jim
Site Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendoglioma grade 3, same location.
My Story Part 1: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 2: http://cancerforums.net/viewtopic.php?t=8029
Blog http://jimhawkinsport.blogspot.com/

kalamity · New User Joined: 02 Mar 2008 Posts: 3

Millesmom,
I have had my colostomy now for one year and three months. I hated and dreaded the thought of it. My rectom and anus were removed--I was sewn up and a permanent colostomy was placed. it is not what i would want in a perfect world--once you get used to the supplies and changing the appliance it becomes much easier, it is very doable . You can wear your same clothing and no one needs know unless you choose to tell them. It gets easier as the days go by---yes, it can be a royal pain at times--but I continue my three bowling leagues, walk 4 miles a day, play with my grandkids---life is the same as it was before---ONLY NOW I AM FREE of Cancer---i would much rather be on this earth, living my life even if it means a colostomy.
There is a really neat forum just for colostomates. The people are fantastic and helpful, there is all kinds of info about supplies, how do make the mental adjustments---go to c3life.com you owe it to yourself to check it out.
I am 67 years ols and have been married for 47 years. My friends and family have been very supportative---it does change your life for a time--but don't be afraid!!!
Wishing you the best
Kalamity
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Keep on looking for the good

milliesmom · Regular Joined: 18 Mar 2008 Posts: 33

I want to thank you so much both both of you responding.

I understand what you mean about you would rather be alive with a colostomy than gone without one.

I understand that completely. I want to live and I will do what I have to do.

I guess what I don't understand is why some doctor's do not do permanent ones and other doctor's only do temporary ones. Maybe it is because my cancer is inside my rectum and just outside the rectum and they feel they must take everything out to assure me of a cure. In fact, those were the words of the surgeon, of both surgeons, but I guess I just don't understand why other surgeons think you can have a cure without taking everything out.

It could be that my cancer is worse than those other folks. With mine being outside the rectum it might mean that I have to have everything taken out. I just wish they would explain it better. I know they only have so much time, but I would like a better explanation.

Thanks so much for telling me about your experience and for referring the web site. I am going to check it out now.

Milliesmom

whipsnade · New User Joined: 30 Aug 2007 Posts: 8 Location: socal

i am going to have one as well to assure that the cancer will not return. yes i tried with chemo and rad therapy which was one heck of a ride. but after all that, aprox. 1 yr later they did a colonoscopy that disclosed cancer cells in the biopsy. they set a date for a colostomy the next day. this is to make a reoccurance less likely to happen. and as for your explanations you need from your doctor(s), DEMAND IT, it is your life, you are the boss! you will be in my prayers and wish you the best.
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stage 2 colorectal/diag march 2007/post chemo-radiotherpy

milliesmom · Regular Joined: 18 Mar 2008 Posts: 33

Whipsnade,

Which chemo did you do and why did they wait for a year to do surgery?

I was first told that I would take some pills, do radiation and then surgery. That was it. That was the first surgeon. The first oncologist too.

Then I change oncologists and they want me on pre surgery FOLOFX, surgery and post surgery FOLFOX.

What a difference.

It makes me wonder why after the first chemo/radiation you didn't have the surgery. I'm also IIB. Maybe you are IIA?
Thanks,
Milliesmom

whipsnade · New User Joined: 30 Aug 2007 Posts: 8 Location: socal

millie, they wanted from the beginning to do surgery then rad and chemo. this was based on what the oncologist/radiologist was referring from a "paper" that was done from a previous case where the patient also had conditions such as mine i.e. crohns disease as well as rectal cancer. i was a little nervous about basing a program for me from one study. i said lets try to keep the body parts first. they included a petscan and said that it might just work with just rad and chemo. a few months later they did a sigmoidoscopy ( months after i finished the chemo rad) which turned out to be all clear. then, approx 10 months from when i finished treatments ( this july 4 will be a year), i did a colonosopy that disclosed cancer cells in the biopsy. they called me the next day to schedule attack plan b (colostomy) later this month. my chemo was mitomycin then 5fu. hope that this helps, god bless!
_________________
stage 2 colorectal/diag march 2007/post chemo-radiotherpy

star · Regular Joined: 02 Sep 2006 Posts: 22 Location: Ohio

Hi millesmon

I have been a colorectal survivor for 6 years, my first diagnosis I had to undergo a colostomy, I was able to have it reversed after 4 months.
then 3 years later my cancer came back I had surgery in June of 2006 wasn't sure if would have to have another colostomy or not, but of course would know when I woke up. I did have to have the colostomy, but Ihad prepaired myself to accept it as I was 45 and had a lot yet to do in my life so knew it was saving my life. I then had complications this past December. I under went surgery again to remove an abcess on my tailbone, then surgeon then came acrossed a tumor on my bladder. Unfortunately they had to remove my bladder, so now I am one of the unique persons of having a colosotomy that I urniate and have bowel movements all in one. This has been a bit harder to accept but again it is keeping me alive! I have a loving caring man in my life that I will be marrying this summer. This cancer and the colostomy will not get me down, I will beat this!

As some posted before me, you will get used to having and accept and it will be a routine thing just like other things in your daily life.

I wish you the best, just remember to keep positive and strong it is important in your healing and survival.

With Every Blessing...Barbara

REB · Posted: Fri May 09, 2008 3:35 pm Post subject: Re: Colostomy

I had to live with one for 7 months. I just got it reversed 10 days ago. For the most part it didn't interfere with my life too much. There were days when I hated it, like the 3 times I had it leak at work and I had to change it in the work restroom.

It does take some adjustments in your life.

When they removed the tumor, one side of my colon was swollen, so the couldn’t reconnect. It would take a month or two before my colon would be ready. However, I could not do the surgery while on chemo, so I had to finish chemo.

I hope all goes well with you.

Colostomies are doable. It got ‘normal’ for me after the first month. After several months, I felt like an old pro.
_________________
10/01/07 - Removal of Stage III Colon Cancer Tumor and Temporary Colostomy
Started Chemotherapy 11-07-07 - FOLFOX regimen - 5-FU (5 Flurouracil) and leucovorin, oxaliplatin. Also Avastin
Last Chemo treatment 04-09-08, Colostomy Reversal 04-28-08 Age:41

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