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fiance will have to get colostomy

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fiance will have to get colostomy

Postby lacuca76 » Fri Feb 02, 2007 11:38 pm

Hi all
I am sure that something like this has been posted before, but I could not find something that answered my specific question. My fiance was diagnosed with stage 3 rectal cancerin December. I am 29 and he is 32.

He has had three opinions from surgeons at major medical centers around the country. All of the surgeons think the cancer has invaded the sphincter so much that he will need a permament colostomy. He is very upset and the most I have been able to do is convice him to see a therapist. But at this point he wants to refuse treatment rather than live with a colostomy.

While I am devastated about this news, I am prepared to move forward and share a life with him regardless of what happens.

My questions are the following:
1. For those of you who have faced the best news is there anything that loved ones can do to help a person going through this.
2. Is there anything he can do to understand that a colostomy is not the end of the world.
3. Aside from Sloan Kettering and Mayo would any of you offer and other good rectal surgeons he could possibly talk to?


wow that was a long pos
Many thanks,
cuca
lacuca76
 

Postby MissKim » Sat Feb 03, 2007 2:01 am

Hello. My heart goes out to you and your fiance. This whole cancer thing really turns lives upside down. I have had an illeostomy for 3 1/2 years. I refuse to let it slow me down. I go camping, bike riding, swimming, and waterskiing to name a few things. I wish things were different; however, this is what had to be done to save my life in summer of 2003 when I was 38 y/o. I was in a medically induced coma for 17 days due to a colon blockage/sepsis and awoke with the ileostomy. I didn't even know it was coming. I remember asking the wound care nurse, "well, can I still waterski?" And she told me yes. The only thing that the wound care nurse told me that I can't do is sit in a hot tub. Not too bad. There are many colon club members with ostomies at this site. I think we could all share stories of how we have adapted. Best of luck to you and your fiance.

Miss Kim
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Postby LA8 » Sun Feb 04, 2007 5:03 am

Hi Cuca. I was facing an iliostomy when I had surgery in Nov so I asked all the same questions. A friend of mine who has a perminent bag has no problem whatsoever, and lives a completely normal life. Another friend who had a temporary bag, also had no problems and laughingly told me how he could take a dump while talking to someone he didn't like. It is quite a scary prospect, but when you become a cancer fighter you find it easier to cope with just about anything. In my case the Surgeon was able to repair rather than rebuild so I woke up without the bag and I am truly thankful! Your fiancee will be amazed at what he will be able to handle. Best of luck to you both!
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Postby johnnys84 » Mon Feb 05, 2007 10:00 am

I was diagnosed with colon rectal cancer in June 06, and immediately thought Sloan was the way to go, long story short I was not at all impressed. I ended up seeing Stephen Gorfine in NYC 212-517-8600, who was just totally amazing and down to earth. If you have the opportunity I would seriously suggest seeing him, he gave options that sloan never mentioned or said were not possible. Hope this helped.
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Check this

Postby Edward » Mon Feb 05, 2007 11:40 am

I was at a conference in at Penn State Hershey regarding some of this. Here is link:

http://www.hmc.psu.edu/colorectal/team/index.htm

Dr. Walter Koltrun talked about huge advances in surgical techniques to prevent the colostomy. Hang in there.
Livestrong,

Edward
Colon Cancer Class of 2002
http://www.coalregionvoice.blogspot.com/
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Postby Lifes2short » Tue Feb 06, 2007 12:57 am

I hope your fiance will go ahead with the surgery and be as aggessive as possible at getting all the cancer out. Please read the stories on the forum. There are lot of people battling metastatic colorectal cancer. Rectal cancer is very aggressive. Some studies suggest that it is more aggressive in young people. His best chance for survival is to get ALL of the cancer out of his body. I hope that he has started treatment while he is seeking other opinions.

I was diagnosed with Stage III Rectal cancer in December of '05. Mine had also invaded my sphincter wall. I did chemo and radiation then had my rectum removed. When my doctor first told me that I would lose my sphincter, I was a bit upset. But I have two small children and my first and foremost thoughts were how best to save my life. After surgery I found out that my cancer had metastasized to my liver, so I am a stage IV patient. It took four months to get a proper diagnosis. I still believe that if I had been diagnosed and treated sooner, perhaps we could have stopped it before it spread.

Having a colostomy is not the end of the world. I am very active. I still swim, run, ski, camp, hike. The colostomy just becomes a normal part of your routine. Some people with colostomies irrigate - a means of training the bowel to only empty every 48 hours (some people even go 72 hours between irriagations). The rest of the time they wear a cap or a very small bag. There are lots of good colostomy products out there. He will still be able to dress pretty much the same and have the same lifestyle as before.

Life is precious. He needs to focus on fighting this cancer thing with all his might. When it's all said and done, the colostomy is a very small thing. Ask him to do it for you.

For more help and info on ostomies, visit UOAA.org. It's a very helpful site for ostomates. And when it comes to cancer allies, you can't find a better place than this!!

Best of luck to you.
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bud

Postby bud » Tue Feb 06, 2007 4:50 am

everything has been said, and it doesn't change the way you feel about getting the colostomy...though I was sure my life was over, etc. it turned out to be the very least of my worries.
The alternative is simply out of the question when you have such a simple life-saving procedure available to you. Yes you will feel like shit for a while, and everytime you look at it you'll say why me lord? My life is over, etc. Then slowly it becomes less important; it almost manages itself..all you have to do is empty it once in a while-(otherwise you'd forget it was there.Do it! And then go on with your life...as laong as you accept it, so will everyone else.

Bud
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rectal cancer

Postby baker1 » Wed Feb 07, 2007 9:09 pm

I HAD MY RECTUM REMOVED AND A NEW ONE RECONSTRUCTED. MY CANCER IS GONE. I ECEIVED RADIATION AND CHEMO.
MY DOCTOR IS DR. JOHN MARKS AT LANKENAU HOSPITAL IN WYNNEWOOD.PA. PHONE 610-645-9476. CALL HIM FOR ANOTHER OPINIONAS HE SAVED MY LIFE.
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colostomy

Postby mnjy » Wed Feb 07, 2007 11:02 pm

Cuca,

Although my husband did not/does not have cancer (but by the grace of God)he had to have an ileostomy due to ulcertive colitis. I know exactly how you feel. It's so hard to imagine what it is going to be like, even how it is going to look. I didn't know what to fathom and that was so scary.

I'm sure you are conflicted inside because you want to be supportive and encouraging yet you are scared for yourself and what your future holds as well. That is understandable because you are human. You are a couple so this is happening to both of you. It is not as bad as you and your fiance are thinking though.

You will learn tricks along the way when you are intimate. Gosh, I never thought I'd be emailing a stranger about this topic but it's a fact of life and your are a newlywed to be. My husband would empty the bag and then we'd roll it up a bit and tape it up. You barely knew it was there.

Somehow you will both just find the strength that you never knew you had. Just be as supportive as you can and be patient with him. It sucks but it's just something you have to do.

Your fiance will learn his eating patterns and that can help when you have to go out and be social so that his output will be less or he can try eating foods that will bind his stool (marshmellows for instance) Everyone may be different so consult that with his doctor before you try it. Binding foods might not be an option for his case though. I'm just sharing what worked for us.

I would say the best advice I can give you is be in tune to his feelings. Don't always be a cheerleader - might piss him off if he feels like venting and no matter how much you try to cheer him up, he won't see it. Sometimes it's just better to say nothing but just look into his eyes and share your soul and trust in the love that you have. It WILL get you both through this. I truly wish you the best. BE STRONG!
mnjy
 

Postby cynnycal » Wed Feb 07, 2007 11:36 pm

you've gotten some great advice here. All i wanna throw out there is my kpouch situation.
i truly feel it's a really good option that doesn't often get brought up by surgeons, so i'm taking it upon myself to be a kpouch cheerleader. ;)

Cuca, at age 25 i learned i had stage III rectal cancer, and after doing chemo and radiation, they told me the tumor was too low in the rectum, and they wouldn't be able to save the sphincter muscle.
as you'll see if you search my past posts...i was pretty devastated at this news.
i really felt hopeless. BUT i researched alot, and finally settled on having a Kock pouch.
you have to be seen by a doc who really specializes in em (i like to refer people to the amazing Dr. Fazio at Cleveland Clinic. An absolutey FANTASTIC place for this stuff...and a very good place for a second opinion).
And they can determine if you're a good candidate of the surgery.

so please, read some of my past posts, especially things like the pictures i've posted (to give your fiance an idea that it's not as horrid and offensive as it may seem...like my comparison shot here: http://www.cancer-sucks.com/rebecca/sto ... 20shot.jpg)

just know that there are options out there, and to make sure he is as informed and educated as he can be going into this decision, since it is such a life altering surgery.

but as others have said...compared to the alternative (cancer is not gonna spontaneously go away. as much as we wish and wish it would), a colostomy doesn't have to be the end of the world.

the uoaa board is an excellent resource (although, i must admit, when i was looking into all this, it was a bit intimidating to me at first. and overwhelming reading about all these people. but the people on those message boards, many of whom i've met in person, have become an infallible resource for me now)

also, try the j-pouch.org board. they have a kpouch section of it now, you can get a better idea of how it works, etc.

good luck, and please do keep us updated. feel free to PM me if you have any questions i didn't address...
Becca
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