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Adenorcarcinoma - Colostomy forever

cida22
Posts: 2
Joined: Jun 2002

HISTORY: A portion of my intestine near to the anus was removed in 1999. Because the remission was over in August 2001 I went through 28 sections of radiotherapy and 6 of chemo. In Feb of 2002 I had 60 sections of Photo PH with internal temperature of 60 ceusus degree. AT THE PRESENT: Because the cancer is near to the anus, my doctor suggests that the anus must be removed although there is no sign of metastasis. MY QUESTIONS: If the surgery is performed I will have to live with the colostomy forever, otherwise, according to my doctor, my survival will be up to one year. I would like to hear experiences from people that had performed this type of surgery, how they are coping with the colostomy and from those who had decided not to do it. Thanks, Cida caroli_carol@hotmail.com

apjr's picture
apjr
Posts: 2
Joined: Jul 2002

It has been very difficult. I too was torn and only decided to do the colostomy operation after a whole lot of pleading by my wife and family. I am currently going to therapy. It will take you a while, I will not sugar coat it. But, you have to decide if the life you have is worth keeping as this, (as was my case) is the only way you will live. There is not a lot support groups where I am. It is a tough phycological and physical change, but it can be overcome. I fought it before and after surgery, until my depression started to overcome me. I sought help and it is getting better. There is hope, but you will need support and don't be afraid to look for it either. Good luck to you, and keep your hopes up.

pwilliams
Posts: 1
Joined: Jul 2002

I had surgery on 6/20/02 the surgery was sucessful, I have a permanent colostomy I am adjusting really well. I have even traveled to North Carolina from New Jersey. Remember it will just take a little longer in the bathroom than before, but it was very easy to get adjusted to that. I just make sure I have everything I need before I go to the bathroom. Just as I did when I changed my baby's pamper. I use a small tuperware to rinse my pouch out in and I also use a babywipe and q-tip to clean around the stoma.
Before I attach the pouch to the wafer I use a pin to pounch a small pin hole so that the gas does not build up also I use an asprin to control the odor. It's really not hard for me. Just have patience.

arntn
Posts: 16
Joined: Mar 2001

My colostomy was a given, my tumor was very close to my anus. I named her "Ruth" and I irrigate everyday with very few problems. Can't eat as much popcorn as I'd like to but at least I'M ALIVE! This all occured almost 7 years ago. bergy_1999@yahoo.com.

Nay Bug
Posts: 2
Joined: Mar 2013

I was diagnosed with Stage III Anal Cancer. Before I could start my treatment, the tumor doubled in size and caused a fistula ( a hold in the anal and vaginal wall) causing feces to go thru the front.  I had an emergency ( reversable) colostomy.  I have now had 2 rounds of chemo 33 rt and now NED. The pain and suffering from the cancer was soo bad I had asked for a colostomy but what told it was not the norm. I felt immediate relief after surgery that I told the Nurse it was my friend.  I am seriously considering keep**** it .The memories of pain, uncontrollable bowels and the smell are just more horrible than the life of living with a bag that can control smell , mess and no more pain is soo inviting.  I have a Dr appt Mar 22 to discuss the reversal. If my backend will constantly leak or not work right, I am keeping "my friend"

P.S. there are alot of youtube videos on ostomy care.  You do not have to limit activity, you can swim, run, jog, do bull riding... whatever it's really not that restricting.

tachilders's picture
tachilders
Posts: 315
Joined: Jun 2012

I have had a colostomy since June 2012, and it is pretty much second nature for me now to take care of it.  If my choice was get a colostomy or only live one more year, I would take the colostomy.  Unfortunately, even with the colostomy my timeframe may be short as I have pretty advanced stage 4 disease with mets everywhere (lungs, LNs, liver, peritoneum).

Tedd

taraHK
Posts: 1961
Joined: Aug 2003

I've had a colostomy for over 10 years. Yes, there is an initial adjustment -- both physical and psychological. But for me now, I hardly think about it at all. I can do everything I used to be able to do, including hiking, swimming, hot tub, international travel. And wear almost everything I used to (I don't wear very clingy fabrics around my midsection). It is not something I would wish on anyone, but it, in my own experience, it is really not that bad. 

Good luck to you -- with your choices and future health

 

Tara

John23
Posts: 1832
Joined: Jan 2007

 

Having  an Ostomy isn’t all as bad as one would think. It’s something that will change one’s life, but so does having cancer, or getting married, or having kids. Ok, maybe it’s not as bad as marriage, but it’s still life-changing!

 

Seriously, you can go here: https://www.ostomy.org/forum/viewforum.php?f=2&sid=3ca2d44cb85924bda70e8f2f1b6cf893

And read posts from people like you and me, and even some from normal people…

 

They’re people just like you see here; some have an Ostomy due to cancer, some due to Crohnes, some due to other medical reasons, and they’re all willing to give as much of a hand as is needed.

 

One thing I’d like to add, though…. If you haven’t had a second opinion regarding your cancer and what can be done, then you should take some time to do so as soon as possible. New surgical technology can come along and even the most qualified surgeon can miss knowing about it. Surgeons are often too busy to read the periodicals in a timely fashion, and they often learn about new procedures from other surgeons. Second opinions gathered by a patient is often more helpful than can be imagined!

 

I would get another opinion first. Second, third and more opinions are always better than just one..

 

 One more thing… Prior to any abdominal surgery, you should be provided a nurse that specializes in Ostomy surgery (They’re called: WOCN). The nurse will work with you to locate the best spot for Ostomy. Having it placed properly the first time, is like a choice between heaven or hell. You want to be able to get back to some semblance of “normal”, even though you’ll have the addition of an Ostomy.

 

Good luck with it all!

 

John

 

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