Alternatives to a permanent colostomy

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Alternatives to a permanent colostomy

by thecyclist on Wed Dec 31, 2008 12:00 AM

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During a routine coloscopy as part of my annual checkup a flat polyp too large for immediate removal was found in the lower colon near the rectum. A biopsy was done and the results found some cell changes in the polyp indicating it was turning cancerous. I was referred to a surgeon who has recommended a permanent colostomy. This sounds exessive and I am devasted as I have no symptons and lead an active life gardening, spinning and cycling. Are ther altrenatives????

RE: Alternatives to a permanent colostomy

by HIGH_STRUNG_DAUGHTER on Wed Dec 31, 2008 12:00 AM

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I'm not an expert in any way but I've personally never heard of a tumor/mass that big in the colon that wasn't cancerous leading to what could be a colostomy?!  I know my Dad's surgery was to remove a portion of his colon that they thought was diverticulitis back in March.  When they opened him up the tumor (which was cancerous) was blocking his colon so much they had to give him a colostomy until the cancer could be shrunk down.  He has now just completed 12 very aggressive treatments and is getting his scans redone to see if the mass is small enough to go in and remove (colon resection) and to reverse the colostomy.  I don't know what to tell you other than what I would do in that situation.  I think you should have a 2nd opinion.  I'm surprised that they saw this on a colonoscopy but haven't been in a surgery yet to actually look at it with their own eyes?  I just think they did my Dad's colonoscopy and saw a blockage and had no idea to what extendt it actually was until they opened him up.  I just think you need to really look into it.  make sure the surgeon is experienced with colon surgeries etc.  If it comes down to needing the colostomy bag there are worse things in the world but I know if my Dad were reading this he would tell you to make SURE before you do it that there is no other option because they're not what you would want unless it's necessary.  Hope this kind of helps a little?! 

RE: Alternatives to a permanent colostomy

by ernie58 on Wed Dec 31, 2008 12:00 AM

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I do not want to put down the dr that gave you this diagnosis but from what you state, I agree that it is Bull.

 

I  was diagnosed with a tumor the size of " agolf ball" in that area. Luckily, I was told to go see a specialist. You may have to go through chemo and some surgery but not a permanent colostomy. I would suggest doing some research on a surgeon in Philadelphia - Dr. John Marks.

 

Good luck and hang in there!

RE: Alternatives to a permanent colostomy

by JudyEH on Wed Dec 31, 2008 12:00 AM

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On 12/31/2008 thecyclist wrote:

During a routine coloscopy as part of my annual checkup a flat polyp too large for immediate removal was found in the lower colon near the rectum. A biopsy was done and the results found some cell changes in the polyp indicating it was turning cancerous. I was referred to a surgeon who has recommended a permanent colostomy. This sounds exessive and I am devasted as I have no symptons and lead an active life gardening, spinning and cycling. Are ther altrenatives????

By all means, get a second opinion.  Colonoscopies are a drastic step, necessary, sometimes, and often reversible.  See another doctor, before you submit to this surgery.  Colonoscopies do not need to slow down your active lifestyle.  There are some limitations...hot tubs, saunas, wrestling would be a few.  Gardening, cycling, no problem.  A surgeon requires 2 inches of bowel near the anus, so save your anus.  I've been there, done that and now have had it reversed.  I had a colostomy first, then after chemo, radiation, surgery (which needed an ileostomy as the colon healed) then more chemo, then reversal of the ileostomy.  A long hard road, but now I am healthy again.  Wearing a bag did not mean a change in my lifestyle or in my wardrobe.  (Bikinis were out!) Get another opinion, and get on with living.  I was surprised at how many people have ostomies, and one would never know.  Good luck.

RE: Alternatives to a permanent colostomy

by Waggy on Wed Dec 31, 2008 12:00 AM

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On 12/31/2008 thecyclist wrote:

During a routine coloscopy as part of my annual checkup a flat polyp too large for immediate removal was found in the lower colon near the rectum. A biopsy was done and the results found some cell changes in the polyp indicating it was turning cancerous. I was referred to a surgeon who has recommended a permanent colostomy. This sounds exessive and I am devasted as I have no symptons and lead an active life gardening, spinning and cycling. Are ther altrenatives????

Hi there i agree with other responses get a second opinion, as i am living with a colostomy bag and i have been told there is no chance of reversal, i was devastated because i too was a very active person and it does change your life i have become very paranoid about it and terribly nervous about having an accident while out. It has leaked on several occasions, i take a laxative to keep the consistancy so to avoid accidents but sometimes it just happens. I hope and pray that i go into remission but they so there is no hope of that even though i have been on chemo for 18mths straight. SO PLEASE GET ANOTHER OPINION. I would love to here from you after you do, i wish you all the best and stay positive.

RE: Alternatives to a permanent colostomy

by thecyclist on Wed Dec 31, 2008 12:00 AM

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Thanks for the advice. Unfortunately live in South Africa so I'm looking for specialists who may have followed Dr. Marks methods.

RE: Alternatives to a permanent colostomy

by megumiChristine on Thu Jan 01, 2009 12:00 AM

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On 12/31/2008 thecyclist wrote:

During a routine coloscopy as part of my annual checkup a flat polyp too large for immediate removal was found in the lower colon near the rectum. A biopsy was done and the results found some cell changes in the polyp indicating it was turning cancerous. I was referred to a surgeon who has recommended a permanent colostomy. This sounds exessive and I am devasted as I have no symptons and lead an active life gardening, spinning and cycling. Are ther altrenatives????

A good friend was told she would need a permanent colostomy for a cancerous growth near her rectum. Since she absolutely did not want a colostomy, she tried to gather as much information as possible on treatment possibilities for her type and location of cancer. As a result she found out that radiation treatment was an effective alternative in many cases. She took that info. back to her original doctor, who then investigated the info. himself and, after consulting with the radiologists in the same hospital, decided they could try the radiation treatment for her. Although the side-effects of the radiation treatment were certainly not pleasant, my friend is now cancer- and colostomy-free two years later and living an active life. Therefore, I heartily agree with the others' responses that you try to get a 2nd opinion and become as knowledgeable as possible about different possibilities for treatment.

RE: Alternatives to a permanent colostomy

by thecyclist on Thu Jan 01, 2009 12:00 AM

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Thanks to everyone for the responses. It's just amazing that so many people care so much and take the time to respond. As i live inKwaZulu Natal, a province in South Africa, I will have to limit myself to treatment here which is world class but just a matter of finding the right specialists. My plan of action will be to arm myself with all my reports and colonscopy photos which are with the doctor and get an opinion from an oncologist and a surgeon who specializes in colorectal surgery. Will keep you posted.

RE: Alternatives to a permanent colostomy

by ernie58 on Thu Jan 01, 2009 12:00 AM

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Dr. Marks has a colorectal foundation that publishes his work. You may find it on the web. Additionally, he works at a teaching hospital - Lankenau Hospital. I know that there have been many people from around the world that he has trained. Maybe there is a way that you can contact his office( or the hospital) about someone in your area that has been trained. 

My cancer has metasticized to a few areas but the first surgery ( The one that you referred to) was done laproscopically and actually discovered the additional site. However, this did not effect the surgery with the colostomy bag. I stayed on the bag until my chemo and second surgery were completed( about 11 months). I have been "bag free" for more than 2 years now.

 

Good luck, may God bless you and your family and Happy New Year.

RE: Alternatives to a permanent colostomy

by thecyclist on Sat Jan 03, 2009 12:00 AM

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I have armed myself with my records and I'm ready for a second opinion next week plus a visit to an oncologist. Found a good book on Google"100 Questions and Answers about Colorectal cancer" Very informative and has made me question why no one has recommended preoperative ultrasound for staging. This info would allow decisions to be made before the op on sphincter saving surgery or not. I agree that cure must be number 1 but if areas can be preserved, why not? Have been convinced to go on a cycle tomorrow. Probably do me more good than wallowing in self pity.
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