Questions... scared!

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New Member

Date Joined Mar 2008
Total Posts : 5
   Posted 3/27/2008 5:23 PM (GMT -6)   
Hi Everyone... I just found this site and it looks like you all are such a great supportive group!  I hope that maybe you can answer some questions for me.
I'm 41 and have now had two gastroenterologist and an oncologist at Fred Hutchinson Cancer Center recommend I have as much of my colon removed as possible.  I have a genetic disorder... attenuated familial adnomatous polyposis... which means that I keep getting a bunch of precancerous polyps and have an 80 to 100 percent chance of getting colon cancer.  In addition, I suffer from chronic severe constipation... and my colon is so twisty and looped around that it is next to impossible to do a colonoscopy on me to screen for polyps. 
We see the surgeon tomorrow and I have to decide how much colon I want removed.  I was thinking just the right side of it, but the oncologist wants me to have a subtotal in which the rectum and a few inches of the sigmoid would be left.  What I wonder is what are the chances that I would be able to have a subtotal without a colostomy?  The oncologist said that he thought they would be able to do a subtotal without me needing a bag... but that there is a chance I would need on temporarily.  What have been your experiences?  Has anyone here had this surgery without needing a colostomy?
I want to have the surgery laparoscopically, but I have had three major abdominal surgeries already (ruptured appendix, gall bladder removed, and c-section scar).  I'm thinking that I won't be a candidate for laparoscopic surgery.  For those who had open surgery, how long did you stay in the hospital?
How soon were you able to eat again?  I've read some people lose weight and others gain weight.  Can anyone explain why there would be weight gain after this surgery?  I've recently lost 70 pounds and I really don't want to gain it back again.
Finally, I'm totally phobic about surgery.  On my last surgery, they had trouble intubating me.  I'm terrified that they will have that problem again and not be able to get oxygen to me quick enough.  I am almost panicked right now just thinking about it and want to back out of the surgery and just not have it done.  But of course, there are serious risks with that decision, too. 
Help! confused

New Member

Date Joined Feb 2008
Total Posts : 14
   Posted 3/27/2008 6:13 PM (GMT -6)   
My dad was had 24 inches of his colon removed in August07, at first they didn't do an ileostomy, 3 days later he was having incredible pain and they went back in and "checked" things out and then did the ileostomy to allow his colon to heal where they had reconnected him. He is 70 years old and his system took a long time to wake up following the surgery.  He has since, Feb 08, had his ileostomy reversed and is doing very well.  My advice to you would be to ask as many questions as you possibly can.  And try to stay positive.
I wish more than anything that I had found this site before he was hospitalized and had his surgery.  The information and people that you find and "meet" here are an invaluable resourse.  They are the most supportive, caring group of individuals you could ask for.  They offer their own experiences as advice and support.  I've learned so much from reading this website, information that I couldn't get from anyone at the hospital.  I've recommended this site to the Dr's that we dealt with as an information source.
Thanks to all of you for your insights.

Regular Member

Date Joined Jul 2007
Total Posts : 280
   Posted 3/27/2008 7:43 PM (GMT -6)   
I too am 41 and I am in the process of j-pouch surgery where they remove the colon and pull down the small intestine and form a pouch where I will eventually have bowel movements through the anus. Some can be done in 1-2-or 3 steps depending on how diseased the colon is. Mine is a three step process about 3 months apart and I've had two different types of temporary ostomies. The two prior surgeries were done open (across) because I had a c-section previously (up & down). The first stay after surgery was about 5 days and the second was 7. It really depends on if there are any complications (and they can arise with any type of surgery) and how quickly your bowels wake up after surgery, but the norm is 5-7 days. I went back to work after both surgeries at 6 weeks but I was very sick before my first surgery and I had lost 30 lbs and had to regain strength before I could return.

They usually don't let you have anything the first day, then water, clear liquid diet after 2 days and begin a low residue diet for up to 6 weeks after surgery, slowly adding more foods to see how they are tolerated. I was back to eating mexican and chinese foods after 6 weeks, but won't do popcorn or nuts or raw fruits for fear of a blockage.

I understand your fear of surgery, I waited 5 months after my first to gain weight and I was not looking forward to more, but it has to be done, so off I go for more! In your situation it seems like you really have no choice but to have the surgery if cancer is found and it sounds like it will be eventually, so why not now before you have to deal with chemo on top of it?

Good luck and feel free to ask questions here, you will find a lot of support.

Originally diagnosed with CD in 1991
Total colectomy August 2007 now saying "Undetermined Colitis"
2nd step J-pouch formation -January 2008--3rd step -April 2008

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