Total Colectomy??? My doctor mentioned this today...

The insurance company will not consider a colectomy with those risks elective. I was afraid of the same thing before I had my surgery, but there was no issue. That being said, depending on the caliber of the GI, some are REALLY good at removing even the scariest polyps. Some people will hold onto their diseased colon till their last breath for reasons I'll never understand . . .

Wait a minute, as one who was severely damaged by a pelvic surgery, later discovered to be unneeded, then ended up without the use of my healthy colon and so far lucky to have the use of my small bowel, though I keep getting stomal food blockages..............

UNLESS you are having symptoms or have personally had suspicious looking places in your colon on colonoscopy, don't get your colon out just because it MIGHT become cancerous. Also you need to check into genetic testing. You may not even have the gene for this.

The colon is the organ that absorbs water and electrolytes back into our bodies. Without it we are at higher risk of kidney stones and for some reason for gall stones. NOooooooo you don't want all those other organs out either unless you are having issues. (maybe you were just kidding about those

BUT take it from me, I have been down a bad road and not want to see someone else go the same route. Also once you enter the surgical world, IF something does go wrong, and one thing leads to another, you never get out of the loop. It can be a nasty road. Not raining on your parade and you know yourself better than I, but please give this MUCH MUCH MUCH though. Rosemary

Starting Over, I've talked to a few people in the support group I go to locally who had situations like yours -- watched many family members die from colon cancer, had lots of polyps. Living without a colon is nothing compared to living w/that fear, especially when you're starting to show signs.

My surgery was for something completely different, so it's only partially relevant, but here are a few questions you might ask/things to investigate:

Would they be doing a reversal or would the surgery be permanent?

Here are some of the options as I understand:

1) If your whole colon is out, get an ileostomy. This is where they make a hole in your belly and put the end of your small intestine (ileum) though and you have a bag for the rest of your life (this is what I have, and w/the right attitude, it's not that big a deal).

2) Hook up the end of your small intestine to your rectum. You might need a temporary ileostomy to let things heal or not. Here you'd want to ask a lot of questions, because some folks end up with a lot of dietary restrictions w/this surgery to avoid diarrhea/incontinence.

3) Make what's called a j pouch out of your small intestine that attaches to your rectum. This is a reservoir that functions more like a colon. This surgery would be done in two or 3 steps, w/a temporary ileostomy. The advantage over #2 is that the reservoir slows down transit and can give better functionality.


Would you keep your rectum? What is the risk of cancer there and how would you be monitored?

Can you have the surgery laproscopically? This is where they only make some small incisions (my colon was taken out through the hole that became my stoma -- where the intestine comes out), rather than doing open surgery. Recovery is often faster, and there's less risk of scar tissue inside.

As for risks, there are risks w/all surgeries, but a large percentage of people are fine after these surgeries. The colon is basically a holding tank for waste -- it's not like losing a more complicated organ.... it does absorb a lot of water, so you have to be mindful of keeping hydrated.

It is very overwhelming at first, but you've come to a good place here. I'd encourage you to go to a local support group too if you can and meet some folks in person who have been in similar situations.... feel free to ask more questions as you learn more.

     I had a total colectomy with end ileostomy because of ulcerative proctitis.  I do have a bag and it was a life saver to me.  My rectum was badly diseased but my colon was not!  I am now 65 yrs of age and had my surgery when I was 63.  My paternal grandmother died from cancer of the rectum at age 65 back in 1952 and I was told by an elderly family friend that nana's symptoms were the same as I suffered.  So, I am glad I had that operation.

Starting,

Oh, I see, that is a lot of precancerous polyps. Good that you are starting all the research. Yes, laporoscopic is the way to go. You are getting some good specifics here. Good luck with your decision. Rosemary

Blessed mom, thank you so much for the website, I will head over there and get to reading. I appreciate you taking the time to comment. I wish my mom would have been more attentive, she didn't do any screening until it was to late and she was showing major symptoms. She didn't want to admit the facts. I have taken a totally different approach, and have been very faithful with the screenings, because I never want to develop the cancer. It has been a long hard road, and I hope I never have to see anyone else suffer through it. ;-)