Hi Pamela,

The decision to remove or keep the rectum is not an easy one to make, but I will say that unless there's a chance that the rectum will be needed for a future surgery (like in the case of a j-pouch), it's better to remove it and avoid future complications and rectal disease.

Part of that choice might also come down to the reason you have, or may need, an ostomy.

I would trust your doctors in this case. Best of luck with everything!

Pamela ... Hi and welcome to VO... I'm 67 & have had a total cholectomy in 1996. Then in late 2008 & into 2009, I required several other surgeries which left me with my Ileostomy and short gut syndrome. I was tested a while back for rectal cancer. It was after a member here was diagnosed & unfortunately he recently passed from cancer. He had his rectum as well. It was his experience & prompting for those of us with rectums to get tested or have them removed.

If I had dealt with cancer at all, I wouldn't hesitate to have my rectum removed. You said you were worried about this thicker stool you pass, when you are hooked up for a stoma, you may experience thicker stools at times as your body adjusts, but unless I'm wrong, most with ileostomies deal with a runnier output. I sure do. 

Make SURE you have a say on where your stoma is placed or you may need to buy new clothing to prevent the waiste band to your pants from sitting directly on your stoma & cause issues for you. Write on your skin in ink if need be to remember just where your waiste band goes and then aim for 2 or 3 inches below the lowest part of your elastic or band. 

Please do not be a stranger here. We have all been thru the surgeries, so if you have any questions at all, we may be able to help you with them, especially as you adjust to a pouchingcsystem. Ive worn a one piece & I sticknan osto-e-z-vent on it to help release any gas build up. This way you won't need to be laying on a bed to burp the gas out of the drain opening for output. Just start a forum & though it may take a few days, someone will get back to you. Weekends can be a bit slow, but we will get back to you ASAP.  Best wishes with your surgery when you have it. 

Hi Pamela 

I have an Ileostomy depending on what I eat changes the thickness of my output . Colon removed 2014 still had to go alot and irritation in rectum  . 2016 I got ( Norman) my stoma and being checked on a regular basis in 2022 was advised to have rectum removed before damage to it went any farther . It was done robotically so should no longer be chance of cancer . But no chance of ever having a reversal either which was what I was kinda hoping for but oh well  . After we lost our friend on here made me think i guess I made the right choice .  Hope maybe this helps in some way .

Hi Pamela!

My 61-year-old mother was diagnosed with chronic ulcerative colitis and colorectal cancer in December 2023. She also was suffering from extreme diarrhea. And a lot more other symptoms. She was in so much pain because of that rectum breaking down.
After undergoing chemotherapy and radiation, she had surgery in August 2024 to remove her entire colon and rectum, as it was the only option.

Although we were fearful of this decision, we realized that keeping her rectum could lead to serious complications. Now, 7-8 months post-op, I believe that opting for a permanent ileostomy was the best and life-saving choice. Stoma life is different, but it's worth it.

Thank you for your kind message. I am 72 and new to the colostomy experience. It is nice to know there are caring people.😀