Insight on Permanent colostomy

CoryWebb88

Hello,

I was looking to see if some folks here could provide me some information on living life with a permanent Colostomy. I was diagnosed back in 2020 with Rectal Cancer. Since having treatment and an Ileostomy + reversal I have struggled with rectal incontinence. Not having a rectum and the area where my tumor was removed has made it difficult to hold stool. I have been performing enemas every other day and would I say I have about 60-65% success rate. It is very hit or miss and sometimes this leads me in the bathroom for a long period of time. My wife and I are in the process of having a child and my concerns are my issues with being in the bathroom will take away time from more important things. Currently this is a constant point of anxiety for me as my incontinence rules my daily do’s and don’ts for the day.

What has life been like for folks here who may be on a Colostomy?

Was it hard at first and got easier?

Is the skin irritation constant?

Is there anyone here who had my issues and went to a permanent colostomy? If so are you happy you made the change?

Can you still live normal life like golf, workout, run, swim?

Is a colostomy very similar to a ileostomy?

Can someone point me in the right directions to some articles?

Thank you, 😀

iron9nadin

I don't have answers for your questions, unfortunately.

My dad has a Colestomy now and has the option to keep it longer and he is thinking about doing that. He had full sigmoid removed and is late 70's. He said it is quite easy to manage. He dumps/cleans it out a few times a day and changes it every few days.

What is the iliostomy like? I'll be having a lower anterior resection with iliostomy in 3 weeks. I'm anticipating my removal to leave my with 10cm of rectum left.

How much was removed during your surgery and how has the recovery been?

Thanks so much,

Nadine

CoryWebb88

Hello Nadine,

I found the ileostomy for myself to be difficult. I was diagnosed @ 32 years old and don’t feel I was given proper information prior to feel prepared to what came. Looking back now, it’s manageable and allows for a good quality of life. I was able to work full time, spend a long weekend away just provided I brought the needed supplies. Dealing with my situation I have now where I have no control and a lot of what my day to day looks like is controlled by whether I had a good enema or not really strains the brain. I spend about 2hrs in the bathroom every other day. That being said prior to doing enemas and having fecal incontinence I was in the bathroom for hours and hours every day. My butt was raw from all the wiping. So this is certainly better. I was able to travel to CR for 2 weeks with minor setbacks, I get to go golfing. Looking to have a kid my fear is missing out or not being able to support when I am having those bad times or bad days.

My full rectum was removed which was not discussed prior. My tumor was in a tricky spot which was a surprise. I was told I was young and healthy otherwise that recovery should be quick and better than most. Now I have heard from multiple different opinions that the surgery was done well and that all things considered I am lucky to be where I am with how complicated it was.

I wish you success with your procedure and please reach out with any questions. Best advice I can give is really look into your diet as that will assist in your ileostomy.

Best wishes!!