Ostomy: Adapting to life after colostomy, ileostomy or urostomy

Posted by Colleen Young, Connect Director @colleenyoung, Sep 20, 2017

It takes time to become comfortable with an ostomy — a surgically created opening in your abdomen that allows waste or urine to leave your body.

Many questions may run through your mind as you practice good ostomy care and live your life. It can help to talk to others who have been there. Perhaps you'd like to ask others questions like: What can I eat? What about leaks? Can I go back to work after colostomy? Can I ride a bike with an ileostomy? Will everyone figure out I've had urostomy surgery just by looking at me? What about intimacy?

Welcome ostomates. Let's talk frankly about living with an ostomy. Why not start by introducing yourself? What type of ostomy do you have? How's it going?

Interested in more discussions like this? Go to the Ostomy Support Group.

kenc | @kenc | Aug 6, 2021

I have an ileostomy. The biggest hassle is changing the bag. It is difficult for one person to accomplish. There is always some level of discomfort in the rectal area.

Colleen Young, Connect Director | @colleenyoung | Aug 7, 2021

In reply to @carolbulson "Is this group active? I see the posts are 2017, nothing recent." + (show)

Hi Carol,
Yes, the Ostomy group is active and there are recent posts made daily. Do you have an ostomy? I look forward to learning more about you.

miriam57 | @miriam57 | Nov 10, 2021

Hi! I just got a colostomy on Oct 19. So I am pretty new. Hi Colleen

Colleen Young, Connect Director | @colleenyoung | Nov 10, 2021

In reply to @miriam57 "Hi! I just got a colostomy on Oct 19. So I am pretty new. Hi Colleen" + (show)

Hi Miriam! Good to hear from you again. May I ask, did you need the colostomy due to endometrial cancer or for another reason? How are you adjusting so far?

kenc | @kenc | Nov 11, 2021

I have had one for about 5 years now. Still have post operative pain and discomfort and forces a change in the way I schedule my routines.

miriam57 | @miriam57 | Nov 11, 2021

In reply to @colleenyoung "Hi Miriam! Good to hear from you again. May I ask, did you need the colostomy..." + (show)

Hi.
Well I stopped Carbo/taxol after 6 rounds the end of April. Everything had shrunk or not visible. The thought was to go to Keytruda to knock it out. After 4 rounds one tumor became 3 times bigger and was bigger than when I started, it decided to latch on to my colon. They can’t peel it off the colon so they had to cut the colon until they got clear margins. They decided since it was just the one tumor and everything was stable, we had this opportunity. I meet with the oncologist next week for how to get rid of any microscopic cancer.

Karen | @duckduck2020 | Nov 11, 2021

I had my ileostompy like last May in that time I went through adjustments but now it started protruding out in August . It got really bad and at first my wife could push it back in but then after awhile she could not , I was going to the ER toward the end to get it put back in . Then in Oct I had to have surgery again because it was coming out like 5-6 inches. . They went in a redid it! Now it is starting again. I am fine if I lay all day but when I walk or sit it protrudes .
I wish you the best of luck !

kenc | @kenc | Nov 12, 2021

In reply to @duckduck2020 "I had my ileostompy like last May in that time I went through adjustments but now..." + (show)

That is one situation I haven't experienced. Maybe try a different surgeon than the one that did the ileostomy? It is my understanding that sometimes an abscess can appear around the ileostomy. Perhaps something to discuss w/ the colorectal surgeon.

Colleen Young, Connect Director | @colleenyoung | Nov 13, 2021

In reply to @miriam57 "Hi. Well I stopped Carbo/taxol after 6 rounds the end of April. Everything had shrunk or..." + (show)

Oh wow, Miriam. That must’ve come as a shock. I’m so glad that surgery was available to remove the tumor. I’ll be interested to hear what you learn at the appointment next week if you’ll need further systemic treatment.

Is the ostomy temporary or permanent?