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.

jeannebab | @jeannebab | Jul 19, 2023

In reply to @kayhy "Did you have any reaction to the adhesive?" + (show)

Do you mean the adhesive on the skin barrier (that the bag attaches to)?

rnnh | @rnnh | Jul 21, 2023

I am about to undergo the surgery. The doctor is so pessimistic. What is life really like? I picture it being better.

chelley25 | @chelley25 | Jul 22, 2023

In reply to @rnnh "I am about to undergo the surgery. The doctor is so pessimistic. What is life really..." + (show)

After 20 years of having IBS-D, then ulcerative colitis, diverticulitis, a blocking stricture, I had a Sigmoid resection. One year later, my entire colon was all precancerous. I was 69 then. I opted for the drastic Colonectomy with an Ileostomy. One surgery & done.
That was 13 months ago, it very saddening when you see the Ileostomy for the 1st time, so foreign looking, and ugly.
But she is now my friend!
It is an accepting & learning process. It is my life-line. It’s difficult, but you can do it! You will have to learn to chew, chew, & chew some more! Otherwise it can be very painful when things pass through. It’s going to change sizes, as you heal, so you must learn to measure & cut your wafers as accurately as you can. Get yourself a stoma nurse, you will need her or him along your journey, they will teach you so much on how to care for your stoma. Attitude accounts for your success, try to stay positive, look at it like a blessing. I do, I’m alive & not dealing with Colon Cancer! This is a good thing.

rnnh | @rnnh | Jul 22, 2023

Thank you so much for your reply. Your operation was very successful and gives alot of positivity to think on.

mepconnect | @mepconnect | Aug 2, 2023

Hi. I have had my ileostomy for 34yrs.

patriotspride | @patriotspride | Aug 3, 2023

In reply to @chelley25 "After 20 years of having IBS-D, then ulcerative colitis, diverticulitis, a blocking stricture, I had a..." + (show)

Very caring and helpful to anyone who faces these tough life decisions

kenc | @kenc | Aug 3, 2023

In reply to @mepconnect "Hi. I have had my ileostomy for 34yrs." + (show)

Are you experiencing pain, etc. resulting from the surgery?

mepconnect | @mepconnect | Aug 3, 2023

Not at all. And I’m able to do anything I want. Swim, hike, travel…
The first year was difficult. My skin needed to adjust to having the wafer on it. A good ostomy nurse is essential.

susan_f | @susanbfoster | Aug 7, 2023

In reply to @rnnh "I am about to undergo the surgery. The doctor is so pessimistic. What is life really..." + (show)

I have had my ostomy for 20 years now as a result of Crohn's Disease. I hike, scuba dive, swim on a Masters Swim team, go to the gym, eat at restaurants, and just... normal life.

It takes a while to adapt and heal up, and different people have different experiences in how long it takes. Be patient, make sure your talk with the ostomy nurses about how to manage the ostomy on your own, and what to do if you have problems, they are fabulous resources.

My life was so much better after the ostomy. I also had a lot of grief that I "lost" the battle to keep my colon. It was a very mixed feeling...