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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 & J-Pouch Support Group.

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collenp | @collenp | Jan 30, 2023
In reply to @jimgeb "I have had State IV prostate cancer for 11 years but didn't need treatment for the..." + (show)
Profile picture for jimgeb @jimgeb

I have had State IV prostate cancer for 11 years but didn't need treatment for the first 5 years because of low PSA. Started Lupron followed by about 7 treatments of docetaxal over the past 6 years. However the prostate cancer has entered my rectum and I am now scheduled for Pluvicto this week. Now having bowel problems and don't see much chance it will help the bowel situation but maybe I'll try it anyway. Not much to lose. I'm 79 years old and have been pretty lucky with my quality of life over the last 11 years, except for losing my wife to cancer 4 years ago, and have made the decision not to have a colostomy bag when that becomes necessary.

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I send Heartfelt prayers to you. And I am very sorry for the loss of your wife. Do you have family or friends nearby to help you and spend time with you.
I pray for you to have strength and for your higher power to intercede on your behalf.
Take care

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jimgeb | @jimgeb | Jan 29, 2023
In reply to @mlmcg "Having any surgery when you are in good health is better than having emergency surgery, the..." + (show)
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Having any surgery when you are in good health is better than having emergency surgery, the recovery time is much faster. I had semi-emergency surgery, I was admitted Wednesday night, in surgery Friday morning. I don't remember Thursday, I was either knocked out by the doctors or so sick, I knew I was in good hands, that I don't remember all the test that they ran. Learning how to live with and emptying "2 bags" will require a more alert person who is willing to learn now to do new things. Bending over to pick something up off the floor will be a new experience. You have made changes in your life style, with the surgeries you have had, if you have the "2 bag surgery" you will be making more changes. If you have a support group you may want to discuss your concerns with when. They will either be at your side through it all or you may never see them again. We never know who our real friends are until we are faced with major adversities. I have more people there for me than I ever dreamed of.

Now is time to make the decision to step off that cliff. It could just be a small step down and a smooth path from there. Good luck.

mlmcg

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I have had State IV prostate cancer for 11 years but didn't need treatment for the first 5 years because of low PSA. Started Lupron followed by about 7 treatments of docetaxal over the past 6 years. However the prostate cancer has entered my rectum and I am now scheduled for Pluvicto this week. Now having bowel problems and don't see much chance it will help the bowel situation but maybe I'll try it anyway. Not much to lose. I'm 79 years old and have been pretty lucky with my quality of life over the last 11 years, except for losing my wife to cancer 4 years ago, and have made the decision not to have a colostomy bag when that becomes necessary.

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chuckking | @chuckking | Dec 16, 2022

I have bladder ostomy and just had a really bad infection that is finally under control. The doctor had a cat scan taken and shows the bottom half of the bladder clear. Since the infection has cleared up I canceled the the test as they were going directly through the bladder opening and the nurse and PA were okay with that. The doctor commented that the scan shows the wall thickening due to the ostomy. Can anyone tell me what the long term effect might be ?

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dolphingurl | @dolphingurl | Dec 13, 2022
In reply to @duckduck2020 "I had my ileostompy like last May in that time I went through adjustments but now..." + (show)
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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 !

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Don't lift. Don't over do it. Be really mindful.

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Terriebikes | @bicycle3 | Nov 9, 2022
In reply to @pjdav256 "Tankini with skirt style bottom. Everything dried on own and there is a belt like to..." + (show)
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Tankini with skirt style bottom. Everything dried on own and there is a belt like to keep bag close to body.
Hope this all helps!

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Thx

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pjdav256 | @pjdav256 | Nov 8, 2022
In reply to @bicycle3 "How did you dry your bag and keep it close to body while swimming? Women's swimsuit..." + (show)
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How did you dry your bag and keep it close to body while swimming?
Women's swimsuit style suggestions?

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Tankini with skirt style bottom. Everything dried on own and there is a belt like to keep bag close to body.
Hope this all helps!

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1 reply
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Terriebikes | @bicycle3 | Nov 7, 2022
In reply to @pjdav256 "I had a external pouch for 9 1/2 years and went swimming" + (show)
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I had a external pouch for 9 1/2 years and went swimming

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How did you dry your bag and keep it close to body while swimming?
Women's swimsuit style suggestions?

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1 reply
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pjdav256 | @pjdav256 | Oct 31, 2022
In reply to @colleenyoung "@pjdav256, what, if any, precautions did you have to take with swimming with an external pouch?" + (show)
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@pjdav256, what, if any, precautions did you have to take with swimming with an external pouch?

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Made sure my appliance was no more than a day old, otherwise nothing else. I never had any issues. I would suggest packing a backup just in case but with how they make appliances nowadays I’d not be worried. Enjoy!

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Colleen Young, Connect Director | @colleenyoung | Oct 31, 2022
In reply to @pjdav256 "I had a external pouch for 9 1/2 years and went swimming" + (show)
Profile picture for pjdav256 @pjdav256

I had a external pouch for 9 1/2 years and went swimming

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@pjdav256, what, if any, precautions did you have to take with swimming with an external pouch?

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