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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 Support Group.

dayscue | @dayscue | Oct 19, 2022

I am new to group but have had my ileostomy since December of 2003. Mine was an emergency procedure after finding out that I had thousands of polyps and some that were 9cm. Finally found out why I was having so much back pain from the pressure of those pesky polyps. FAP they said. My large intestine was removed and one foot of small intestine (to form the j-pouch) all at one time. It took about 2 weeks in the hospital and then maybe a month and a half at home. For that time at home while healing, I felt like it didn't want to live like this because there was a lot of pain and wondering about the quality of life in the future. I have had a few more times in the hospital with complications, but have managed to live a pretty normal life. You learn to control what you eat to manage your visits to the bathroom.
Every day is a learning experience and an experiment. I have recently discovered that I am highly sensitive to preservatives, but actually have been all along. I would swell up internally and have to go to ER. I thought it was an obstruction or something but they never saw anything. Now I know that what I ate the day or two before, was the cause of the swelling. Stay away from processed meats, grapes, wine, gelatin and so many foods that could cause your intestines to swell shut.
I want everyone to know that I am greatful for the j-pouch and the extended life that I have had because of it. I had great Doctors and love the life I have. I still work at 65 now and plan to enjoy retirement in a year. Plan to fish, garden and volunteer the rest of my life.

REPLY
3 replies
Terriebikes | @bicycle3 | Oct 19, 2022
In reply to @dayscue "I am new to group but have had my ileostomy since December of 2003. Mine was..." + (show)
@dayscue

I am new to group but have had my ileostomy since December of 2003. Mine was an emergency procedure after finding out that I had thousands of polyps and some that were 9cm. Finally found out why I was having so much back pain from the pressure of those pesky polyps. FAP they said. My large intestine was removed and one foot of small intestine (to form the j-pouch) all at one time. It took about 2 weeks in the hospital and then maybe a month and a half at home. For that time at home while healing, I felt like it didn't want to live like this because there was a lot of pain and wondering about the quality of life in the future. I have had a few more times in the hospital with complications, but have managed to live a pretty normal life. You learn to control what you eat to manage your visits to the bathroom.
Every day is a learning experience and an experiment. I have recently discovered that I am highly sensitive to preservatives, but actually have been all along. I would swell up internally and have to go to ER. I thought it was an obstruction or something but they never saw anything. Now I know that what I ate the day or two before, was the cause of the swelling. Stay away from processed meats, grapes, wine, gelatin and so many foods that could cause your intestines to swell shut.
I want everyone to know that I am greatful for the j-pouch and the extended life that I have had because of it. I had great Doctors and love the life I have. I still work at 65 now and plan to enjoy retirement in a year. Plan to fish, garden and volunteer the rest of my life.

Jump to this post

swimming?

REPLY
dayscue | @dayscue | Oct 20, 2022
In reply to @bicycle3 "swimming with the bag?" + (show)
@bicycle3

swimming with the bag?

Jump to this post

My bag is internal. My daughter had a bag at first and she never went swimming with it.

REPLY
Moderator
Colleen Young, Connect Director | @colleenyoung | Oct 29, 2022
In reply to @dayscue "I am new to group but have had my ileostomy since December of 2003. Mine was..." + (show)
@dayscue

I am new to group but have had my ileostomy since December of 2003. Mine was an emergency procedure after finding out that I had thousands of polyps and some that were 9cm. Finally found out why I was having so much back pain from the pressure of those pesky polyps. FAP they said. My large intestine was removed and one foot of small intestine (to form the j-pouch) all at one time. It took about 2 weeks in the hospital and then maybe a month and a half at home. For that time at home while healing, I felt like it didn't want to live like this because there was a lot of pain and wondering about the quality of life in the future. I have had a few more times in the hospital with complications, but have managed to live a pretty normal life. You learn to control what you eat to manage your visits to the bathroom.
Every day is a learning experience and an experiment. I have recently discovered that I am highly sensitive to preservatives, but actually have been all along. I would swell up internally and have to go to ER. I thought it was an obstruction or something but they never saw anything. Now I know that what I ate the day or two before, was the cause of the swelling. Stay away from processed meats, grapes, wine, gelatin and so many foods that could cause your intestines to swell shut.
I want everyone to know that I am greatful for the j-pouch and the extended life that I have had because of it. I had great Doctors and love the life I have. I still work at 65 now and plan to enjoy retirement in a year. Plan to fish, garden and volunteer the rest of my life.

Jump to this post

Welcome @dayscue. Your experience and gained knowledge living almost 20 years with an ileostomy will be very welcome to guide newer ostomates.
If you were talking to your 2003 self, what tips or encouragement would you offer to your pre-ostomy you?

REPLY
Moderator
Colleen Young, Connect Director | @colleenyoung | Oct 29, 2022
In reply to @bicycle3 "swimming with the bag?" + (show)
@bicycle3

swimming with the bag?

Jump to this post

@bicycle3, you might be interested in the tips the @patdame got in this discussion about swimming with an ostomy:
- Swimming with ostomy: Any recommendations? https://connect.mayoclinic.org/discussion/swimming-with-ostomy/

From your username, am I correct in assuming you like to cycle and in general to be physically active?

REPLY
annewithane | @annewithane | Oct 29, 2022
In reply to @dayscue "I am new to group but have had my ileostomy since December of 2003. Mine was..." + (show)
@dayscue

I am new to group but have had my ileostomy since December of 2003. Mine was an emergency procedure after finding out that I had thousands of polyps and some that were 9cm. Finally found out why I was having so much back pain from the pressure of those pesky polyps. FAP they said. My large intestine was removed and one foot of small intestine (to form the j-pouch) all at one time. It took about 2 weeks in the hospital and then maybe a month and a half at home. For that time at home while healing, I felt like it didn't want to live like this because there was a lot of pain and wondering about the quality of life in the future. I have had a few more times in the hospital with complications, but have managed to live a pretty normal life. You learn to control what you eat to manage your visits to the bathroom.
Every day is a learning experience and an experiment. I have recently discovered that I am highly sensitive to preservatives, but actually have been all along. I would swell up internally and have to go to ER. I thought it was an obstruction or something but they never saw anything. Now I know that what I ate the day or two before, was the cause of the swelling. Stay away from processed meats, grapes, wine, gelatin and so many foods that could cause your intestines to swell shut.
I want everyone to know that I am greatful for the j-pouch and the extended life that I have had because of it. I had great Doctors and love the life I have. I still work at 65 now and plan to enjoy retirement in a year. Plan to fish, garden and volunteer the rest of my life.

Jump to this post

Thank you for sharing your experiences, dayscue - very much appreciated🙂

REPLY
pjdav256 | @pjdav256 | Oct 30, 2022
In reply to @bicycle3 "swimming with the bag?" + (show)
@bicycle3

swimming with the bag?

Jump to this post

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

REPLY
2 replies
Moderator
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)
@pjdav256

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

Jump to this post

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

REPLY
1 reply
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)
@colleenyoung

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

Jump to this post

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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