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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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bcstew | @bcstew | Mar 18, 2020

The posting on this Ostomy site all seem to be old ones. Is anyone still watching this site?

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engelee | @engelee | Mar 18, 2020

I love to go out lunch with my friends. However, there are 2 considerations: potential leak from urostomy and food restriction. The first requires some strategizing I can’t sit for long period of time in a straight chair so I may be the one to excuse myself. The 2nd doesn’t really count because I’m there for good conversation . I may have acceptable bowl of soup and I usually find something in appetizer to eat.

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engelee | @engelee | Mar 18, 2020
In reply to @becsbuddy "@engelee I certainly admire you for talking so openly about your health and helping others. I..." + (show)
Profile picture for Becky, Volunteer Mentor @becsbuddy

@engelee I certainly admire you for talking so openly about your health and helping others. I can understand that meals must be a problem. Is it possible for you to eat out with friends?
Have you read the posts by @hodagwi —he could certainly use some info from you

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Oh I do because I have wonderful friends. But usually instead of hamburger I just get meat , appetizers at high quality restaurants are pretty good. I go for the friendship more than food.

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Becky, Volunteer Mentor | @becsbuddy | Mar 18, 2020
In reply to @rwfliess "I see that this group isn't very active, currently. I had my ileostomy at Mayo in..." + (show)
Profile picture for rwfliess @rwfliess

I see that this group isn't very active, currently. I had my ileostomy at Mayo in January 2013. I am very happy with it. I haven't read all the posts above yet, but maybe they'll be something new for me to learn or contribute. Fingers crossed this thread becomes more active... I will definitely participate. I'd really like to help people not be scared.

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@rwfliess I certainly do hope that you will jump back in! There is always a need for your expertise!

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Becky, Volunteer Mentor | @becsbuddy | Mar 18, 2020
In reply to @engelee "I would be interested in having discussion from various viewpoints by those dear people who have..." + (show)
Profile picture for engelee @engelee

I would be interested in having discussion from various viewpoints by those dear people who have 2 ostomies. Do people find their activity limited, equipment difficult to manage, General fatigue. I have 2 ostomies and a Hartman pouch (for 5 years). You can read my profile to save time and space for how they came about, but an ostomy has been with me all my life. Today with 2 external ones , I am not worse off than any of you, but can’t bend over hardly at all ( maintain with no loosening) and at times, feel like I just have a bunch of plastic on my belly ( I miss a smooth abdomen). My diet is very restricted—-no sugar, all refined grain, 4 small meals per day etc. etc.. Sometimes (rarely) I could just scream, but think of my faith. Besides my darling husband , my doctors;Igor Frank, Connor Loftus are the core of my well-being. I go to Mayo R every year . Two ostomies is not the end of the world, but ,sometimes it’s hard to see over the horizon.

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@engelee I certainly admire you for talking so openly about your health and helping others. I can understand that meals must be a problem. Is it possible for you to eat out with friends?
Have you read the posts by @hodagwi —he could certainly use some info from you

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engelee | @engelee | Mar 17, 2020

I would be interested in having discussion from various viewpoints by those dear people who have 2 ostomies. Do people find their activity limited, equipment difficult to manage, General fatigue. I have 2 ostomies and a Hartman pouch (for 5 years). You can read my profile to save time and space for how they came about, but an ostomy has been with me all my life. Today with 2 external ones , I am not worse off than any of you, but can’t bend over hardly at all ( maintain with no loosening) and at times, feel like I just have a bunch of plastic on my belly ( I miss a smooth abdomen). My diet is very restricted—-no sugar, all refined grain, 4 small meals per day etc. etc.. Sometimes (rarely) I could just scream, but think of my faith. Besides my darling husband , my doctors;Igor Frank, Connor Loftus are the core of my well-being. I go to Mayo R every year . Two ostomies is not the end of the world, but ,sometimes it’s hard to see over the horizon.

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engelee | @engelee | Mar 16, 2020
In reply to @rwfliess "I see that this group isn't very active, currently. I had my ileostomy at Mayo in..." + (show)
Profile picture for rwfliess @rwfliess

I see that this group isn't very active, currently. I had my ileostomy at Mayo in January 2013. I am very happy with it. I haven't read all the posts above yet, but maybe they'll be something new for me to learn or contribute. Fingers crossed this thread becomes more active... I will definitely participate. I'd really like to help people not be scared.

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Well, I wouldn’t say I’m “happy” with 2 ostomies and hartman’s pouch, but grateful for ongoing access to my MDs at Mayo R and continually work on adapting and readapting with therapist. My prayer life and faith in God’s will helps. The downside is limited activity, uneven stoma prevent hernia belt- even worked directly with CEO of Nu-Hope to design belt and couldn’t come up with anything. It affects sense of femininity, despite consoling husband. Eileen Fischer dresses and clothes made for ostomies.

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Colleen Young, Connect Director | @colleenyoung | Mar 15, 2020
In reply to @kowalski "I am fighting getting a colostomy bag. CTCA uses a system called Y90. Implanted radioactive pellets..." + (show)
Profile picture for kowalski @kowalski

I am fighting getting a colostomy bag. CTCA uses a system called Y90. Implanted radioactive pellets implanted in the tumor. My tumor is on the anus, so surgery to remove it is out of the question. Hopefully, I am a good candidate for this. I am, was very active. The bag would put a damper on my life style. I know people have them and prosper. But it scares the poop out of me. Hope God as my co-pilot will find an alternative to the bag.

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@kowalski, I can understand your concerns and trepidation about getting a colostomy. In addition to @engelee's encouraging life story, I'd like to invite @dragonass and @mlmcg to also share their thoughts on living an active life with a colostomy.

You may also be interested in the stories shared in the ostomy blog:
- Living with an Ostomy https://connect.mayoclinic.org/page/living-with-an-ostomy/

Kowalski, what is your primary concern about having a colostomy bag?

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hodagwi | @hodagwi | Mar 15, 2020

overall health is good. no pills at all. cholesterol is ok. sugar is ok. BP is fine. a little overweight. wife has COPD and is on oxygen and meds 24/7 so of limited help. I like talking to ostomy nurse and will check with hospital to see who is around. thanks Becky for comments.

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Becky, Volunteer Mentor | @becsbuddy | Mar 15, 2020
In reply to @hodagwi "2005 prostate cancer radiation through those tissues weakened them. doctors don't know why the connection was..." + (show)
Profile picture for hodagwi @hodagwi

2005 prostate cancer radiation through those tissues weakened them. doctors don't know why the connection was made. all the doctors say to have the surgery as they have for the past 3 years for colon and bladder. yes, it would prevent kidney infections I am told since will keep the solids and liquids separate but am told that could still have infections through the stoma. I am not getting any younger for about an 8 hour surgery and long recovery so my kids say to do it but they are not around to take care of me. this has been ongoing and I am part of an ostomy support group so talk to them monthly about how they are doing and issues in have one or the other. hard to find someone that has both bags.

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@hodagwi Your doctors may delay the decision about surgery because of the covid-19 situation we are currently in, but that gives you more time to research and talk to people. I’ve come up with some things for you to think about.
1. How is your overall health? 2. Can one of your children come to be involved in discussions with doctors? 3. Will your wife be able to help? 4. Have you spoken to an ostomy nurse to discuss all of this and your concerns? They specialize in stomas and their care. 5. Can you easily manage the stoma you have now (if you have one)? 6. What changes in physical activity will you have in the short/long term? Can you live with these limitations? 7. Could you and your wife use some short term help? The surgery and your rehab will be very hard on her also. 8. Can your doctors recommend anyone who has had this surgery that you could talk to?
My sisters and I had to do this for our elderly mom when she got bladder cancer. And then again when she fractured her pelvis. I hope this helps a little. Becky

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