Ostomy: Adapting to life after colostomy, ileostomy or urostomy

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?

Anal cancer 6 years ago! Chemo etc! Ileostomy! Reconnection failed! Now colostomy! It prolapsed to 5” year ago! Now not even an inch! Had blood clots in both lungs twice! They said I should be in the ground! Spouse of 40 years passes while I was having surgery! Don’t remember how I survived by myself in 2 story house! Now having back problems! Had rods put in for nothing! So much scar tissue in abdomen, had to go into back! Neuropathy in both feet! Nothing has worked! Joined senior citizens for lunch everyday! Also 2 years ago joined dating sites to keep me from going crazy! Lot of lonely people out there! Am 68!

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@wilcy

Anal cancer 6 years ago! Chemo etc! Ileostomy! Reconnection failed! Now colostomy! It prolapsed to 5” year ago! Now not even an inch! Had blood clots in both lungs twice! They said I should be in the ground! Spouse of 40 years passes while I was having surgery! Don’t remember how I survived by myself in 2 story house! Now having back problems! Had rods put in for nothing! So much scar tissue in abdomen, had to go into back! Neuropathy in both feet! Nothing has worked! Joined senior citizens for lunch everyday! Also 2 years ago joined dating sites to keep me from going crazy! Lot of lonely people out there! Am 68!

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Hello, @wilcy Whew! A lot going on with you. How long have you had your colostomy? Are you accustomed to it and keep it working? You sound like someone with lots of energy! Have you ever thought of putting your energy into volunteer work? I’ll bet a lot of groups would your your energy!

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@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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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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I had ureterosigmoidostomy for 69 years, from birth defect of bladder extrophy. No outside sign of this ostomy. Then Mayo R had big conference with me and concluded I needed 2 ostomies: colostomy, uroconduit & hartman’s pouch. Real decision-making occurred once Dr.Nelson and Dr. Frank got in there because previous records so old they had been destroyed.. I was allowed to receive Holy Communion just as I went in surgery- meant the world to me. They found all sorts of abnormal situations Came out after 8 hours with colostomy, uroconduit & hartman’s pouch. TODAY: 4 years of therapy 2x week. Depression, starts at reorganizing life and then restarting. NOW; care has become quicker with developed routine, still plan “what if “ leak in public, diet= 4 small meals, think and pray about them as git’s from God to offer up. Dislike activity limitations. Soooo grateful for Dr. Igor Frank , urologist & Dr.Connor Loftus, gastro for annual or emergency visits even though I live in Kansas. Airplane seatbelts hit right over stoma. Makes death not so scary and each good friend and laugh so appreciated. Husband in there with me for 43 yrs—-I do feel guilt over messing his life up. Can’t wear hernia belt because ostomies are at different levels and recessed stoma in uroconduit. A lot of stress, use a lot of resources to help me carry it. God just wanted me to crawl up on cross with him and be creative about helping others. I miss my husband’s touch in sexual way, just too fragile.

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Good morning, iIt only takes a story like yours and your bravery, for me to feel both grateful and humbled. It shows our desire to overcome and live a life given to us, even if it is challenging. Thank you for sharing your life on this site; hopefully, it will spark further conversation from others. I leave the advise givers to others who have lives closer to your struggles. I have been more fortunate in my colon journey. Take care virgo1952

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I am at a crossroads with a fistual (channel) connecting my bladder and colon just inside the rectum. Mayo R wants to take out bladder and colon and replace with two bags. just got over another bladder/kidney infection for last 5 days with antibiotics and get them every 3-4 months. very painful. am 73 this year and don't know if the surgery is right for me. sexual activity is still important to me/us. don't want to give that up but want to live. when at Mayo R in 2018, it didn't sound like my two providers have done both surgeries at same time plus reconstruction after taking out bladder and lots of colon. prostate radiation in the area from 2007 makes tissues in the area fragile. being pain free is important but so is quality of life. praying a lot. stay tuned as am still undecided.

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@hodagwi

I am at a crossroads with a fistual (channel) connecting my bladder and colon just inside the rectum. Mayo R wants to take out bladder and colon and replace with two bags. just got over another bladder/kidney infection for last 5 days with antibiotics and get them every 3-4 months. very painful. am 73 this year and don't know if the surgery is right for me. sexual activity is still important to me/us. don't want to give that up but want to live. when at Mayo R in 2018, it didn't sound like my two providers have done both surgeries at same time plus reconstruction after taking out bladder and lots of colon. prostate radiation in the area from 2007 makes tissues in the area fragile. being pain free is important but so is quality of life. praying a lot. stay tuned as am still undecided.

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Hello, @hodagwi . Sounds like you have some big decisions to make. Have the doctors given you any pros and cons for the surgery? Is it mainly to prevent any more kidney infections? Over time, kidney infections could cause you major problems and maybe destroy the kidney. If you don’t mind my asking, what was the original reason for the bladder-colon connection?

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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

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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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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@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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@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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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 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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@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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