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Ostomy: Adapting to life after colostomy, ileostomy or urostomy

Posted by @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?

REPLY

Hi @1228angela @nythriver @manveen @dawn_giacabazi @hatethis @soul and @kidbjp, I’d like to invite you to this new discussion group about ostomy. People who have recently had an ostomy have many questions. I’m hoping that you can share your experiences to help us get the conversation started and make people feel welcome talking about adapting to life after a colostomy, ileostomy or urostomy. Share your story.

I have had an ileostomy since 1967. Cause, Ulcerative Colitis. Lots of positive changes and developments in surgery, care and appliances since then. When I had my surgery there was very little help available. Appliances were terrible and ostomy care was practically non-existent. Todays ostomy appliance and equipment suppliers are more than willing to help new and old ostomy patients. In fact many of them have ostomy nurses on staff to help with treatment and questions. What a difference 50 years makes.

Welcome to Connect, @hanseron,

Thank you for sharing your insights; we’re so glad you’ve joined this group. I can only imagine the worries and questions you must have had, adapting to life after the ileostomy.

@hanseron, I’ve read that there are several types of Ileostomies; may I ask what type of of procedure you had to undergo? What was your biggest worry, when you got the ileostomy?

@kanaazpereira

Welcome to Connect, @hanseron,

Thank you for sharing your insights; we’re so glad you’ve joined this group. I can only imagine the worries and questions you must have had, adapting to life after the ileostomy.

@hanseron, I’ve read that there are several types of Ileostomies; may I ask what type of of procedure you had to undergo? What was your biggest worry, when you got the ileostomy?

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Total Colectomy.  The attack happened so fast that I didn’t have time to worry.  I was rushed to the hospital and surgery was performed within hours.  Luckily, I had a great GI surgeon who had previously performed the operation successfully.

 I was in the hospital for about 3-4 weeks and at home recovering for at least a month and a half.

 

@colleenyoung

Hi @1228angela @nythriver @manveen @dawn_giacabazi @hatethis @soul and @kidbjp, I’d like to invite you to this new discussion group about ostomy. People who have recently had an ostomy have many questions. I’m hoping that you can share your experiences to help us get the conversation started and make people feel welcome talking about adapting to life after a colostomy, ileostomy or urostomy. Share your story.

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Hi Colleen, hope you are well. it has been ages but I feel like just yesterday what happened to my mother. My mother had rectum cancer and she had a critical long surgery using laparoscopic early (March) 2016. The first surgery took for 7 hours. She was living with colostomy for a few weeks carrying bag. I and my sis were the care givers. Learning to clean the bag for my mother. Learning to attach when the bag was broken. We had gone through up and down depending on how she was doing. But we made it through her second surgery Completion and then no need to bother with the bag. We were able to find the good doctor from Thailand who came to practice at Mayo clinic in the United States. The doctor and the team are on top of everything. They work as a team like Mayo clinic doctors. The knowledge, the advanced medical equipments and great experience. We have been very fortunate. My sis and I took turn taking care of my mother during her surgery and her stay at the hospital for 3 weeks. She is now recovering well from the rectal cancer but early this year my mother had entire body scan and the doctors found nothing. Good news and great report. We had a good time, a bad time and challenging time together but we have hope and believe in our faith that my mother would be getting better. So I encourage for those care givers, keep up with the hope and strength, positive, a lot of care, patience, love, kindness, support and follow up. There are the qualification of the caregiver. We are grateful to Mayo Clinic for having and for accepting Oversea doctor to come and practice with Mayo clinic Doctor. Our thanks goes to Mayo clinic for saving so many people life including my mother. It is nice to be with you on line and kindly share with every care givers. It is appreciated. Thank you. Best to you and everyone. Soul

@colleenyoung

Hi @1228angela @nythriver @manveen @dawn_giacabazi @hatethis @soul and @kidbjp, I’d like to invite you to this new discussion group about ostomy. People who have recently had an ostomy have many questions. I’m hoping that you can share your experiences to help us get the conversation started and make people feel welcome talking about adapting to life after a colostomy, ileostomy or urostomy. Share your story.

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@soul

What a wonderful report – I’m so glad that you shared it with us!

Teresa

@colleenyoung

Hi @1228angela @nythriver @manveen @dawn_giacabazi @hatethis @soul and @kidbjp, I’d like to invite you to this new discussion group about ostomy. People who have recently had an ostomy have many questions. I’m hoping that you can share your experiences to help us get the conversation started and make people feel welcome talking about adapting to life after a colostomy, ileostomy or urostomy. Share your story.

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Good to hear from you @soul. What a remarkable outcome for your mom and your family. If I recall correctly, at the time of diagnosis, your mother was very nervous about having surgery.

At the time of the first surgery, did you know that the colostomy was going to be temporary? Did you learn any tips about colostomy care that you might like to share?

@colleenyoung

Hi @1228angela @nythriver @manveen @dawn_giacabazi @hatethis @soul and @kidbjp, I’d like to invite you to this new discussion group about ostomy. People who have recently had an ostomy have many questions. I’m hoping that you can share your experiences to help us get the conversation started and make people feel welcome talking about adapting to life after a colostomy, ileostomy or urostomy. Share your story.

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It is true, Colleen. My mother was nervous and did not want the surgery. It was a lot of discussion back and forth with the doctor and my Mother had confirmed with the doctor that the colostomy care would be a temporary and decided the date for the second surgery to remove the bag and close the stoma. It was only 10 days Difference between the first and second surgery. During colostomy care, the hospital provided the 2 specialist for the colostomy care. They came to clean the bag for 5 days and taught us how to change the bag and clean. So my son s and I had to work on it. We learned so much from it. One night, my Mother bag was broken and we had to struggle to attach the new bag. But if you have learned from specialist and learned the technic how to cut the bag, it is easy.
When I recalled the time we were there it is a rewarding experience since my mother is recovering well. It is truly blessings.

@colleenyoung

Hi @1228angela @nythriver @manveen @dawn_giacabazi @hatethis @soul and @kidbjp, I’d like to invite you to this new discussion group about ostomy. People who have recently had an ostomy have many questions. I’m hoping that you can share your experiences to help us get the conversation started and make people feel welcome talking about adapting to life after a colostomy, ileostomy or urostomy. Share your story.

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Dear Teresa, I am glad to share with everyone. Sharing experience is the best we can improve a better support and care to love one since we are the care givers. Thank you.

Deneenknox

Hi @deneenknox,

I see that you posted an empty message; did you mean to post something more, or perhaps reply to a member’s post?
If you would like more information on how to use Mayo Clinic Connect, you can find it here: https://connect.mayoclinic.org/get-started-on-connect/

@deneenknox, what brings you to this discussion about Ostomy?

When I saw colostomy, ileostomy, urostomy on Mayo Clinic Digestive Health I was so happy. I have so much I need to know and I can share some things. I then had this feeling that I was needed in the bathroom. I am not sure what can be worst than a full bag/pouch/appliance of liquid and air. I had to clean the front of toilet, the floor, the clamp, my hands, and change my clothes. At least I did not hit my shoes. I know we are to empty our bags when it is a third full, but I have not figured out when the bag is 1/3 full, when I have diarrhea my bag goes from empty to full in a matter of minutes.

My ostomy is the results of radiation I had on my lower abdomen over 30 years ago. It took that long for my sigmoid to die. I now have an ostomy, for life, and a third of my GI track is gone. I have not found anyone, yet, who has had lymphoma, with their sigmoid killed from radiation wearing a bag over their stoma.

Learning to clean and replace your bag, once you get home from the hospital, can be an experience, and one not for sissies. Poop is your friend. It is the food you put in your mouth that the body could not use. When we forget it is food we may become fearful of poop and do not want to look at it or willing to have it get on our hands.

What to eat and what not to eat is my biggest problem. With a third of my GI track gone I have to take lots of meds to make up for what my body cannot get out of the food I eat. I do eat a balanced diet and try new things. The diarrhea I am having now could be a reaction to a new med I am taking, but it could be from the new food I am trying out. I eat mostly veggies. I do have some chicken because I am unable to eat beans. Plain Greek Yogurt is my go-to food. Cheese is one of my other go-to. Ice cream is my only bad food, it takes a month for me to go through a quart. Canned fruit with yogurt is much better than fruit in your yogurt. I live by myself so I do not have to cook meals, any suggestions in what to eat would be helpful.

mlmcg

Hi @mlmcg,

Thank you so much for sharing your story; I’m certain that Connect members in this group will appreciate your insights too.

You may wish to view these Mayo Clinic webpages which have some great information related to ostomy and diet:

http://www.mayoclinic.org/healthy-lifestyle/nutrition-and-healthy-eating/expert-blog/ileostomy-diet/bgp-20056239
http://www.mayoclinic.org/diseases-conditions/colon-cancer/in-depth/ostomy/art-20045825

You can also listen to this Mayo Clinic podcast about ostomy misconceptions: https://newsnetwork.mayoclinic.org/discussion/ostomy-misconceptions/

Although this type of colostomy may be different, I’m tagging @dotty, who wrote about sigmoid colostomy with a Hartmanns Pouch; I hope she joins this discussion with her insights as well.

@kanaazpereira

Hi @mlmcg,

Thank you so much for sharing your story; I’m certain that Connect members in this group will appreciate your insights too.

You may wish to view these Mayo Clinic webpages which have some great information related to ostomy and diet:

http://www.mayoclinic.org/healthy-lifestyle/nutrition-and-healthy-eating/expert-blog/ileostomy-diet/bgp-20056239
http://www.mayoclinic.org/diseases-conditions/colon-cancer/in-depth/ostomy/art-20045825

You can also listen to this Mayo Clinic podcast about ostomy misconceptions: https://newsnetwork.mayoclinic.org/discussion/ostomy-misconceptions/

Although this type of colostomy may be different, I’m tagging @dotty, who wrote about sigmoid colostomy with a Hartmanns Pouch; I hope she joins this discussion with her insights as well.

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Thank you, most of the information I already knew or read on Mayo Clinic webpages. I had my surgery 3 years ago and have a thick file folder with info on ostomies, which keeps getting thicker.
mlmcg

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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