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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.

Moderator
Colleen Young, Connect Director | @colleenyoung | Feb 11, 2023
In reply to @racing212 "Hi. I'm going to mayo clinic on February 28th and on March 2nd have a mass..." + (show)
@racing212

Hi. I'm going to mayo clinic on February 28th and on March 2nd have a mass removed from my right kidney and the Dr thinks that it is cancer. How do I cope with that. Not knowing what to do if I should have it removed or let it go. I've had cancer before and not sure if I should fight it it or not

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@racing212, I can imagine you're scared. I know you've been through a lot. Sending you strength for the upcoming appointments and surgery. You are in good hands at Mayo Clinic (as you know).

Here is the discussion where you were connecting with others about kidney cancer and follow up:
- Re: My Scan Results for followup of Renal Cell Carcinoma https://connect.mayoclinic.org/discussion/re-scans/?pg=4#comment-282000

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racing212 | @racing212 | Feb 11, 2023

I am getting nervous. They are doing an ablation on my kidney.

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1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | Feb 12, 2023
In reply to @racing212 "I am getting nervous. They are doing an ablation on my kidney." + (show)
@racing212

I am getting nervous. They are doing an ablation on my kidney.

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When will they be doing the ablation, @racing212?

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carvar12 | @carvar12 | Apr 7, 2023
In reply to @hanseron "I have had an ileostomy since 1967. Cause, Ulcerative Colitis. Lots of positive changes and developments..." + (show)
@hanseron

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.

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Pfft! My son had surgery last wk and has an ileostomy, and nurses came by once "in patient" for pt edu, and now that he's discharge there's no support or help. I was trying to be proactive in getting things lined up for my lil guy, and here we are: tomorrow is day 5, and it needs to be changed, and theres no support from the hospital that did the surgery (no doctor, no nurse prac, no nurse, no appt for pt edu). They did the surgery, I left my son out in the dark and cold!

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2 replies
kimberbee | @kimberbee | May 2, 2023

Hi - I had emergency colon surgery on March 10 due to a blockage and now have an end colostomy. However, the mass in my colon is a recurrence of uterine cancer and have just begun chemo/immunotherapy. The plan is to reverse the colostomy after I finish chemo. I was lucky to have great colostomy education in the hospital and with home nursing care afterwards. But I'm hoping to get suggestions on the different colostomy supplies and clothing that is comfortable (i miss wearing jeans but the waist band hits right on top of my stoma)? Even with the security belt, the bag feels like it's dangling (pulling on the adhesive) and i'm constantly adjusting so I want to find ways to feel more secure. I also want rebuild up my physical strength/stamina and get back to being active through walking, etc. Over the past year, I've lost 70 pounds and then lost 15 more pounds because of the blockage and multiple hospitalizations so i'm really sensitive to gaining weight. On top of all this, I just lost my mom to pancreatic cancer (her funeral was this past Friday). It's just a brutally difficult time. So i really need to get back to being active both for my own emotional/physical health and well being as I face my own cancer and chemo side affects and for my dog who needs to be active as well. Thank you in advance!

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collenp | @collenp | May 3, 2023
In reply to @carvar12 "Pfft! My son had surgery last wk and has an ileostomy, and nurses came by once..." + (show)
@carvar12

Pfft! My son had surgery last wk and has an ileostomy, and nurses came by once "in patient" for pt edu, and now that he's discharge there's no support or help. I was trying to be proactive in getting things lined up for my lil guy, and here we are: tomorrow is day 5, and it needs to be changed, and theres no support from the hospital that did the surgery (no doctor, no nurse prac, no nurse, no appt for pt edu). They did the surgery, I left my son out in the dark and cold!

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I am so sorry to hear about this.
Do you live near a children's hospital.
Have your pediatrician write a referral if your insurance calls for it and contact the gastroenterology dept and request an appt.
Children's Hospital of Philadelphia Pennsylvania (CHOP) is verygood. My daughter had spinal surgery there when she was 14 years old.
Sending heartfelt prayers for your child.
Good Luck
Take care

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kenc | @kenc | May 3, 2023
In reply to @carvar12 "Pfft! My son had surgery last wk and has an ileostomy, and nurses came by once..." + (show)
@carvar12

Pfft! My son had surgery last wk and has an ileostomy, and nurses came by once "in patient" for pt edu, and now that he's discharge there's no support or help. I was trying to be proactive in getting things lined up for my lil guy, and here we are: tomorrow is day 5, and it needs to be changed, and theres no support from the hospital that did the surgery (no doctor, no nurse prac, no nurse, no appt for pt edu). They did the surgery, I left my son out in the dark and cold!

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Check to see if there is an ostomy support group in your area.

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morironman | @morironman | Jun 23, 2023

I'm going under for bladder removal and associated stoma.
How long in the hospital + - ?
How lasting is the pain til it's tolerable w/o drugs?
I live in Orygun and having surgery done in Rochester. Are there extra things I should know? I have a hotel lined up near St. Mary's. 🙂

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