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.

Colleen Young, Connect Director | @colleenyoung | Sep 19, 2023

In reply to @a009507 "I had a colostomy on 6/1/2023. I’m doing fairly well. The difficulties I’m having are constipation..." + (show)

@a009507, I wanted to check in to see how you are doing. Have you managed to find a way to make the pouch more comfortable? Have you found a stool softener that helps?

ggarrepy | @ggarrepy | Sep 6, 2023

Gail Garrepy here. I have had my Urostomy now for six months. I also have a left ureteral stent due to a blockage in that ureter. I will need that forever. It will be changed out every few months. It drains into my urostomy pouch. I’ve adjusted quite well to it all. I bought a stealth belt and I’m back to my aqua classes and finally getting my strength back.

a009507 | @a009507 | Sep 5, 2023

I had a colostomy on 6/1/2023. I’m doing fairly well. The difficulties I’m having are constipation and pancaking. Living in an independent living facility so am limited by food choices and taste changes from radiation and chemo following dx of throat cancer. Am trying stool softeners that I don’t think is working very well. Other issue is the ostomy pouch and adhesive laying on stitches from surgery. I’m told it may take 6-9 months before they dissolve. The pressure of the bag is enough to cause the pouch to be uncomfortable. Has anyone dealt with that issue? Thanks. Nancy

cyngirl1 | @cyngirl1 | Sep 5, 2023

In reply to @fbt217 "The Platypus bottle folds flat and has sports cap with a nozzle. It’s easy to carry..." + (show)

Thanks. Followed a suggestion of standing to empty bag. Much easier. The output on toilet easier to clean.. Need to add clip to my bag for holding dress.
Smiles
cyngirl

Marco | @marco789 | Sep 4, 2023

It looks like my ileostomy will soon become a permanent part of my identity. Going from a loop to an end with total proctocolectomy at to remove the unhealthy parts. Crohn's continues to attack and we continue to fight back, and every battle has its scars. I am so thankful that my friends, my family and Mayo Clinic are with me every step of the way 🙏🙏🙏

Colleen Young, Connect Director | @colleenyoung | Sep 3, 2023

In reply to @angievaz29 "Definitely has been challenging for me and no I haven’t but I’m not really open about..." + (show)

Did you have to ask for any accommodations at work?

angievaz29 | @angievaz29 | Sep 3, 2023

In reply to @colleenyoung "@angievaz29, you've been through a lot. It sounds like you've faced many different emotions and have..." + (show)

Definitely has been challenging for me and no I haven’t but I’m not really open about publicly and work was alright

Colleen Young, Connect Director | @colleenyoung | Sep 3, 2023

In reply to @angievaz29 "Hello, I’m Angela I had my first ileostomy inlay 15 because I have familia adenomatous polyposis..." + (show)

@angievaz29, you've been through a lot. It sounds like you've faced many different emotions and have arrived at a point of acceptance and embracing life. Have you been able to connect with anyone else in your age group who lives with an ostomy?

I hope you're enjoying the long weekend. How is the return to work going?

cyngirl1 | @cyngirl1 | Aug 30, 2023

In reply to @fbt217 "I wasn’t able to have a reversible. As far returning to a normal life, that’s possible..." + (show)

Haven't heard of Platypus Bottle. Will check. Emptying away from home is challenging. My output is like diarrhea all the time. Need experiences of others. My ileostomy as 3 yrs ago due to dismobility.
Thanks for sharing.
Cynthia

kadet | @kadet | Aug 29, 2023

In reply to @fbt217 "I don’t mind talking about my experiences if it helps someone. I’m a naturally inquisitive person..." + (show)

Me too. I worked for 37 years as a dental hygienist in Pa before moving to fl where I drive a school bus. I told my patients that an informed patient is the best kind of patient.
I’m interesting in knowing when patients have reversals from an ileostomy what are the pros and cons. I want to understand all the possible cons before I get it reversed. Abc then have to do the ileostomy again.