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.

a009507 | @a009507 | Sep 20, 2023

In reply to @ggarrepy "Gail Garrepy here. I have had my Urostomy now for six months. I also have a..." + (show)

Where did you order your stealth belt? Thanks.

harryd | @harryd | Sep 20, 2023

I am new here so this is my first post. I had a total colostomy 2 weeks ago today (ulcerative colitis) and I feel better than I had in months, I am able to get out and walk several times a day and almost back up to 10,000 steps per day and go for rides in the country looking for wildlife to photograph with my wife. Truly glad I had the surgery, it is giving me my life back, I had 4 months this year I could not leave my house because I was having 30 or more sudden urge BM's per day, now I am free again.

ggarrepy | @ggarrepy | Sep 20, 2023

In reply to @a009507 "Where did you order your stealth belt? Thanks." + (show)

I found it on stealthbelt.com. Great site, and I think they offer 15% off your first order. I did that lol
It works great under a swim suit or shorts where you want to just show a black belt. It gives your appliance good support when you’re active.

ggarrepy | @ggarrepy | Sep 20, 2023

In reply to @harryd "I am new here so this is my first post. I had a total colostomy 2..." + (show)

That is awesome! Good for you! I had 22 high grade tumors in my bladder so I was also pretty miserable and confined. Now I’m free to do whatever I want to do. So onward and upward huh?

a009507 | @a009507 | Sep 20, 2023

In reply to @ggarrepy "I found it on stealthbelt.com. Great site, and I think they offer 15% off your first..." + (show)

Thank you!

cjay | @cjay | Sep 21, 2023

In reply to @cyngirl1 "Haven't heard of Platypus Bottle. Will check. Emptying away from home is challenging. My output is..." + (show)

@cyngirl1
I know you posted this a few weeks ago, but if your output is still really loose, or even occasionally, I’ve found these work great. The plus is I don’t have to take a pill or drink anything. You just drop one little packet into your emptied pouch. I found it online. Good luck!

morironman | @morironman | Sep 25, 2023

In reply to @kayhy "Did you have any reaction to the adhesive?" + (show)

No reaction

morironman | @morironman | Sep 25, 2023

Ileostomy in August ‘23.
Doing great so far.
No more incontinence and all the infection was removed and treated with a month of antibiotics.
They taught me well at Mayo Rochester. I didn’t need a home nurse for the ostomy or the administration of drugs thru a picc line.
Doctor Boyd Viers

mswilde | @mswilde | Sep 26, 2023

👋!! I’ve just joined this group but I’ve had my ileostomy for 5 years now. I’m only here because I’ve never known something like this existed and I’m tired of talking to myself about the issues I face but only because my PCP doesn’t seem to know what to say or where to direct me. I’m seeing a new doctor in a couple of weeks who specializes in chronic issues so I’m crossing my fingers, toes and eyes.
I’m 67 and have been retired since my surgery but not because of it. I was just at a juncture in my life where I could, so I did.
If everything goes somewhat to plan over the winter months I hope to go back to work in the spring. Being retired has become boring.
I’m wanting to lose weight, the meds that I take are adding to my weight gain and having an ileostomy is difficult because my body has to fight for nutrients etc… I truly feel like I’m losing in a game of tug of war and I’m looking for help, help that I hope I can find with a new doctor.
I also know I will have my ileostomy forever along with my picc line and it didn’t cause me much grief except when I first woke up from the surgery and the first couple of months but when I could finally accept that I’d be dead without them it made it easier to deal with. I know how hard it is to deal with the whole situation especially when it’s supposed to be temporary, which mine was, and then became permanent… I just have to remind myself of that fact from time to time when I feel down about it.