1. < Ostomy & J-Pouch
Profile picture for coloncutter

Colostomy: I hate this thing!

Posted by coloncutter @coloncutter, Apr 24, 2025

Does anybody else think that having a colostomy bag is worse then spending time in prison. I hate this thing

Interested in more discussions like this? Go to the Ostomy & J-Pouch Support Group.

Profile picture for Susan F, Volunteer Mentor
Mentor
Susan F, Volunteer Mentor | @susanf8 | Apr 30 9:46am
In reply to @dgroves0430 "@rioa21 thank you so much! I'm a little lost when it comes to all the options..." + (show)
Profile picture for dgroves0430 @dgroves0430

@rioa21 thank you so much! I'm a little lost when it comes to all the options so I def appreciate you for being specific. At least I feel a little more educated when it comes to this. I'm just so nervous about how I'm going to handle everything.

Jump to this post

@dgroves0430 you are getting some great advice from folks with colostomies. One thing to keep in mind is that what kind of ostomy (colostomy, urostomy, ileostomy) a person has makes a difference for some things, like what kind of pouch. Colostomates can often use a closed end pouch, but someone with a urostomy would have one with a spigot, and someone with a ileostomy would need a drainable pouch. So you might hear some different things 🙂

REPLY
Profile picture for piki
piki | @piki | Apr 30 10:54am

I use Coloplast SensSura Mio 2-piece deep convex with Convatec's slim Eakin ring and Hollister 3 piece extenders. Also Skin Tac for maximum stick. And I generally change my apparatus every 7 to 14 days. I shower with the pouch off and clean and reuse the pouches. And I don't hate it...what I hate is the indwelling catheter. Ostomies are a walk in the park compared to catheters...

REPLY
Profile picture for ggarrepy
ggarrepy | @ggarrepy | May 1 2:02pm
In reply to @susanf8 "Welcome to Mayo Connect, @dgroves0430 ! And welcome to the club that no one wants to..." + (show)
Profile picture for Susan F, Volunteer Mentor @susanf8

Welcome to Mayo Connect, @dgroves0430 ! And welcome to the club that no one wants to join. I'm sure there will be folks along with colostomy specific advice, but for now, I have an ileostomy and I do a lot of travel, and I scuba dive, hike, cycle, swim, and work out in the gym. The Ostomy and J-Pouch blog has some ariticles that may help get you started.

We also have a virtual support group you can call into. Its run by one of the Mayo WOCN's and its a great place to ask questions. We meet on the first Tuesday of the month at 4pm Arizona Time.

The next meeting is Tue, May 5, 2026, 4:00pm to 6:00pm; I hope you can join us!

Join Zoom Meeting here
https://mchealth.zoom.us/j/99659580974
Meeting ID: 996 5958 0974
Passcode: Ostomy

Jump to this post

@susanf8
I'm 81 and I've had an ileostomy for three years now. I also had to have a nephro-ureteral stent catheter for my left kidney and luckily it is contained in my pouch so I can still do my aqua aerobics and whatever I want. I traveled to Portugal last year and did fine. Just have to keep an eye on where the bathrooms are and bring extra supplies.
It's an adjustment yes, but life can still go on okay. Don't let discouragement sneak in.

REPLY
Profile picture for rxjoey
rxjoey | @rxjoey | May 6 5:53am
In reply to @pilottd "I've had a colostomy bag for 2 years and don't consider it a prison at all...." + (show)
Profile picture for pilottd @pilottd

I've had a colostomy bag for 2 years and don't consider it a prison at all. It's a very minor inconvenience 85% of the time, a bit of an inconvenience 10% of the time and a hassle about 5% of the time. Life is 10% what happens to you and 90% how you respond to it.

If you're having leakage at night, you may want to try other products. I use the holister products and have only had 1 overnight leak. If you're filling up the bag overnight and that's causing the leakage, you may want to adjust your eating times so it fills up and can be emptied/changed before you go to bed, or just plan on getting up once/twice a night to empty it. All things that are relatively minor in the great scheme of life.

Jump to this post

@pilottd .. so true. The disease is long gone. I smiled
The day I left the hospital.
When I got the OK to return to life from my doctor, my wife took to Cancun as a reward. 33 years post op.
“ Rejoice & celebrate” your
New found health.
Be well my fellow patients

REPLY
Profile picture for ldonalty
ldonalty | @ldonalty | May 8 11:57am
In reply to @rioa21 "My colostomy has given me back my life! I was miserable before. All my time was..." + (show)
Profile picture for rioa21 @rioa21

My colostomy has given me back my life! I was miserable before. All my time was spent looking for a bathroom or being in one. I suffered horribly from fecal incontinence due to radiation treatment for anal cancer. I am extremely grateful that the option of having a colostomy even exists!

Jump to this post

@rioa21 I agree! You need to embrace it and enjoy life to the fullest everyday! I have had mine, for the second time, now permanently for 9 years. I had a temporary one when I was 20. Both times it saved my life and I am grateful every day. No one should ever be embarrassed or feel like they are in prison. If you are having leaks or skin irritation talk to your ostomy nurse. Leaks should not be frequent. Most people do not even know I have an ileostomy. Live it up my friends 💕

REPLY
Please sign in or register to post a reply.