Ostomy: Adapting to life after colostomy, ileostomy or urostomy

@kowalski, I can understand your concerns and trepidation about getting a colostomy. In addition to @engelee's encouraging life story, I'd like to invite @dragonass and @mlmcg to also share their thoughts on living an active life with a colostomy.

You may also be interested in the stories shared in the ostomy blog:
- Living with an Ostomy https://connect.mayoclinic.org/page/living-with-an-ostomy/

Kowalski, what is your primary concern about having a colostomy bag?

Well, I wouldn’t say I’m “happy” with 2 ostomies and hartman’s pouch, but grateful for ongoing access to my MDs at Mayo R and continually work on adapting and readapting with therapist. My prayer life and faith in God’s will helps. The downside is limited activity, uneven stoma prevent hernia belt- even worked directly with CEO of Nu-Hope to design belt and couldn’t come up with anything. It affects sense of femininity, despite consoling husband. Eileen Fischer dresses and clothes made for ostomies.

I would be interested in having discussion from various viewpoints by those dear people who have 2 ostomies. Do people find their activity limited, equipment difficult to manage, General fatigue. I have 2 ostomies and a Hartman pouch (for 5 years). You can read my profile to save time and space for how they came about, but an ostomy has been with me all my life. Today with 2 external ones , I am not worse off than any of you, but can’t bend over hardly at all ( maintain with no loosening) and at times, feel like I just have a bunch of plastic on my belly ( I miss a smooth abdomen). My diet is very restricted—-no sugar, all refined grain, 4 small meals per day etc. etc.. Sometimes (rarely) I could just scream, but think of my faith. Besides my darling husband , my doctors;Igor Frank, Connor Loftus are the core of my well-being. I go to Mayo R every year . Two ostomies is not the end of the world, but ,sometimes it’s hard to see over the horizon.

@engelee I certainly admire you for talking so openly about your health and helping others. I can understand that meals must be a problem. Is it possible for you to eat out with friends?
Have you read the posts by @hodagwi —he could certainly use some info from you

@rwfliess I certainly do hope that you will jump back in! There is always a need for your expertise!

Oh I do because I have wonderful friends. But usually instead of hamburger I just get meat , appetizers at high quality restaurants are pretty good. I go for the friendship more than food.

I love to go out lunch with my friends. However, there are 2 considerations: potential leak from urostomy and food restriction. The first requires some strategizing I can’t sit for long period of time in a straight chair so I may be the one to excuse myself. The 2nd doesn’t really count because I’m there for good conversation . I may have acceptable bowl of soup and I usually find something in appetizer to eat.

The posting on this Ostomy site all seem to be old ones. Is anyone still watching this site?

yes. we see the comments and updates from old postings as well as new postings.

I have had my ostomy since June of 2019 and I am still having several different problems. First my skin doesn't seem to accept the adhesive on the flanges and falls off after one or sometimes two days. Second the stool which was too fluid in the beginning is now the opposite. I was instructed to take fibre supplements and they helped in the beginning but soon found that even when I cut down the amount and took it only every two days the stool became too stiff. Also, the stoma has changed it's shape and is now quite flat at one end and sticks up as it should on the other. I have an ostomy specialist which I have visited twice and my barrier ring, flange and bag have all been changed multiple times. Does anyone have any advice on any of these problems? I would appreciate any suggestions.