Hello all 👋🏼Although my colostomy surgery was in August, I have only been home and managing it on my own for the past month. This is my first post, but I've already been finding the answers I've so desperately needed from your responses to other newbies. My apologies for taking so long to say hello and to thank you. I am so blessed and grateful to have found you, since without you I would still be completely lost and quite literally in a world of sh*t!After “Stanley” was installed, I was in the hospital for two more months and used that opportunity to learn as much as possible since I live alone and have limited mobility due to damage and intractable pain in my spine, tailbone, and hip.By the time I was finally discharged, I had become moderately competent at bag changes, skin care, and emptying, and I'm happy to report that - thanks to this site - I've only had two blowouts since I took over after having sooo many in the hospital and often multiple times in a single day.As so many have mentioned, I've learned more from this site than from any of the medical professionals involved in my situation while I'm on the hunt for the elusive stoma nurse you've been raving about.I'm receiving home health care for now and have been working with a visiting nurse who is very kind and is familiar with general stoma care. But I need to be using convex skin barriers, and when I asked her to order them for me, she had no idea what I was talking about!So I called both my GI and my surgeon's offices and was informed that neither one has anyone on staff who would fit the description of a stoma nurse, but I could place an order and they would ask my doctor to approve it the next day.I then discovered that I can't even place my own orders until I'm discharged from home health. Finally, by guiding the visiting nurse over the phone through the supply company's website to the right product (I think?), I'm told my fancy new convex wafers are on the way.When I broached the topic of a stoma nurse with her, I was informed that there is no such thing and that home health nurses teach patients what to do with their stomas, and once discharged, patients are (in essence) on their own.Sorry for the long-winded first post, but perhaps you'll get a better idea of why when I say I'm mighty grateful to have MAO; it's a HUGE understatement!Because instead of just me and Stanley, as I expected, it's…MeStanley and all of youMuch love, many blessings…Pati

The Elusive Stoma Nurse

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AlexT

Dec 08, 2025 3:30 am

I’d rather dribble(whatever that means 🤷‍♂️) than drink prune juice. 🤮 😁

Pouch Potato

Dec 09, 2025 5:44 am

Hi Me&Stanley. I used to live in Tampa. I'm surprised you can't find a WOC nurse there. The 1st 2 home health nurses they sent me didn't know anything about ostomys. Finally the 3rd one was an ostomy nurse. I helped her realize that she needed to train all the other nurses in her company, and I give her all the supplies I can't use for her trainings!

Another resource, besides MaO, is the United Ostomy Association of America (UOAA). You can search by zip code for a support group. Mine is facilitated by a retired ostomy nurse, so we have regular access to advice and info from her.

Good luck!

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HenryM

If I was a relative newbie with an ostomy, I have no doubt that this site would be very helpful to me. The members are quick to respond to questions and issues and they are filled with experience. When I joined, I already had a lifetime with an ostomy, so I just regard it as a place to meet and communicate with other folks similarly situated. Either way, it is a good site.