The elusive stoma nurse

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 answers 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 only 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…
Me
Stanley
and all of you

Much Love, Many Blessings…

Pati

Hello and welcome.

It's tough at first. After discharge, I had a visiting Ostomy nurse come to my home twice a week, for 2 weeks. Showed me the basics. But the caring of my colostomy was left up to me.

I looked at a few online video's... not enough detail. Then I virtually stumbled onto... MaO. And that's how I learned the art of stoma care.

You're gonna be "right at home" here on MaO. I like your good humor.

Elusive is the word! I live in a town of about 90,000 people and we have no ostomy nurse at all, they take appts for a visiting nurse every other Friday morning. Needless to say, the appointments are months out. I ended up signing up for a free service with Convatec & to my surprise, that included a video call with an actual ostomy nurse! She took one look at my stoma and knew what I needed to try. I’ve been using that product ever since, although I just put in a call to Coloplast and will be trying a few of their products once they’re delivered.

Thanks so much! I’m still using the Hollister that I’m familiar with from the hospital but I’m getting more confident and ready to try other products. I’ll be getting in touch with Convatec for sure 🤗

Wowza two weeks and you were on your own?! At least I’ve gotten a little more home care just non stoma specific. And the humor I have found here has been my favorite feature… well unless I’ve been in poop panic mode 😳😁

My Ostomy Journey: Ryan | Hollister

I don’t know where any of you are from trying to find a stoma nurse but where I’m from they do exist!

I’m a nurse who let her license lapse but I’m studying my NCLEX exam book and retaking the test to be recertified as an LPN. In addition I’m on SSD but I have to take a short class on wound care to be an Ostomy nurse associate which I’ll do part time. Probably work as a home health nurse actually.

I never knew the need for Ostomy nurses was in such demand before reading this.

Btw I have been an ileostomate for about 21 years. That should account for something.

Welcome to the site! My home healthcare service has an actual ostomy nurse... as did my hospital. This situation is totally unacceptable.

Call all the manufacturers. They all have ostomy nurses that can advise you. And ask us anything. No such thing as TMI.

You have a great attitude. You're going to do well

I’m pretty shocked myself since I live in Tampa and have tons of medical resources nearby in all directions. I’m impressed and excited for your nursing goals as I’m on SSD as well. Your own personal experiences give you a perspective that no training could provide and I wish you all the best!

Agreed which is why I’m so glad to find myself among so many caring and supportive people here! Dwild mentioned Convatec but I’m guessing other companies might be helpful too. Thank you for the warm welcome and encouragement. Those baby steps truly do add up! 😃

I live in East Tennessee close to some huge teaching hospitals. Maybe that’s it. Not entirely sure as you definitely have a point about the area you are from.

Thank you for the well wishes and taking note that experience should account for something. If you need anything never hesitate to ask.

Regards

One of my ostomy nurses marked the spot for my stoma. When my colorectal surgeon saw it, he thought it looked good. He put it exactly where she placed her "X." A few months after surgery, I went back to let her know how things went and she was very pleased. She said she gets very little feedback and was happy to know that this particular surgeon thought she did a good job. :)

Kudos to her and kudos to you for letting her know she is appreciated. It’s so easy to point out a slight so I’m a big believer in positive feedback. Especially to the nursing community since imho they are undervalued and underpaid for all they do

It truly makes a nurses day or life for that matter to know you did something so profound in a person’s life that your actually acknowledged for your efforts.

Only a very good Dr or Surgeon will tell you, “We are only as good as our nurses hard work allows us to be”.

Not every doctor will say that but the ones who know we work our butts to the bone gathering important pertinent information and details. We work and are with the patient most of the day as much as our patient loads allow us to be. Not them. They look at our work, our notes and treat you fast and accordingly to our records.

I know not all nurses aren’t or don’t seem nice all the time. The lighter our patient loads allow us more quality time and care for you.

Just saying…

Welcome from Oz 🇦🇺

G-Day Pati,

I enjoyed reading you notes and feel sorry for you that you don't have a stoma nurse near you.

If you contact all of the different company's that make stoma products they will all send you free samples for you to try, give them all a couple of days wearing them and pick the one that's right for you. I use Hollister and have been very happy with them.

Good luck and keep smiling.

Regards IGGIE

Your personal ostomy experience and professional nursing skills will combine to make you an excellent ostomy home health nurse. I've had a colostomy with mild parastomal hernia for 3 years. It took me one year to finally discover what a moldable barrier was, and how and why it was used. Same with stoma powder and it's use for "crusting." I don't know why, in many cases, Ostemates are left to "fend for themselves" after discharge from the hospital.

I had many appointments with my Gastroenterologist during my first year after surgery. He never mentioned parastomal hernia, prolapse, Diversion Proctitis. And knew zip about stoma care. I also visited a stoma nurse at the hospital 3 months after surgery. The guy quickly changed my bag, then said, "looks good" and disappeared. It's like, "I have questions?" But he didn't come back.

I'll never forget looking through an ostomy supply catalog a couple of weeks after getting a colostomy... and wondering, "what the hell is this stuff used for?" Now curtesy of the "most excellent" Ostemates worldwide on MaO.... I know exactly what to use and how.

Pre surgery ostomy placement is so important, but not practical for emergency situations.

Thank you BB! I’m excited n even though we do have stoma nurses there needs to be more.

More with life experience, been there done that as the struggle is real and tbh I think the best stoma nurses are those that have shared in experience what all of you are living through and I think we deserve better pay because of it.

In order for me to be labeled a Stoma Nurse I have to go from LPN to BSRN. That’s where the money goes but shouldn’t. I can only be labeled a Stoma Associate under the supervision of an RN or Dr. and that infuriates me to no end because yes they have the years of school behind them yet I’m more qualified than either with 21 years experience being an ostomate myself. It’s disheartening and very unfair. I can work circles around them but the Board of Nursing does not recognize us as fit because we don’t carry the title.

So I do believe there is a shortage across our country because the pay scale is much much lower.

I truly appreciate the thoughts of those who are supportive and caring. If it weren’t for that I may have chose a different career path altogether. God bless n keep you all.

Much love & gratitude 🙏

Hi Me,

If you can't find an ostomy nurse where you're at here's what you do. Call the hospitals in your area and ask to speak to the head of their 'wound care' department. Every hospital has one that's chock full of wound care nurses. When you talk to them ask if they're versed in stoma care and whether they are or are not also ask if they know of any stoma nurses in the area. A lot of times in areas where there aren't many people.......or many ostomates.........your next best option is a wound care nurse. They're usually experienced with ostomies at some level, but the majority of what they do all day is general wound care, so they don't advertise as being experienced in stoma care. And if they aren't comfortable with stoma care they usually know someone who is, as they all know each other. Word of mouth is your best bet in your situation.

Also, as said previously, all the ostomy supply companies offer free consultations with their stoma nursing staff, so don't hesitate to use them, even if you aren't using their products. I've had a lot of luck with the stoma nursing staff at Nu-Hope labs, and don't use their products. Seems stoma nurses enjoy helping people and don't really care if you buy their company's products or not. Go figure!

Let us know how you make out.

;O)