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 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…
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. She showed me the basics. But the care of my colostomy was left up to me.

I looked at a few online videos... 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 appointments 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, and 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. 😳😁

Stories of Living Life to the Fullest from Ostomy Advocates I 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. I'll probably work as a home health nurse, actually.

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

By the way, 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. There's 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 for 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, in my humble opinion, they are undervalued and underpaid for all they do.

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

Only a very good doctor 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 are 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 your notes and feel sorry for you that you don't have a stoma nurse near you.

If you contact all of the different companies 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 a 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 its use for "crusting." I don't know why, in many cases, Ostomates 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, or diversion proctitis. And he 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, courtesy of the "most excellent" Ostomates 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, and 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 to be honest, I think the best stoma nurses are those who 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 it shouldn't. I can only be labeled a Stoma Associate under the supervision of an RN or doctor, 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 of 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 chosen a different career path altogether. God bless and 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 I don't use their products. It 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)

Hi Pati, welcome to the site. 40 years ago, when I got my ostomy, I had a home nurse visit that did blood pressure, temperature, and looked at my scar. That was it, and like w30bob said, look for a wound care nurse; that's what we have around here in N. Mich.

Hello Iggie. No sympathy needed here since everyone faces obstacles. I'm just happy I found MaO for so much information and support, and it looks like there's a good chance I'll find a stoma nurse in the appliance department. 😃

I have an “if it ain't broke, don't fix it” approach, so since I'm familiar with Hollister, I'll be in good shape when the convex wafers arrive.

Thanks much, and be well.

So sorry to hear the outrageous trek to navigate to be the “official” version of who and what you already are - a knowledgeable, caring nurse who is such a valuable asset to the medical profession.

I was so blessed by the many incredible nurses and techs (who most certainly don't get the respect they so deserve) during my long hospital stay. The first nurse I got to know shared with me that her daughter had a stoma for a number of years when she was younger. Her personal experience and her willingness to share it gave me so much hope and comfort, and I will never forget her.

I know you will do the same with your patients, but it's such a shame that there are so many roadblocks to get there.

Just keep the faith and never forget that I am only one of many who will be here to cheer you on as your journey unfolds!

Much love, many blessings…

Pati

Thanks much for your suggestions, and I'll keep looking locally. My home health nurse often mentioned she worked with wound care patients, so I'm guessing that is her primary specialty, as you mentioned.

I'm having a virtual visit with my primary today, and he's been around a while, so he may have a resource I'm not aware of yet.

Given my limited mobility, virtual works great for me, so having access to the stoma specialists with the companies gives me great hope, especially hearing your success and that of others here!

MLMB…

Pati

Just so wrong!

I'd imagine stoma care in general was very different in the early days of your 40-year journey!

Hard to complain in my situation since at least I have the benefit of today's technology and access to virtual care.

MLMB…

Pati

Hi Me&Stanley, I found my stoma nurse at my health network’s wound care facility. The staff focuses on wounds and ostomies. You might want to start there and see if there is a wound care office somewhere in your area. Most of the hospitals here have a wound care, wound & ostomy care centers. My person was a nurse practitioner and she was awesome. She has since retired. 😞. You might also see if there is a local ostomy support group. They’ll know all the ostomy nurses in the area.

And google other suppliers too, the have coloplast and convatec, and Salts etc. They are usually generous with samples.

Hi! Glad you came to this community for support and answers! I am an "elusive stoma nurse" hahaha we do exist! My formal certification is WOCN. Sorry for people giving you misinformation or partial information, many people do have ostomies without ever meeting a full scope wocn. Keep asking questions, there are many ostomates and some ostomy nurses here on this site who are glad to help. Nice to "meet" you and Stanley!

Ok Ollie? Yes, Stanley!

If a convex ring works with your present bag, stick with it. Once u feel comfortable there are other options. I use a slightly convex coloplast bag(Mia Sensura) Ali g with a small flat ring from Convatec. I had to try 3 different rings before I found the perfect one. I know from experience that Hollister, Coloplast and Convatec will answer questions, work with u and find solutions. They will also send u samples. Being proactive as u are, definitely pays off.

I too have struggled to deal with output from colorectal surgery 13 years ago that left me with a permanent colostomy. The problem was noise and constant dribble throughout the day that was uncomfortable and embarrassing at times. My solution was drinking 6 ounces of prune juice every morning. This has saved my psych as it is consistent and relatively timely. I hope those struggling with this issue can benefit from this experience❤️