Challenges in Finding a Reliable Ostomy Nurse

When folks have issues with their ostomy on here you see a lot of folks (myself included) often recommend they contact an ostomy nurse for help. But have you tried to find a good ostomy nurse lately? I did... and it wasn't as easy as it used to be. That's for a variety of reasons, but the biggest one it seems is that those with the most experience in ostomy care have either retired, or are in the process. And it seems hospitals and such don't assign "apprentices" to learn from them, but instead just replace them with a new wound care nurse when they leave... and they typically don't have anywhere near the experience the retiree has. That makes for a huge knowledge and experience gap that someone needing help (like us) might not anticipate. So note to self... finding an ostomy nurse may not be as simple as it sounds... and when you do find one... there's no guarantee that they're a good one. So recommending to someone else that they find one needs to come with a caveat to keep looking until you've found a good one.

When I got my ostomy back in 2014 I made it a point to meet the ostomy nurses from the three major hospitals in this area of the country as soon as I was healed up well enough to do so. I also sought out any other ostomy nurses that were within an hour's drive or so. I learned early on that if you call an ostomy nurse regarding a problem they really won't help unless they can see you in person. Once they see you they're usually very open to just calling them or getting on a Zoom call the next time you have a problem. So I got the 'meet and greets' out of the way while things were good, and knew I could then call them if things got bad. But other than one instance of what I'll call an 'allergy' to my ostomy products... I haven't had any reason to contact them. And between now and then the majority of them have retired... or are in the process. A couple were replaced with younger wound care nurses... but some have not been... and when I call those facilities I just get the answer... "we're looking for one".

When I had my stoma revision a couple weeks ago the ostomy nurse in the hospital was a very young gal, who while very nice, wasn't well versed in dealing with complications. But hey, everyone has to start somewhere, right? I just think they should have an up and coming ostomy nurse shadow the older more experienced ones for a bit before they take the reigns... but I guess that costs money.

So my advice to everyone on here is to check to make sure the ostomy nurse you use, and expect to be there the next time you call for help... actually is. And if not you need to get looking for a new one before you actually do need one. And for those we advise on here to go talk to an ostomy nurse... we need to keep it in mind that that might not be as easy as it sounds either.

As an aside... I went to the UOAA site and clicked on 'Find an Ostomy Nurse' and then used their list of nurses in my area to send emails to the nearest 5 in their database. All showed certification until 2025 and beyond... and not one got back to me in over a week. So finding an ostomy nurse apparently is a real challenge these days. Just wanted to give everyone here in the States a heads-up and let you know.

;O)

Bob

Very helpful post, Bob.  Thanks.  I think I might contact a local nursing school and make some inquiries.  Ostomy care ought to be part of their curriculum.  

I guess I should finish my story. I did find a very good ostomy nurse a couple days ago, who's emailed me every day since. She was located at a small unknown (to me) hospital about 45 minutes from me, that from its size I would never have thought would ever have an ostomy nurse. I got her contact info from the wound care gal I spoke with at John's Hopkins the day before, who actually cared that the ostomy nurse from her hospital (who I was trying to contact) was long gone, and didn't want to leave me hanging. So she took the time to call around to the medical facilities in my area until she found me someone.

I'm continually impressed with the care and compassion most of those in the medical community have shown toward me (and I hope everyone), despite them personally not always being able to help. They're good people........we just need more of them to take up ostomy wound care! So the bottom line is there's still some good ostomy nurses out there........YOU just have to find them! And then as time goes on......check every now and then to make sure they're still there!!

;O)

Hi Bob,

When my mom came home from the hospital at the end of September of this year with a colostomy after emergency surgery, we were in desperate need of help and guidance. I had a visiting nurse come twice a week, who was very helpful (but not an ostomy nurse.) I also was in communication with a wound care nurse at the hospital. She gave me business cards while my mom was hospitalized and when we came home, I sent quite a few emails, sometimes with pictures describing any issues that we had. She was so helpful and even continued to give me free samples a couple of months after discharge when mom was having issues with her wafer leaking.

We were using Convatec products so I was also in contact with Convatec nurses as we were trying to find the right products to suit my mom. What I found to be the most helpful was that Convatec asked us if we wanted to do a Corstrata Virtual Ostomy Support visit. It was easy to schedule and we had a virtual visit with an ostomy nurse. The ostomy nurse was amazing. We spoke for about an hour and she watched me take everything down and put a new wafer on. She helped me measure my mom's stoma because I never did that before. I asked her during the virtual visit if I could text her a picture of something and she said yes and gave me her number. Since then, I have contacted her a number of times and she always was there to assist. Very knowledgeable.

I felt pretty lucky with all the support we had. However, one time the visiting nurse who was assisting my mom was on vacation and they sent a different nurse who was either not familiar with colostomies or did not have knowledge of the products mom was using. She changed my mom's wafer and I came home from work 30 minutes later, the wafer was already coming off. We never had any issue of the wafer not adhering to her skin so I wasn't sure what the nurse did wrong but I requested this nurse never come back.

Thank you for your post on this topic. I found it to be very helpful.

My experience was more like Bob's. Except for the part where he found one. Well, actually, I did find one. She was two hours away, though. I made an appointment with her to discuss dealing with a hernia. She couldn't answer any of my questions or offer any guidance to speak of. I did, however, get measured for a hernia belt, so it wasn't a total loss. But I was pretty disappointed. Partly because my first ostomy nurse, who worked for my first surgeon, was pretty amazing. Sadly, she's no longer available.

How to Manage Emotions with LeeAnne Hayden | Hollister

Hi daughter,

Thanks for the reply! Maybe you're on to something. The best ostomy nurse I ever dealt with was one who worked at Nu-Hope, and she was incredibly helpful. She solved a skin irritation problem I had that no one could figure out... including 3 other ostomy nurses at very large hospitals and the DC area's best dermatologists. So maybe the best ostomy nurses are to be found at the ostomy product manufacturers. In my case, I felt a bit bad because she solved the unsolvable, but because of that I didn't need the products her company sold. She sent me tons of samples and was fine with me not ordering anything... but I still felt a bit bad. I've only contacted Hollister once, when I was dealing with that impossible problem... and they came up empty on that one. But I'm going to remember your experience and won't hesitate to call the major suppliers next time I need help and see if they can help. Great idea!!

Thanks,

Bob

Your welcome Bob!!

I was so thankful Convatec offered the opportunity for me and my mom to do a virtual visit with an ostomy nurse.

I had called Convatec so many times with questions and trying to get free samples to find the right products to use. When I would call for assistance, I would sometimes get transferred to Clinical Support Nurses at Convatec and they were sometimes helpful, sometimes not helpful. But this one nurse at Convatec suggested this virtual visit with the ostomy nurse because I needed further guidance and it really saved me and my mom.

The ostomy nurse helped us find a product that stopped the pancaking and the leaking. She also educated me quite a bit and made me more comfortable with the whole process.

I do remember my mom's ostomy nurse telling us she did not work directly for Convatec. Just like with your experience, she was there to offer recommendations about certain products and I also got an email summary after the visit along with free samples. After her recommendations, we switched from a flat wafer to a convexity type and my mom's issues were solved! I can tell she genuinely cared and wasn't trying to just push mom to use Convatec products. I remember asking if Convatec had a product similar to Cavilon No Sting Barrier Film and she said yes but that Cavilon was a better product.

I'm not sure if all the ostomy nurses at Corstrata are knowledgeable but the one that helped us was fantastic. Convatec helped initiate the virtual visit appointment. Convatec gave Corstrata my email and number and I got both an email and text to schedule appointment, which I was able to schedule the next day. I think they did have availability that same day as well. I'm wondering if anyone wanted to schedule an appointment with Corstrata on their own, maybe they could. We didn't have to pay for this because we were members of Convatec me+ program (the hospital signed us up I believe). Otherwise, I think there is a charge.

Here is the website if anyone is interested: https://www.corstrata.com/

Very true! I have had ileostomy for 45 years in April. I had 3 ostomy nurses, 1 was male with 2 ostomies. If not for their help and wisdom! They all retired years ago and all I can find is wound care--which is really not good. As the few times I have gone, the "nurse" looks at my stoma and says this and this? Then a "DR"? comes in and says looks good to me on her suggestion--- learn more and get more help on this ostomy site. Sad situation, no more trained ostomy nurses.

Sad to say, but I've had the same experiences... I live right near an ever-expanding hospital, with good outreach for all kinds of conditions, as well as an active "wound care dept" but no Ostomy nurse... or group nearby. When I spoke to one of my 10 different doctors (no, I'm not a hypochondriac - just addressing for each body part that needs attention), he said... there are not enough "ostomates" to support having stoma care nurses available... Hmm... They do have some in the county visiting nurse service... I called several hospitals in the state and was referred to: stoma clinics, more than an hour away... I did make an appointment at one, and two "lovely" nurses were very helpful... I have nearly 60 years of experience managing mine, while they each had less than ten. They had a few suggestions that I tried, but that didn't work out. What I have found (over the years) is that I've become "set in my ways" and resist change... especially of new systems... The ostomy nurses are more familiar with the newer supplies, but I was resistant to switching... In my case, my lower belly lost its muscle tone (due to 2 pregnancies, weight gain and loss, and age), so what was once a somewhat firm belly is now "flabby" by comparison... Apparently the faceplate of my convatec is too "firm" to bend with my skin... They wanted me to try a more flexible type, made by another provider... So, in my case, I rejected without trying something new and different... I'm rethinking my decision... and may make another appointment... Just wanted to share that even inexperienced newer stoma nurses may have insight... that we may not agree with, or are just resistant to changing or trusting... Marsha

Great comments guys.........thanks!

What struck me as funny, with both the 'new' ostomy nurse I had while in the hospital (while getting my stoma revised) and the surgeon's assistant (who I saw frequently after the surgery to deal with an infection in the incision) was that I'm not sure they really understood how a stoma works. Yeah, I know that sounds a bit nuts........but the 'new' ostomy nurse kept trying to change my barrier while I was laying down in the bed. I explained to her that I was short-gutted and that my output was more or less constant (or best case pretty frequent), but I don't think it registered. So she kept trying to change my barrier with me laying there and as soon as she'd get the area clean........and go back into her basket for a barrier........I'd have output. It was pretty comical to be honest.........like a Keystone Cops movie. And I had suggested to her that I stand up and get over the sink, or a bucket while she did the change.......but she was confident she could do it with me laying down. After her third attempt, and a lot of wasted ostomy supplies.......I suggested she open and cut the barrier first, then clean the area and quickly stick it on. At least that way she'd only have to clean up what comes out and gets on top of the barrier. That finally worked, but I was really surprised she didn't understand what I was trying to tell her.

Same thing for the surgeon's assistant. She told me before each visit (I saw her 4 times in total) that she was going to have me remove my barrier so she could see how the incision was healing. Luckily I cut my barrier bandage section completely off on the bottom where the incision was.........so she didn't need to pull off the full barrier........but she was pretty hell bent on doing just that with me sitting in the big chair. That would have made quite a mess. Now had she seen me first thing in the morning, when my stoma is fairly quiet and I could hold off eating....it might have worked. But she was pretty clueless about how the whole thing worked.

I think as Marsha said........ostomy nurses are now lumped into 'wound care', probably given a chapter to read in a book or two while being trained....and then sent out into the world with a pat on the back and a few 'good luck' sentiments. At least the ones that work in the hospitals. It's a bit troubling........so as usual, we're our own best advocate on this stuff and probably shouldn't get our hopes up when dealing with ostomy nurses. And then if we get a good one.....we'll be pleasantly surprised!!!

;O)

When I went for a checkup at a local hospital, I felt I knew more than she did about this condition. Scary. I felt so old.

Hi all.

Not sure if this is just the UK but ostomy nurses are actually contracted to the medical company not the hospital.

Hi Caz,

Here it seems each hospital has a "wound care" department, and ostomy nurses fall into that category... but not every 'wound care' department has one. That's driven by demand I assume, and in nursing they have a wide-ranging career path that can take them from a CNA (certified nursing assistant) to an APRN (Advanced Practice Registered Nurse). I think the "ostomy nurse" part is an add-on somewhere in there, and not required... hence the scarcity of ostomy nurses.

There are also separate 'Wound Care' clinics around, but I've yet to see any of those have an ostomy nurse on staff. Ostomy nursing seems to be one of those things that 'slips between the cracks' because of the low number of patients requiring that specific type of care. But of course... our numbers are growing! Unfortunately.

;O)

I'm in MD as well and when I got my osteomyelitis back in 2015 they said all the stony nurses were on Christmas vacation. So they handed me a couple bags and out the door I went. I tried to contact them but no one ever got back to me so I have never had an ostomy nurse and have been fumbling along ever since. Sometimes it would be great to get help with fitting and a proper bag but I just keep trying to find the right stuff. Not too much out there for a chunky monkey with a convex ostomy that I wish I could find someone to make it an outie. One side of my skin is getting thick and I feel like it is going into the ostomy area. No doctor I have seen has answers. Lost for years