Challenging the Invisibility: Ostomates' Frustrations with Nursing Care

I want us ostomates to stop being invisible. I want to write about why ostomates hate nurses in general and sometimes our frustrations with ostomy nurses as well. But I'd like to hear your thoughts. I don't want to just complain; I want to find out what we as a group find most frustrating and upsetting.

CLARIFICATION:

Because of my experience, I have the desire to write an article aimed at the nurses and physicians who teach about ostomy. And the problem with the ignorance of the bedside nurse with regard to ostomy. We need to stop the practice and behavior of bedside nurses to avoid any care to the ostomy patient, not just with regard to their ostomy but any care at all because they are waiting for the ostomy nurse to show up to take care of every single patient with an ostomy. But if I simply write the article based on my own experience, I sound like a whiny b**** and I won't get anywhere that way. I'd like to collect experiences from anybody who would like to share with me, either in a private message or a post depending on how appropriate it is because I'm going to collect these experiences and explain the commonality of the problem. So if anyone is willing to help me by either telling me their story or just sharing general observations, I would be pleased to accept your input. I should also mention that in my field, I'm an award-winning author and a very popular speaker. If I am able to get attention with the article, I may be able to start speaking to groups of nurses and bring us out of the dark ages. Ostomates should not be ignored while they are in the hospital because nurses are afraid to face their ostomies. Even if your experience is quite the opposite, I would love to hear from you. My thanks in advance.

I have found the lack of continuity between medical departments to be very frustrating. For some of us, it's just one thing, but a lot of us have comorbidities, and those added layers come with a complexity a lot of medical systems do not seem equipped (not sure that's the word I want to use, but I'll leave it for now) to take care of patients at the level of care an individual deserves/needs.

Way too much to say

Hate nurses? That's just plain stupidity. Nurses run the hospital and know more about what's going on than anyone else. I love my nurse.
If you do write another one, could you please use pictures? I'm still trying to figure out where my leg was supposed to go. &zwj

Hey, haven't talked to you for a while. Would you mind elaborating on your response? You could either do it in a private message or as an addendum, but I really need examples of some things that have occurred to you. If I simply post my complaints, I sound like a whiny bitch and I won't be able to get anywhere like that. I'm trying to compile as much information as I can from other people with ostomies who have had the experience that now they simply hate the nurses. Although it's not the nurse's fault that they haven't been taught, the problem is that ostomy nurses need to be training the trainer. The job of the ostomy nurse should be able to get bedside nurses to comply and not wait for the ostomy nurse to do it for them. That attitude has to stop now, and I'm hoping to effect it with this article. I don't know if I told you before, but in my field, I am an award-winning author and a very popular speaker. If this article is well received, I may be able to do presentations to ostomy nurses, helping them understand how to organize, teach, and motivate their nurses.

Okay Alex, I wrote a clarification for you and anybody else who might misunderstand.

Regarding positions for sex, do you really need more than the first three pictures? Haha.

You and Bob had me in stitches in your response to that post. You are quite observant.

Go back and read my response in case you didn't see it.

Unfortunately, sending you more pictures by private message is not allowed, so unless we exchange email addresses, I don't see that being likely. The next set of pictures won't be for general consumption.

Hey Julie, I know it's been a bit. I hope you are healing well.

I will elaborate once I get a new charger for my laptop. First died, replacement blew up, and I don't like typing a novel on my phone.

I'm super sleep deprived at the moment thanks to current foster babe, so I need a nap day or it's impossible to organize ADHD thoughts.

Amazon sent the wrong charger this time so I sent something quick (somewhere below) for now.

Personally, I have not witnessed ET nurse hostility for competent nurses. ET nurses are heroes. If there is hostility, it is likely to be situational psychological transference.

I know the floor nurses where I was followed the instructions the ET nurses left them - same instructions they sent me home with. My ET nurses had me doing bag changes myself before I left the hospital. I had a really bad floor nurse my last hospitalization but it was 1 bad out of so many good but he left an impression. Wasn't crazy about my home health nurses - I'm sure as people they are great but as far as ostomy care if I was doing a better job after a few days of training than they were it wasn't worth it for me to have them come back. But I was on the phone multiple times a week at first with the WOC nurses at CC then once a week or more in person visits because of the issues I had. I feel like the WOC nurses have a special calling in the medical world for the type of care they provide.

Get a copy of the Kama Sutra. The gymnastics explained and illustrated. Never a dull moment and designed to keep you awake, aware, and beguiled all through the long hours of the night.

Excellent idea. I would like to help, but unfortunately my response would have zero relevance in your milieu. Not that my other comments have much relevance either. Too far away and everything is different, but I am sure some of the others here will give you the feedback that will help in your research. All the best wishes.

Give me something to read when I'm stuck on a train for hours.

Yeah... what he said. I think.

;o)

I've only ever had 1 bad experience in over 30 years of having an ileostomy... Long story short, I had a perforated small bowel just over 20 years ago and had a jejunostomy stoma for 18 months. I had a stroke in surgery at the same time, so it took some time to recover. While in the hospital, the bag was leaking badly, as they often do with a jejunostomy. I know most won't have any idea about the output from them, but I'm sure you will with your experience. I still couldn't do anything for myself at that time, and the nurse looking after me refused to change my bag. She was shouting at the top of her very loud mouth, "I've changed enough of those bags today. I'm not changing anymore." I was left in bed for hours with tissues packed around my bag until her shift finished. The nurse then changed it straight away. Other than that, I can't complain. Even when I had surgery on my hand, me and another nurse couldn't stop laughing. I had 5 young nurses change my bag, one after another. They had never changed one before, and they were so excited to change it, lol.

I can understand nurses having to be cruel to be kind, being tough on us to make sure we know how to change and look after our stomas when we leave the hospital.

My only complaint, more so for ostomy nurses and some doctors, is that they should know more about unusual and rare bowel diseases. Having FAP myself, I've been told by a few that once you have an ileostomy, you don't have any more problems as your colon has been removed. That shows they know nothing about FAP and very dangerous advice. We need a close eye kept on us for life with all the complications we can get.

Love trains. I noticed the new ones don't go clickety-clack anymore. As for books, how about 'Night Train to Lisbon', a love story that will keep you riveted. Then of course there is 'Murder on The Orient Express', Hercule Poirot at his best. What is the most unusual thing that has happened to you while riding a train? Best wishes.

Hi

Am I missing something here? If, as you state, you are an award-winning author and popular speaker, why haven't you been asking nurses these questions yourself?

Will

Well, besides the dead bodies and derailments, the most unusual thing was a few months ago a truck fell off the interstate and onto a parked train. That train started to move and nobody knew there was a truck on it until we went by on our train. There was a time that some people hopped on a train to ride. They had to get off the train in a hurry because our crew was getting on it and they left their dog. Their dog rode the train for the day and got spoiled, he went to a good home.

Ok. Quick example. You know I love the WOC nurses (except one) but the one thing that frustrated me but I also see the value in (make sense of that what you will) is how I would be told or shown one method by one nurse and something totally different the next week by a different nurse. But I watched how each one did what they did and each time picked up a new skill. Sometimes it was their personal preference, sometimes it was because the skin probably looked a little different than what the previous nurse saw. I was trying to find a way to voice some of my frustration about it one day over the phone without being rude and the nurse shared with me what another patient had said when he was frustrated and she told him it was like having different bakers in the same kitchen each going for the same result but each has different methods and he responded with "that's fine but don't burn the cookies in the process!"

Lucky dog. They love riding cars, and probably trains as well, especially when the wind hits them in the face. Best wishes.

I have been for 30 years but one voice in the wilderness is not enough. It's not changing the overall perspective. I once was the only Enterostomal Therapy nurse in a large 4000-bed hospital in Los Angeles. They also had a 36-bed long-term care unit attached. I was responsible for all of it. That's when I figured out I couldn't see every patient with an ostomy. I had to teach the nurses to do the basic ostomy teaching and care, and I could do the more exotic ones or the ones that had complications.

With a nationwide article, I hope you catch the hearts of WOCN nurses first, then general nursing one step at a time. I just thought of the idea recently, and I don't know if I would have been able to do this if I hadn't had an ostomy for 10 years and been a frequent flyer at the hospital for unrelated conditions.

I have been for 30 years but one voice in the wilderness is not enough. It's not changing the overall perspective. I once was the only Enterostomal Therapy nurse in a large 4000-bed hospital in Los Angeles. They also had a 36-bed long-term care unit attached. I was responsible for all of it. That's when I figured out I couldn't see every patient with an ostomy. I had to teach the nurses to do the basic ostomy teaching and care, and I could do the more exotic ones or the ones that had complications.

With a nationwide article, I hope you catch the hearts of WOCN nurses first, then general nursing one step at a time. I just thought of the idea recently, and I don't know if I would have been able to do this if I hadn't had an ostomy for 10 years and been a frequent flyer at the hospital for unrelated conditions.

Guess I was kind of fortunate in my experience with ostomy nurses after my surgery while still in the hospital for 11 days. Probably saw them about a half a dozen times, very thorough in explaining emptying and changing pouches. Only thing that would have been better was if they could have spent a little more time explaining different problems that might pop up. Fortunately none did and any other information I needed it, I found on this site and United Ostomy Associations of America. As far as the other nurses that I had contact during my stay had absolutely no problem with them taking care of my needs. Day I was leaving I asked one of my regular nurses if she could just watch me make a final change of my appliance while in the hospital and absolutely no hesitation on her part in watching. Fantastic bunch of people I came in contact while in the hospital. Hospital that I stayed in was St. Joseph's in Syracuse, New York. Don't know if this is the kind of information you were looking for.

Sadly, it's not just doctors and nurses. Dietary is another issue... One of the things I do is talk openly about my ostomy and don't make it a secret, bad thing. The more people know about ostomies, the better. I certainly appreciate your wanting to help improve the situation.

The hospital I was in had an ostomy team. They came in before my surgery and marked the place they thought would be the most ideal placement, had me sit on the side of the bed to make certain I could visualize the site. I did not take any of this too seriously as I did not think I would have an ileostomy, but I came out of surgery with one. The same team came in and introduced me to the appliances, demonstrated a change, and warned me I would change the next one. I did under their supervision, did okay. I made my own list of what I needed to do the change, and a list of each step of the process in the order it needed to be done. I went by my lists religiously when I came home until I had memorized the process. I had a home health nurse who really had no more experience with ostomies than I had but we leaned on each other and she steered me back to the hospital ostomy team a few times when I had problems. They ALWAYS had the answer. My experience has been positive but I too am a registered nurse so had some background, but no experience in this field. I felt the hospital floor nurses had a working knowledge but deferred to the team any persistent or out of the ordinary problems.

@ostomate wound rn: Maybe let's start the convo with a term other than 'hate' nurses. I understand the terms ‘aggravated' or 'frustrated' but 'hate'??

Well, I'm a retired nurse and only took care of a very few ostomy patients over the years and they were patients with a brand new ostomy. Patients that came in with an old ostomy cared for it themselves. My limited experience has definitely helped me care for my husband's ostomy. I loved our hospital's ostomy nurse and the ostomy nurse my husband had. In fact, she is the one who told me to make sure we joined an ostomy group because these are the people who have the answers. They are the ones that live it every day. A nurse can have years of experience or training in ostomies but they can't know everything.

I have and I am and I continue to do so, but as I have stated in the past, in the United States, there are only eight institutions that teach Enterostomal Therapists, also known as ostomy nurses. I am asking her these questions. I am teaching, and I have been doing it for almost 30 years. It still isn't enough, that's why I'm trying to bring it to the masses. I know the title is shocking; it's intended to be to get attention, get people curious enough to actually read the article.

Up till now, I've been like a voice in the wind of a terrible storm. I like to see things improve, and while I'm still here, I'm going to do the best that I can to make it happen.

And that's certainly a possibility. I am fishing for input on this question, so thank you.

My initial title was one that was calculated to get people to actually read the article out of curiosity, but I'm certainly open to other concepts. Perhaps the first line can be, well, not hate, really.