Healthcare Workers' Discomfort with Ostomies - A Widespread Issue?

This has happened to me enough over the past year that I think it must be a real issue. On several occasions now, I have noticed how uncomfortable some healthcare workers are when it comes to ostomies. I have seen this with nurses, doctors, and even psychologists. And it isn't so much that they are repelled by the ostomy as that it makes them uncomfortable or nervous. In fact, I find myself feeling a bit sorry for them. They glance nervously at your waistline when the ostomy is mentioned. They act like they are afraid to mention it or discuss it. I don't believe I'm just being paranoid about this, have you also come across healthcare workers who are suddenly uncomfortable when you mention your ostomy?

PS--If this issue is as big as I think it is, no wonder your everyday individual is so uncomfortable with ostomies if those in healthcare are having an issue with it.

I can't help but notice how 'quiet' everyone is.....hmmmmmmmmm

The baby's sleeping.

I agree with you, Kbd, only going by my experience when I had my ileostomy surgery 4 years ago.
The stoma nurse (and the surgeon of course) were the only ones who seemed to think that what I had was a life-saving operation.

Where my room was in the hospital was quite close to the nurse's station, at times I thought I was hallucinating from the pain relief with what I heard coming out of there by the regular nurses, e.g.:

"I hate working in this ward, the smell is just revolting",
"I can't believe anyone would want this sort of surgery, I'd rather be dead".

The night staff were worse than the day staff for some reason (maybe all the deadbeats get the night shift, I don't know?), having "buzzed" one night because I needed to empty my bag (and needed assistance because of the amount of tubes/lines coming out of me) one nurse just took one look at the bag and said "I'll have to get someone else, I've never seen that before".

I was always mentally fine about having the operation and what was to follow, but honestly, I believe some of the medical staff thought I was psychotic for having a positive outlook about the whole process.

I have only had to revisit my doctor and stoma nurse on a couple of occasions since the initial operation and am forever grateful that my permanent ileostomy has made me so healthy to warrant this. I really do not want to be an inpatient EVER again and have to deal with those incompetent bastards!

Cheers and good health!

It is certainly frustrating, and I wonder about those who are very fragile about their ostomies receiving such responses. Generally, the weird responses don't bother me, they have mostly shocked me that some healthcare workers are so shook up by ostomies.
Sorry to hear you had such callous nurses.

How to Manage Ostomy Leaks with LeeAnne Hayden | Hollister

I think some of the medical staff just have a low tolerance level for some things and did not realize the extent of what their duties might be in this field. I have heard some really strange comments in and around the medical community over 47 years. Some of it is totally hilarious and some of it is really pitiful.

The first time I went to my current doctor, his nurse was asking questions about my medical history and asked if my ileo was on my right or left. When I moved my hand to show the outline on the right side, she kinda stepped back and looked like she was gonna bolt out of the room. And that was about it for the interview.

When I got out of the hospital after having my colostomy surgery, I had a different nurse come to my home each day for about 3 weeks. Not one of them checked my stoma area. They checked my abdominal incisions and the one on my back where my anus and rectum was removed, but didn't seem to want to check the stoma. They each said that the next nurse that comes will have me change my pouch to make sure I was doing it correctly and that my stoma was healing okay. Maybe I should have worn a see-through pouch when they came. That way they could see. I understand that not all nurses are as educated as a stoma nurse would be about ostomies. But I kinda felt that these nurses were grossed out by the thought of it.

Hey Ron in Mich and DH, and all!

Lots of passing the buck in the hospitals. With the exception of a few really good dedicated nurses, many of the RN's pass the 'dirty work' (lol) down the chain. It's a shame....the CNA's are usually the ones left holding the bag (oops, again) and I have found that overall they are nicer and know more about it than the RN's. Sorry, RN's, just going by my personal experience....and that's a whole bunch of it. I don't think the RN's get as much hands-on experience like the CNA's..... I have also found that the CNA's will ask the patient questions when they need to and the RN's really don't like to 'ask' (generally) since they already know all about it......... Again no issue with RN's, wanted to be one, just calling it like I see it from my own personal experience.

I would be considered one of the "fragile ones" as I didn't know I was getting an ostomy when I went to emergency surgery.
I came out and no one had explained what it was or why I had one.
About the third day at the hospital, my bag got pinched and all the content went out. I had the abdominal incision and I was terrified of the poop going into the wound. I had three nurses staring at me, I had my doctor on the phone and until they found a nurse that knew what to do, it was the longest 10 minutes of my life.
Ah, and there are no stoma nurses in Mexico outside of the public health system, so I have never met one, by the way.

It is a shame that we have to be the ones to educate the medical community. I do feel for the inexperienced ostomates. I have had mine since 1985 and have been grateful every day. I would be dead without. I was lucky to be living in NYS where medical care is good. I had a wonderful surgeon and ostomy nurse that helped me realize I was gaining my life back. I was 25 years old. It's almost fun to watch uneducated healthcare workers squirm. I had a MD look at pictures of my stoma (I had fistulas) she ran from the room and stated it must be cancer, I will get someone else. This was in my doctor's office. Luckily, I am not one of the sensitive ones.
I recommend everyone educate themselves because we cannot count on undereducated medical staff.

That is correct, Merryberry! I have been educating for 47 years and there is always a new audience. We have come a long way. I am so proud of the young ostomates who stand up and speak out. Keep it up, you guys and gals!!!!

I guess I'm on the lucky side. I have been fortunate enough to get people that care and educated when it comes to ostomies. Sloan Kettering doctors and nurses are very understanding. I've had my ostomy since 09, life-saving of course. They would tell me, "Okay, it's time to change or empty your bag." And I'm like, "It's okay. I can do it." And my fiancé is amazing. She helps me change it and actually feels the bag when we're sleeping to make sure it doesn't fill up, then wakes me to change it. If that's not love, I don't know what is. Lol. We definitely need to educate society and make people aware of what ostomies are and what they do. I say thank God we are all alive!!!

Well, I must confess I am both. I have been a HCP for over forty years. The last ten, I have had an ileo. If I may speak as a nurse, I can tell you I would bet 99% of us would rather have a nice clean ostomy to change rather than a smeary bottom! And believe me, it smells no matter which hole it came from. No matter what your socio-economic background may be, fecal matter is a great equalizer! But I want everyone to know I will gladly help any patient get clean no matter what, and most nurses feel the same way. I, when interviewing for nursing positions, make it very plain that this is a part of the nurse's job. If they have a problem with any routine patient care, then this is not the place for you (passing trays, feeding patients, answering call lights, etc.). This was my attitude 30 years before I had an ileostomy and today. Now for the other side of the coin, I have found that nurses who don't regularly care for ostomies are afraid of doing something wrong or hurting the patient. I have added this to my Med/Surg competencies list. As a result, they now are much more comfortable assisting or changing our patients' ostomy devices. There are people who I believe don't belong in healthcare, like any other profession. I would advise anyone who has to deal with this to make a formal complaint. No one should have to put up with that! Sorry about the rant!
Eddie

It seems no matter how good the nurses are, we are ultimately the ones who must learn about and become experts with our ostomies. Well-meaning home health care nurses completely mangled my ostomy after my surgery. Once they put on a wafer that was too large and leaked. Mostly, they put on wafers that were too small and mangled my stoma. It looked like it had wings from being smashed on the sides. It took me weeks to get it back in shape, and I had to figure out for myself that I needed barrier rings.

This has been a very interesting topic to read and to see how things (although very, very slow) have improved between nursing staff and patients. I had my surgery 40 years ago, was placed in an isolation ward (almost felt like the surgery was a contagious disease) and had minimal attention. This was not due to the "I don't want to take care of that" situation but due to lack of training and knowledge of an ostomy. Education is key and this is an ongoing process.

When I was in the hospital, the orderly would not help me off the dolly into the bed because she said she could not stand the smell of me. I cried for a long time. I felt so totally unacceptable. Talk about depressed! That is only one of the indignities that happen to you when you get this disease.

Correction: One of the indignities that happen when your healthcare providers are short on training, professionalism, or humanity.

Still, you cannot really lose your dignity unless you give it away, so I'm told.    
PB

I am so sorry that happened to you, he should have been fired immediately! I can honestly say I have never ever treated a patient like that, and believe me there are a lot worse smells!!
Eddie

I know it will take you a long time, if ever, to forget those stinging words lulu, but in almost every profession you will find the exceptionally ignorant, but when you're already in a state of post surgery trauma it would be unbearable. I would not want to be the one uttering those words with eddie around, probably need another surgeon in a hurry. Take care lulu and try to put this behind you, no pun intended, Ed

When I had my stoma op, the ward sister was particularly scathing to one young woman who was waiting to go down to the theatre and was crying. Asked what was the matter, she replied that she wanted her mum. I was out of range of the reply, but could tell from the tone of voice that there was not a lot of sympathy.
If I had not been attached to so many tubes and drips, I would have gone and sat beside her. It felt like a production line in a factory.
The kindest people were the trainee medics, particularly in the small hours of the night.

Thanks so much for the sympathy. She actually was fired. The nurse told her to get out of the room and don't come back. Strange, it didn't make me feel any better. I was very down after surgery. I was 50 miles away from home and they kept operating on me 3 times. By then, I had no courage or dignity left. I felt like just shoot me and be done with it. However, I wasn't so lucky.

You guys are really making me feel lucky. My healthcare professionals of all ranks and duties have been great-- they're matter-of-fact, ready to help, and absolutely not pitying. I'm sometimes actually taken aback by how (non-artificially) cheerful they seem-- my surgeon, for example, was downright proud of having done my operation with such tiny incisions, and made that pretty clear. Luckily for him, I found that hilarious rather than insensitive. Because I'm so young, some of the nurses seemed to think I was really cute or something-- this was not diminished by a bag of shit on my stomach. And I've gotten used to random men (residents and med students) striding into the room when I'm at an appointment, asking to see my ostomy, nodding decisively as if to say "Yep, that's a stoma all right," and not seeming to remember it's there 20 seconds later. Point being, in my experience, it hasn't scared anyone, and so I thought I'd put a good word in for the actually sympathetic and professional people I've dealt with. Even my physical therapy people, who probably don't deal with ostomies on a regular basis, didn't seem to give it undue thought.

After reading this thread right through, I find myself very fortunate. I must say that I enjoyed reading Eddy's post on page 1. Right from my diagnosis of stage 3 colorectal cancer in 2003, my healthcare professionals were exactly that, professional. I had a very competent Stoma Nurse who was a godsend. I was in a private room in a private hospital in Sydney. My nurses used to come into the room and ask if I needed help with anything. No, I didn't. I changed my own bags (and hated it) and wondered how my wife would feel about this latest "imposition" in our lives. That turned out to be a very unfair thought. My Beverley was more than helpful. Even today, she is mindful of my problems, of which I have many, and is always there when something goes wrong. To say I love her dearly is an understatement. My treatment in the hospital should not have been an exceptional situation; the treatment should be the same anywhere. Clearly, it isn't.
My full story is on another website but under the rules, I cannot put a link on here. My story gives more information, of course, 16 A5 pages of it. If anyone is interested, I would be happy to send a link to the story.

Take care all of you, life is precious.

Doug

I too feel so lucky. The entire nursing staff at Sarasota Memorial Hospital was fantastic with my ostomy bag - they never flinched no matter what happened. My ostomy nurse was the best, and I have been back to her with questions and problems several times.

Oh yes ... can I relate!

In the hospital just after I had my surgery ... I heard comments just like Jo and worse. Now I'm working on having an attitude that is more like Primeboy's ... but goodness it can be hard when people you expect to be 'caregivers' show that they really don't care.

Have no idea where this brutal uncaring attitude is coming from. Overwork, poor training, poor quality people, all of the above?

I guess poo isn't glamorous. And yes, poo smells. But if that was the only reason ... then wouldn't there be lots of uncaring dismissive nurses/healthcare peeps in Maternity Wards? Nope ... everyone is all smiles and hugs there.

Do you have Stoma Nurses in the States? Our Stoma Nurses are experts in Stomas. In fact, that is all they do. If I can't get to the hospital, the Nurses come to me. If I need an appointment to see them at the hospital, it only takes a few days. I have never had an adverse reaction from anyone. I don't know where I would be without the NHS.

S. Just want to add ... My ET Stoma Nurse was awesome. But she would come for training/visit and then leave of course.

The nurses were less than professional/caring were the ones on the floor at the hospital ... And those are the ones I saw most.

I agree with Beatrice. We have stoma nurses in the states and they are more competent. It is the ward nurses and non-specialty physicians we have to educate. It is up to the more experienced of us to perform this service for all future ostomates. We need to educate everyone that this is a rebirth as we have been given our lives back. I think some of the attitude comes from pity and that they could not imagine life with an ostomy, so it is easier to avoid us. Really, if someone is sensitive to smells, they chose the wrong profession.

Merryberry,

I believe this is a very serious issue that requires an effective approach to bring awareness about this topic. I'm developing a website for people with intestinal digestive disease and one of the primary purposes of this site is to improve health communication with doctors and patients. Also, to encourage the use of sensitive and appropriate interpersonal communication in the healthcare industry.

It's on patient advocacy and offers strategies for encouraging patients to take control of their health condition and educate patients on medical literacy so they can develop better communication skills when interacting with healthcare professionals.

Debra