Healthcare Workers' Discomfort with Ostomies: A Widespread Issue?

I too agree that this is a serious issue. Over the past year, I have been in the hospital 6 times. I have had some very good nurses but for the most part, I have found the RN's to be unsympathetic and also hesitant to help when I needed assistance changing or emptying my bag. I buzzed my nurse one night and asked for assistance and was told that I needed to learn how to handle my bag on my own and she just walked out. I buzzed again and she came back. I told her I knew how to change/empty my bag; however, I had just had surgery and had so many tubes going every which way, I was unable to handle the bag by myself.

It has been very difficult for me having a colostomy as I am embarrassed by the smell and just having someone help me take care of cleaning up after a bowel movement. It doesn't help when the healthcare worker is visibly upset/shaken having to deal with my colostomy.

I was also told by a family member that they would rather be dead than to have a colostomy. That didn't make me feel too great either. Oh well, just trying to live with this the best way that I know how.

The amount of ignorance regarding ostomies has continued to shock me, especially in the healthcare community.

This is for Justgran and everyone else faced with insensitive relatives. They have never been faced with the decision and don't realize most would choose to live.

Thanks merryberry, sometimes I feel so alone when dealing with this. I do appreciate the support and response I receive on these forums as some days it's the only thing that keeps me going. Take care.

I am also a HCP and have found adequate responses to help with post-op ileostomy care. However, the involuntary facial expression with disgust does occur. I am very blunt and let the care assistant know if this is not something they can handle, to leave. Nobody needs to see that and I agree whether stool comes from front or back, it is still stool. If people want to work on MED/SURGE units, training should be mandatory to learn ostomy and chronic disease and post-op care. I have been a patient and see the lack of empathy in some nursing practice and now that I am in the field, I point it out and don't accept that. Unfortunately, empathy is not something that can be taught, and some nurses just don't get it.

Well said.

Wow, I am so sorry you've had so much trouble. I confess, I'm always taken aback by the attitudes of many nurses, like you're bothering them with your presence and your need for care. I feel like, why did they become nurses in the first place if they didn't want to help people?

That being said, it's important to note that I've had far better care from more nurses than the bad stuff in this last LONG inpatient stay, and that was when I was first suffering from my worst UC flare up since diagnosis, and then a long, complicated recovery after my colonoscopy/ileostomy. I was very lucky to be under the care of Dr. Neil Hyman's surgical team at Fletcher Allen Medical Center in Burlington, VT. The nurses were very involved and educated in my stoma and wound care. They even seemed to be trained and prepared for the very difficult time I was having with psychological adjustment. Of the dozen or more nurses and doctors I dealt with, there was literally one who had a terrible attitude and did the bare minimum that she could to get by, let alone coming even close enough to me to see my stoma!

It's the luck of the draw, I guess, because I don't know a way you can find out how much experience the general staff knows in a particular hospital when you're doing your research!

Good luck to you. I hope it all gets worked out in the most positive manner possible for you! Remember, I don't know about you, but I myself had the very same feelings of resistance and disgust about my new plumbing in the beginning. I still struggle some days. I get tired of having to spend so much time in the bathroom, or outside worrying about my appliance and how it's going to torture me next.

I was a healthcare worker...CNA...at a hospital here in VA. I didn't hide the fact that I had an ileostomy because I was always going to the bathroom. When we would see a patient with an ostomy for wound care, the nurses and other aides would give these looks amongst one another like OMG, the smell, the site, yuck! Because I have had mine since 1971, I would give the RN's instructions as they would ask for it. Finally, it got to the point that whenever there was an ostomy patient that needed attention or just to talk, ask questions, they would send for me to intervene. I loved it as the info and hands-on at ostomy care was right from the horse's mouth. If I couldn't answer the question or if they wanted support groups, you name it, I would research these and get back to them BEFORE they left the hospital.
Some people show their ignorance with body language or when they open their mouths....that's their cross to bear! Most of us ostomates wouldn't be here if it weren't for the surgeries we've had. We can BUCK UP when the others *^%* UP!!!!!

I just read your post and it brought back memories that I fight with myself to forget. Four years ago, I had the major surgery for cancer of the colon and was very sick in ICU and on a respirator for 10 days. I had to go to a rehab nursing home in Florida and talk about a bad experience, I had it. I couldn't walk, never mind know how to change my colostomy, and was never shown how to do this. When the bag would leak, someone would come in and walk out and leave me lying in poop all over. I cried and cried, and then the worst happened, as a nurse's aide that was in charge of taking care of me started calling me the bag lady so no one wanted to help me. I had the bag come off during physical therapy so many times and suffered such embarrassment you couldn't believe it. I was sent home having never been shown how to change the appliance, but they gave me a piece of paper to follow instructions on. This was in Florida, now I am in NJ in remission but still lots of problems with the bag and terrible sores all the time. No one up here wants to look at the area of problems saying they don't want to embarrass me. What a joke life can be, so I am so happy when I can read how well people are doing. Good luck to you, Hometown.

These kinds of people should not be in the healthcare business.

What a joke indeed. They don't want to "embarrass you" by treating your painful medical problem? I cannot believe stories like these. Like I said earlier in the forum, I never get away without my gastro doctors checking the site for any immediate visible issues, which they do in the most nonchalant manner imaginable. That is the only way a physician should conduct him or herself. Reading about the behavior you've witnessed makes me so angry I don't know what to do with myself. You have a right to better treatment than that. Are you able to consider switching doctors? Because I would try every one available until I found someone decent. Good ones are out there.

Hi everyone,
These are great posts and I appreciate reading each one. I remember early in my surgical recovery, 2-3 months post-op, I went back to work. Many of my fellow workmates did not know what type of surgery I had. They knew I had UC and was really sick, but that was it. When I returned to work, one person said to me, "Thank goodness you did not have to get a colostomy, they are awful and smell terrible - my dad had one." I chuckled to myself and thought....if you only knew. I also had a few people ask me point blank, "Do you wear a bag?" The question was so rude and none of their business. I would say I had a resection and a great surgeon who worked miracles. The pouch topic was never addressed again. I was lucky while in the hospital. The nurses who helped me were very knowledgeable with ostomy care and getting me back on my feet. One nurse would say to me, "You are doing a really great job," and encouraged me. I was happy and appreciative for the support. The home health nurses were also terrific. I had one who was funny and made me laugh. There was not much laughing happening during that period in my life. I laugh much more today. My husband was also right there learning about ostomy care. He and I would read the literature, making sure I was doing everything correctly. We had a few mishaps, but with the help of other ostomates, we were back on track again. We are brave and we are survivors choosing life with an ostomy. It is a different way but doable. Lastly, regarding odors, I use an ostomy deodorant to help lessen the smell and it really helps. Just wanted to pass it along. Thank you, everyone. Have a nice weekend. LH.

I would love to talk with anyone who is going through this. I have no one to ask questions of and am totally devastated and scared... It says not to post contact info here, so where can I go to chat with someone?

Hi Idowanna, saw your post today. Are you a new ostomate or facing possible surgery in the future? This site is a terrific resource. Everyone here has great ideas and different approaches to life with an ostomy. For me, when going through my illness, it was a very frightening time. I was happy and relieved to find this site and knowledgeable people living life with an ostomy. I am thankful every day for the worldwide connection. Feel free to post your thoughts, concerns, and/or questions. There are those who have had the same questions and may be able to offer some direction. Take care and keep posting. LH

Thank you, Lady Hope. Yes, I am a new ostomate, but I am fortunate enough that I will be able to have it reversed. I ended up with this after a bout with diverticulitis again and then after being on IV antibiotics for 2 days, everything abscessed and burst. I woke up to my worst nightmare. I was the mom that had to tie a towel around my face to change my baby's poop diapers... Needless to say, I was traumatized. My question at the moment is, has anyone ever heard of having a clear/mucousy bowel movement 3 months after a colostomy? The doctor said it was odd that it usually happens within the first few weeks. I am terrified. I am due for reversal surgery and am now experiencing what would seem and feel like bouts of irritable bowel, running to the bathroom, and having clear fluid come out. I am so distraught right now and I have no one to ask, so has anyone here experienced that? I had a colonoscopy last week in prep for the reversal, which they said the bottom part was mucousy and they could not see. They sent me for a CT scan, found some colitis above but didn't see any reason for the bottom being cloudy. I would so appreciate any input from those of you who have been here. I have no one here to ask and no support groups either, and the doctors aren't very helpful.

Hi Idowanna,

I really don't know about colostomies as I have an ileostomy due to UC. Why aren't the docs offering some explanation as to why you are experiencing what you are experiencing? How about seeing another doc, maybe as a second opinion or go directly to the ER with your concerns. The ER doc may be able to offer some information as to why this is occurring three months after surgery. I would bring my chart or any paperwork that I may have too pertaining to output. I may be tempted to use the internet, but it seems I gather the "worst case" information rather than the simple "this could be why" information. Good luck and keep posting. Maybe someone with a colostomy has had a similar experience and will reply. LH

Hello. I am due for a reversal in about 6 months (Stage 3B Rectal Cancer). I am experiencing "phantom dumps", which means things are still working back there. I have gotten used to my "baggage". I see it as I now have baggage to carry around everywhere I go. I named mine Jake.