Updated: Apr 6
Editor's Note: Healthcare professionals involved in pre- and postoperative ostomy care need to hear your voice. Please help make that happen by clicking on the survey link at the bottom of this post. The results will be compiled and submitted for publication at an upcoming wound ostomy nurses' conference (either national or regional) or in a similar forum for healthcare professionals who provide pre-and postoperative ostomy care.
Some time ago, we casually asked ostomates active on social media to tell us how much instruction they received in ostomy care before being discharged from the hospital. We did this because we had heard many ostomates complain over the years about being woefully unprepared to care for their new ostomies after being discharged. Many people said their healthcare provider did a good or okay job teaching them how to care for their ostomy. However, several people said they received little or no instruction before being sent home, greatly increasing the challenges they faced while dealing with this already traumatic event in their lives.
More than twenty people were gracious enough to respond to our question. Based on our subjective analysis (ignoring off-topic responses), 47% said they were more or less satisfied with the instruction they received on how to care for their new ostomy; 12% had distinctly negative experiences, while the rest had both positive and negative things to say.
We have reproduced some of the responses below. There have been minor corrections for spelling and punctuation.
"I had a pre-op consult and four days in the hospital with a bunch of helpful nurses and PA's."
"I was given a booklet to read the day before my surgery, and then from about day 3 after my surgery I had a stoma nurse come to see me on the ward most days to help with changing and give me guidance on how to empty and change on my own."
"I received support from an ostomy nurse in the hospital a few times, and she called to check in on me when I got home." The poster also wrote: "My ostomy nurse arranged for my husband to come in for training."
"I had a pre-op appt with an ostomy nurse about a week before surgery (cancer). She was very thorough. After surgery, I had 5 days in the hospital with a couple of visits from the ostomy nurse. She walked me through a bag change. After I got home, I had weekly checkups from a visiting nurse for 4 weeks. "
"I had pre- surgery mandatory meetings with the ostomy nurse, and every follow-up appointment with my surgeon has been accompanied by the ostomy nurse."
"I had some training in the hospital, and they sent me a nurse to change the pouch every 3 days or so for 2 weeks." Although the poster did say: "It wasn't enough training."
Somewhere in the Middle
"The ostomy nurses held a class we were advised to attend. It was a very basic class to more or less make you aware of the oddities of ostomy life and what to expect up to and after surgery."
"I had an appointment with a stoma nurse a week before surgery where they read through a pamphlet and then gave it to me. They kinda walked through taking care of it. Gave me some samples and that was it." (note: the respondent did write later that the "stoma nurses" showed them how to change their bag). But then, when I had skin damage, I was sent back to the stoma nurses who didn't help at all, in fact, made it worse."
"Literally a half hour with the WOCN, who was leaving on vacation, trying to put on a wafer the day after surgery."
"15 minutes with the ostomy nurse."
"I had 2 short (10 min?) sessions with the "colostomy nurse."
"I received fifteen minutes of instructions and a shoulder squeeze."
Several people felt compelled to seek out alternative sources of information.
"It was people on Reddit who helped with what to do."
"YouTube and forums were my WOCN's by and large. Luckily I had done a lot of preparation pre-surgery in terms of education."
"I learned from YouTube more than anything else."
"I looked at dozens of YouTube videos and read a LOT both in the hospital (on my I-pad!) and once I got home. YouTube's veganostomy. was very helpful."
"I got more help from the medical supply company I get my supplies through, and also the lady at Coloplast, who I've gotten samples from."
The above is by no means a scientific survey. However, this made us curious. Were these experiences common, or were they the exceptions to the rule? Based on the antidotal responses, we believe this is an important area of ostomy care that deserves serious attention, particularly among healthcare professionals charged with educating new ostomates about the care of their ostomies immediately before and after surgery. We strongly believe your participation will be invaluable in helping us analyze this critical issue further, and we would appreciate any insight you are willing to provide based on your experiences by taking a few minutes to complete our survey.