I Finally Saw Another WOCN

I have lived with two traditional ileostomies in my life. The first one was when I was 16 and the second (and now permanent) one was given to me when I was 24 years old. I have since come in contact with numerous ostomy nurses- in and out of the hospital. While “ostomy nurse” is a term many patients use, the correct name that refers to these medical professionals is Wound Ostomy and Continence Nurses (aka WOCN).

While some of them have been nice-ish, I never found them to get it. I know that may sound weird to some of you but that was my experience.

Bad experiences with ostomy nurses

Three examples of this include:

1. I had four separate ostomy nurses look at me like I was from outer space when I would tell them that putting any kind of cream under my flange/wafer wouldn’t allow the adhesive to stick properly. They would all go on to tell me that wasn’t how it “should” be. And while that may have been their experiences working with other patients, to not even make room for the possibility that this was the case FOR ME was upsetting- and made me feel all alone.
2. Out of the nine WOCN I have seen, only two spoke to me about all my concerns, questions, options, etc PRIOR to removing my ostomy bag. Meaning, the other seven nurses made me lay there with my stoma sticking out (and stool coming out randomly) while trying to discuss everything.
3. The majority of the WOCN I saw would insist on taking my appliance off for me. The ones I did ask to do it myself made it seem like I was a stubborn, non-compliant patient. Five of them actually came in and just ripped my ostomy bag off without saying anything beforehand.

These experiences really shook me. I was also lucky enough to be treated at a great hospital (clinically speaking; not inpatient care) which made me feel even more hopeless regarding getting any actual help and guidance from an ostomy nurse.

I decided to no longer see an ostomy nurse

I was already scared enough. I already didn’t understand a lot about what was going on with my body. I felt a huge loss of dignity. So to have multiple people who I was told could really help me, who would truly understand, etc tell me certain things, it ended up having the opposite effect. It just upset me more and after it happened with so many individual nurses, I decided I was going to figure things out on my own. If I needed medical assistance with my ostomy, it would be with my dermatologist and/or surgeon.

Fast forward a bit...

I was having huge issues with my ostomy. There were points when it was literally gushing with blood. I noticed something near my stoma that I wasn’t familiar with. And my skin was in really bad shape.

I reached out with photos to my GI and my colorectal surgeon immediately after the blood and when I noticed the “thing” (which I now know was a granuloma) next to my stoma. I spoke to my surgeon’s physician assistant about what had happened and he suggested I make an appointment with him and their ostomy nurse.

A positive experience with an ostomy nurse

Without going into detail and making this article too long, it was one of the best appointments I ever had. Not only was the PA helpful and incredibly knowledgeable about all things ostomy, but the WOCN (and the nurse he was training) was so smart, compassionate, and just understood everything I was saying. It was so refreshing.

I wanted to share this for anyone who may have had similar experiences with ostomy nurses in the past (or present). I want you to know that while it is frustrating and no one wants to go from appointment to appointment trying to find the right person (especially since WOCN aren’t all over the place!), is it nice when you find one you click with. For anyone on the fence or thinking about reaching out to an ostomy nurse, I recommend asking for a referral from a doctor you trust. Or, if you know other patients in your area, they are always a great resource too.

What have your experiences been with ostomy nurses? Let me know in the comments below!