Frequently Asked Ostomy Questions

Let’s face it, ostomies are weird. When you really think about it, it's a piece of your intestines sticking out of your stomach with a bag stuck to you collecting waste. It is so strange. And inevitably, when you tell someone you have an ostomy, follow-up questions are going to happen. Five years in and I’m still getting ostomy questions. These are my latest favorites.

“Does your ostomy smell?”

Ostomy bags when worn correctly won’t have an odor. The only times I notice odor is when I do a bag change. This is a combination of hydrocolloid breakdown and the fact that urine is not sterile and is being held in a plastic bag. There will be a smell. I also occasionally notice this same specific smell if I’ve spent a little too long with the same bag.

“Do you ever think your ostomy is gross/weird?”

Yes, yes I do. Especially when I do bag changes. I’m 5 years in and, to be frank, it is still a very strange routine to go through. Between changes, I pretty much don’t think about or notice my ostomy bag. But something about taking that bag off, cleaning/prepping the skin, and placing my new bag is just a little icky to me. I can’t really explain it. But you get to a point where it is like any other hygiene task. You just get it done. I think seeing the bag off for those brief moments is a stark reminder that I have an ostomy, but I will say that long bag-free showers are the best.

“Do you wish you had chosen a different urinary diversion?”

My answer to this is a mixed bag. Yes, but I don’t regret my decision. I was so very sick and in pain when I was diagnosed. I specifically chose the surgery that would be shorter, statistically had the least complications, and in theory, had the shortest recovery time. I just wanted the surgery done and to feel better. I was really worried about complications. But I sometimes wonder if I would have been equally successful with a neobladder. The vanity in me really hates having a bag sometimes. In a dream world, I wish I had been diagnosed sooner and would have been able to preserve my bladder.

“What do you wish you had known before getting your ostomy?”

I really wish my team had better prepared me for life with an ostomy. Sure I was taught proper care and how to maintain my ostomy on my own. But I really didn’t get any resources regarding the living part. How to support my ostomy and abdomen to prevent hernias, and how to manage the cost of supplies even with insurance. How to troubleshoot leaks and skin issues. And honestly being connected with other ostomates would have gone a long way toward filling in the gaps my ostomy nurses didn’t educate me on.

Connecting with other ostomates

I think one of the wonderful things that is happening in the current age of social media is that more and more ostomates are sharing about their ostomies and how they live their everyday lives. The average person is becoming more familiar with what an ostomy is (even if they mix up the different kinds).

This has opened the door to more conversations and questions that go beyond the surface level of “Do you still poop?” or “Can you have sex?” People are more educated and willing to learn about the amazing individuals who navigate life with a bag.