This post appeared on Life, Lemons and Lemonade.
I always get this blank stare that says, “Oh man, I have so many questions… I really want to ask, but I don’t want to offend her.”
I find that with my friends, one of four things tends to happen:
- They were around when all this went down, so they know the drill.
- They met me after it all went down, but have no shame and will straight up ask me whatever is on their mind.
- They are longtime friends and feel as though they haven’t been in touch enough to ask me such intimate questions.
- They are weirded out by the whole thing and don’t want to know.
I decided to a little question and answer session, gathering some of the most common and entertaining questions I've been asked about my ileostomy. So here we go, in no particular order:
Q: “Can I see it?”
A: Yes. I’m more than happy to show it to you. Most people have all these ideas built up in their mind of what an “ostomy bag” would look like and their imagination runs away with them. Just ask me. And then you can rest easy.
Q: “Do you pee normal?”
A: Yes, I pee normally. An ileostomy has nothing to do with the urinary system.
Q: “How does the ostomy bag stay on?”
A: The ostomy bag (some call it a pouch) has an adhesive wafer that sticks directly to the skin on my belly with a hole in it for the stoma to come through.
Q: “Can you ever take your bag off?”
A: Yes and no. I take it off in order to replace the system (wafer/bag) about every 3-5 days and occasionally while I shower. Otherwise, no, I cannot take it off since I can’t control when I “go.” An ostomy bag must be worn at all times.
Q: “How do you empty an ostomy bag?”
A: It has an opening at the bottom of the bag, closed using a clip. I remove the clip, empty into the toilet bowl, wipe the end clean and close it. It literally takes me seconds. Guaranteed, when I go into the bathroom, you don’t even know I’m doing it.
Q: “Does it smell?”
A: Heck yes, it smells. All poop does. I’ve often thought that it shouldn’t smell as bad as regular poop since it doesn’t sit in your intestines for as long. That’s not the case. It smells as bad, usually worse, than regular poop. But there are products that help reduce or eliminate the odor, and the ostomy bag itself does not smell.
Q: “Do you still feel the urge to poop?”
A: No, that feeling has gone away. And since the stoma has no feeling, I can’t feel anything actually coming always. However, I can tell when my bag is filling up.
Q: “Do you miss pooping like a normal person?”
A: Not even a little bit. You need to understand that with active Crohn’s disease, I never pooped like a normal person. I was in severe pain every time I sat down. So no, I don’t miss that.
Q: “Can you have sex while wearing an ostomy bag?”
A: Yes. This took me a while to learn due to my own hangup – feeling like my bag wasn’t sexy. I spent a lot of time and energy trying to cover it up. But trust me, if you’re even remotely interested in the sex you’re having – you won’t even notice the bag.
Q: “Do you still fart?”
A: One of my favorite questions. Technically, I don’t fart the traditional way. Sometimes though, my stoma does release air into the bag (at the most inopportune times) which makes a noise. I have no control over that, it’s sometimes embarrassing.
Well, have I answered most of your questions? Have I blown your mind? I hope not.
I hope after reading this post, you realize that I am 100% open, and welcome any and all questions you may have about living with an ileostomy. My goal is to help raise ostomy awareness and get rid of negative stigmas. I want people who face this surgery to know that it’s not a death sentence.
I’ve literally heard people say they’d rather die than have ostomy surgery. It’s so silly! Yes, it’s an adjustment. Yes, it has its challenges. Yes, obviously life without one would be easier (for people who don’t suffer from a severe chronic illness). But if this is the hand you’re dealt and surgery is the only answer — I say DO IT! Life goes on... a very normal life even!