Life with an Ileostomy: Celebrating 6 Years!

sannarBy Leah Sannar

Ahh, don’t you just love exploring the lighter side of life with an ostomy? Anyway – guess what? This month marks my 6th “Ostoversary.” In case you’re new to this fabulous term, which I know you are because I just made it up, it’s a combo – Ostomy/Anniversary. This is a big deal you guys! I can’t believe time goes by so quickly and that I’m already celebrating 6 years! And I do use the term “celebrating” on purpose, because that’s exactly what I’m doing. I’m celebrating. Sure, living with an Ileostomy has had its challenges. And they are definitely challenging; I don’t mean to downplay them. But when you put those trials next to the ones I faced with active Crohn’s Disease – they feel mild, even easy. Maybe not in the moment… but they are 100% more desirable to me, than going back to life without an Ostomy. (Hear more about how I ended up with an Ileostomy here.)

People are always so fascinated with me when they find out about my Ileostomy. 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.” This is especially the case with my new friends. My new friends always look so perplexed. However, I find that with my older friends, one of four things tends to happen:

#1) They were around when all this went down, so they know the drill.

#2) They met me after it all went down, but have no shame and will straight up ask me whatever is on their mind. (I love these people.)

#3) They are old friends and feel as though they haven’t been in touch enough to ask me such intimate questions.

#4) They are weirded out by the whole thing and don’t want to know. (I don’t know who these people are, but they are probably out there.)

So, in celebration of my 6th Ostoversary, I decided to a little Q&A session. I do realize that this is not a live Q&A, since it’s a blog post… but I’ve gathered some of my most common and most entertaining questions for you. The friends who asked me these questions, will of course, remain nameless. :o)

Here we go, in no particular order:

#1) Q: “Can I see it?”

A: Yes. Ask me anytime. I’m more than happy to show it to you. Most people have all these ideas built up in their mind of what a “bag” would look like and their imagination runs away with them. Just ask me. And then you can rest easy.

#2) Q: “What is a stoma?”

 A: A stoma is a small opening in the abdomen where they pull the intestine through, allowing it to empty into a bag. It’s basically rerouting the intestines to empty through a hole in your abdomen instead of your bum.

#3) Q: “Does your stoma hurt?”

A: No, the actual stoma itself has very little feeling. The skin around it however, does tend to get irritated.

#4) Q: “Do you pee normal?”

A: Yes, I pee normal. The Ileostomy has nothing to do with how I urinate.

#5) Q: “How does it stay on?”

A: The Ileostomy bag has an adhesive wafer that sticks directly to my skin with a hole in it for the stoma to come through, allowing it to empty into the bag.

#6) Q: “Can you swim with your bag?”

A: Yes, I use a waterproof tape around the adhesive so it will stay on while I swim.

#7) Q: “How do you shower?”

A: I can use that same waterproof tape around the adhesive if I want to shower with my bag on. This is what I typically do if I’m anywhere other than my home, for convenience’s sake. However, sometimes the skin around my stoma needs to breathe and be washed thoroughly, so I’ll shower without the bag on, then replace it when I’m done.

#8) Q: “Do you change your bag every time you go to the bathroom?”

A: No, the bags are made to be emptied into the toilet when you sit down, and can be worn for several days before needing to be replaced.

#9) Q: “How do you empty it?”

A: It has an opening at the bottom of the bag. I sit down on the toilet, empty into the bowl, typically while I’m peeing…wipe it and close it. It literally takes me seconds. Guaranteed, when I go into the bathroom, you don’t even know I’m doing it. It’s not a big production.

#10) Q: “Does it smell?”

A: Heck yes, it smells. 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. And yes, this is very embarrassing. Especially in small gatherings with bathrooms close by. The bag itself does not smell and you can’t smell it on me.

#11) Q: “Do you still feel the urge to poop?”

A: No, that feeling has gone away.

#12) Q: “Do you know when you’re ‘going’?”

A: Not typically. Since the stoma has no feeling, I can’t feel it actually coming through. However, I can tell when my bag is filling up.

#13) Q: “How often do you have to empty it?”

A: This varies depending on eating habits, but usually I empty every time I pee. If my bag is filling up and I don’t have to pee, I’ll make a special trip. I’m not a fan of walking around with “stuff” in my bag, so I’ll usually prefer a trip to the bathroom over a full bag. This also helps to be discreet; people notice a full bag a lot easier than an empty one. :o)

#14) 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.

#15) Q: “Can you have sex while wearing an Ileostomy bag?”

A: Yes. This took me a while to learn due to my own hang up – 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.

#16) 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 and occasionally (and always at the most inopportune times) it does make noise. This typically happens during prayer in relief society, or somewhere just as embarrassing.

#17) Q: “Do you still have a butt-hole?”

A: No. Typically when you get a Colostomy or Ileostomy, your rectum is sewn shut in an effort to avoid infection.

#18) Q: “Can you ever take your bag off?”

A: Well, I take it off when I change it, obviously and occasionally while I shower. Also, sometimes if my skin is particularly irritated, I will lay in bed with a box of baby wipes and a Ziploc bag (since I can’t control when it “goes”) and let my skin air out for about 30-45 minutes with some Neosporin on it. Otherwise, no I cannot take it off. I can’t control it, so a bag must be worn at all times.

Well, have I answered all your questions? Have I blown your mind? I hope not… I hope after reading this post, you realize that I am 100% open, and I welcome any and all questions you may have about life with an Ileostomy. My #1 goal is raising awareness and getting rid of negative stigmas, so that people who face this surgery in the future can see that it’s not a death sentence. I’ve literally heard people say they’d rather die, than have this 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 severe Crohn’s Disease. But when that’s the hand you’re dealt and the surgery is the answer – DO IT! Life goes on, a very normal life even! That’s my message. I hope you’ll help me share it.

In closing, I’d like to share with you my very favorite story of what happens when the uninformed, get informed. I was staying with a friend, who again – shall remain nameless, and our contact over the years had been sparse at best. It’s only recently, that we’ve come back into contact and started spending some time together. While I was at her house, she started asking questions – like people always do. I love it, I really do. I love answering questions, and I love seeing their faces as they start to figure out what it’s all about. Finally, after our Q & A session came to a close, I could see a sort of relief come over her, as she says to me, “Oh, okay… all this time you were explaining it to me – I was picturing you emptying your bag into my sink.”

And that my friends – is why I’m raising awareness. I love her! I love that she was so honest with me! That she would admit such a misconception… It just reminds me that I’m here for a reason and that what I’m doing matters. I can only imagine what she must have been thinking about me staying at her house!

Education matters – please spread the word. Share this post. You never know who could benefit from learning about life with an Ileostomy.

** Leah **

Leah Sannar is a Wife to Tim, a Mother to Dominic, a Cancer Survivor, a lover of all things music and she lives each day with Crohn’s Disease. This story was originally published March 7, 2014 on her blog Life, Lemons & Lemonade.  Follow Leah on Facebook and Twitter.