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Life with an Ileostomy: Celebrating 6 Years!

Ostomy ecardAhh, 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 **

Share the Love & Love the Shares

Leah wants to know…

  • Did you learn something new?
  • Are you reading this post and learning that I have an Ileostomy for the first time?
  • Do you know of anyone else with an Ostomy?

Please share in the comments below!

27 comments
27 comments… add one
  • Brea Bursch March 7, 2014, 4:02 am

    I LOVE THIS!

    The candidness, the humility, the hilarity! It’s just like the Leah I went to high school with, but with a bag. Thanks for being so open – I learned a lot of new things!

    • Leah Sannar March 7, 2014, 4:22 am

      Thank you Brea! That’s my hope – is that people are learning! The humility is definitely learned through numerous embarrassing moments. :o) And the hilarity – well that just comes naturally.. I mean we are talking about poo, after all. Thanks so much for reading and for commenting!

  • Baby Making Mama March 7, 2014, 4:34 am

    Dang, I didn’t even think of the fart question, I hit almost all the rest though. Thanks for being so open! You rock!

    • Leah Sannar March 7, 2014, 5:22 am

      Hahaha! You sure did! You were one of my more thorough question askers. So thanks for the motivation! Don’t feel bad though – most people don’t think to ask the fart question until they’ve been around me a lot longer. Usually they smell a fart and then they go, “ew, was that you? …wait – can you fart?” and then the conversation ensues. “Nope, sorry – it wasn’t me. It’s never me” :o)

  • Ginger Barber March 8, 2014, 9:28 pm

    This was a great post. One of my good friends is facing this surgery and she is very nervous about it. So I sent her this link.

    • Leah Sannar March 10, 2014, 5:30 pm

      Oh good! Well I hope it helps her and let her know that I am more than happy to chat with her if she wants to!

  • Jessica - Independent Travel C March 10, 2014, 4:36 am

    Glad you can celebrate this and for being so open about your experience. This was a great post!

    • Leah Sannar March 10, 2014, 5:31 pm

      Thanks Jessica, I hope people can read this and realize that this is just something that happens and you can totally l ive a normal life. :-) Thanks for stopping by!

  • MamaRabia March 11, 2014, 3:04 pm

    My cousin’s daughter was born with some birth defects that have necessitated something like this. These are questions I’ve wondered about but don’t have the nerve to ask, so thank you for sharing! This was very informative!

    • Leah Sannar March 11, 2014, 3:12 pm

      You’re welcome! I’m sorry that is going on for your cousin’s daughter, but especially having been raised with it – she’ll be a pro and probably barely even notice it! I’m glad you find the article helpful. I’m thinking about implementing a regular Q&A on this blog. With as many questions as I get, I feel it could be beneficial… thoughts? Do you have more questions that I didn’t answer?

  • Karen April 16, 2014, 9:36 pm

    thank you…my best friend might have to have the surgery and your positive outlook and answers to all those questions really helped!
    congratulations on 6 years!

  • Janice July 8, 2014, 1:05 pm

    I have had a ileostomy bag since May 14th of this year. It was very scarey at first but as I learned more about how to care and live normal it has become easier. The more people can read about the bags the less scarey it is. Hopefully in the very near future I will have mine removed but I will never forget those who have them. Questions are Ok. The more people know the more they realize you can live normal with a bag. Thanks for your blog.

    • Leah Sannar July 13, 2014, 11:18 am

      Hi Janice, thanks for your comments! I wish you luck in having your Ileostomy removed! I’m so glad you’ve been able to accept it and get accustomed to having it. Yes, there have been a lot of brave IBD’ers out there helping to raise awareness. It’s such a great community to be a part of, and I’m so grateful for the many ways that it has enriched my life. Most importantly though, I’m grateful that the Ileostomy saved my life. I’ll never resent it because I’m here and alive. :o)

  • Dawn January 27, 2015, 7:09 pm

    I was googling and I stumbled across your site. I’m clicking all of the links to your other posts as well. Thank you for your honesty and openness with this subject. My daughter was diagnosed with Crohn’s at the age of 4. She’s 10 now and long story short, still having issues, not growing and to top it off, they think that maybe she has UC vs. Crohn’s. One option we’re considering is a temporary Ileostomy to allow her colon to heal. Which is a bit scary for us and even more scary for her. I’m doing all the research I can to see what daily life would be like for her. So again, thank you!
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    • Leah Sannar February 6, 2015, 4:16 pm

      Hi Dawn! I’m sorry to hear about your daughter’s diagnosis. It’s especially hard when they can’t seem to nail down exactly what she has! I hope you found some inspiration and comfort while reading through my posts. Crohn’s & UC can be incredibly difficult, but there is always light! Stop by anytime, and feel free to contact me if you have any specific questions. I’d love to help if I can!

  • Melissa palys February 9, 2015, 5:09 pm

    Thank you for this blog, it was great to read…especially the sex part. I have had my ileostomy for only 6 weeks and I’m worried I’ll never be comfortable enough. Do you know of any online support groups???

    • Leah Sannar February 11, 2015, 1:03 pm

      Hi Melissa! It took me a while too, before I felt comfortable enough in my own skin. Hang in there, you’ll get there. There are a lot of online support groups on Facebook. If you search “Crohn’s Disease or Ulcerative Colitis” you’ll see lots of communities pop up, and they are amazing!! So much support out there that I didn’t even know existed while I was sick and really in need. Definitely reach out, it’s a great resource.

  • irene March 27, 2015, 11:14 pm

    hi leah
    great post…. i’m so glad that you have this blog and these questions and answers – my cousin just had an ilesotomy a few days ago(colon cancer) and i didn’t want to bombard him with questions as he is taking it quite hard – your answers have been great and answered my questions fully
    i wish you the best of luck with everything in the future and know that you are making a positive difference for interested people – i love your explanations especially the comparison of it is just poop coming our of the stoma instead of your bum….. puts everything into perspective and i hope people with ileotsomies do not feel any different – they should all be proud of having a surgery which will make their life more pleasant and changing/emptying bags will just become routine as many other things we do throughout the day – one advantage i see is you don’t have to find a bathroom right away when you have to go ! cheers to you

    • Leah Sannar May 4, 2015, 2:52 pm

      Thanks Irene! The ostomy surgery is definitely a big adjustment, but especially if you’re dealing with something like cancer, it’s the obvious answer! I sincerely hope your cousin is able to make peace with his new lifestyle. He’ll be a pro in no time and life will go on just like normal! Keep in touch!
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  • Harold January 25, 2016, 8:50 pm

    I am at the end of my first week with a temporary diverting loop ileo and so far it hasn’t been terrible. It’s a definite learning curve for me but it certainly beats a 7cm colorectal mass and the alternative. I find that hearing from/about others helps me to understand what the next 10-12 months will look like and therefore help me understand what I’m dealing with. The first week has sucked due to the surgical pain and gas pains and of course dietary changes but it certainly could be worse!! Thanks so much for sharing!! God bless!!

    • Leah Sannar January 28, 2016, 10:27 pm

      I wish you the best of luck Harold! Thanks for sharing with us. I hope all goes well for you. :o)

  • Jeanie Tyler July 13, 2016, 9:00 am

    Thank you I needed this… About to embark on a new life. Better than the alternative huh? :-)

    • Leah Sannar July 13, 2016, 5:27 pm

      From the outside looking in, I can understand how some might not think it’s better than the alternative… but it really, really is. And if you’ve been there and lived that life, you know it most DEFINITELY is. I wish you the best of luck! Let us know how it goes. :o)

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