Ostomy = Old news

The biggest hurdle, in my opinion, in getting an ostomy is simply becoming comfortable with it. It takes time to figure out how to take care of it and how to prevent/deal with leaks. It’s not overnight that you learn how fast your bag will fill up and how often you should empty it or change it. And it’s really not easy to get to the point that you forget you have an ostomy. But for me, that’s been the goal.

From the beginning, I hoped I that I could get to the point where I didn’t really think about having an ostomy. That I could forget it was event there. Obviously, you are constantly reminded of having an ostomy just by feeling it getting heavier and having to empty is multiple times a day, so you can never actually forget about it. I am simply referring to being in a place where doing those things are just second nature and you don’t actively think about that fact that you poop in a different way than other people. And there are times that I get to that point. It’s definitely not every day or even all day, but there are plenty of times that I just go about my business and take care of it when I need to and it doesn’t actually occur to me that most people aren’t dealing with the same thing every day.

But now, I’m not so convinced that’s what my goal should be.

stephanie hughes ostomy crohn's disease ulcerative colitis inflammatory bowel disease ibd ostomy bag blogThere have been times that I have gotten so busy and distracted by everything going on around me that I stop taking my ostomy into consideration and essentially just forget that that it’s even there. So that’s great! That’s the dream, right?! But, it’s actually gotten me into some trouble at times.

I have eaten hard to digest foods that I have not spent time chewing. I have had more wine to drink than usual and have not made up for it by drinking more water. I have let a leak under my ostomy bag sit for longer than I should have since it wasn’t leaking outside of it. When I do this, it often leads to a mild blockage or nausea or multiple bag empties that usually come along with not thinking things through. I might have to deal with painful and irritated skin around my stoma. And I could have avoided these things if I had just taken my ostomy into consideration in each of these scenarios.

I’m beginning to think that forgetting about my ostomy should not be the goal. But rather, coming to terms with it and accepting it for what it is: a part of my life. Rather than trying to forget about it, maybe actively thinking about it during the day will just serve as a reminder than I am different, and that’s okay. I mean, let’s be honest, no matter what you do, you will always have an ostomy bag hanging there as a constant reminder that, oh yah, you have an ostomy. But you know what? Maybe that’s not such a bad thing after all.

6 thoughts on “Ostomy = Old news

  1. Anna Doyle

    I hear ya… being comfortable with the ostomy is where we wanna be. I personally think it is so much better than dealing with the chronic diarrhea from my Crohn’s. I still have to think about the bag, but I don’t let it negatively impact me. I am healthier now than I think I’ve ever been, and it is just another part of me. 🙂 I do need to watch my beer consumption though, because the gas production can sometimes become dangerous at night. I wake up feeling like i rolled over on a football. Happened once with a bag i was trying out, that didn’t have the most secure closure… made quite the mess to clean up…. :/ But, we just have to stay positive, learn to laugh, and love ourselves through it all. Thank you so much for sharing. 🙂

  2. Joan

    Living with an ostomy has not been easy but neither was the Crohn’s. Staying positive has always been my goal for the past 7 years living with my ostomy. If I can get through 1 day then 2 days. Nothing in life is easy but the alternative is not an option. #1dayatatime

  3. Angela

    I’m having my surgery on May 14, and I am constantly already reminding myself that it will take months, even years, to be comfortable/used to my ostomy. I’m promising myself that I won’t make any judgments about it for at least six months.

    1. Emma

      Angela, don’t worry you will get used to it soo quickly. I had mine fitted a year and a half ago and at first I thought I’d never not think about it. And now if never be without it! Yeah there’s the odd time I think about clever underwear to get the most out of a pretty dress but it’s the best thing I ever did. You will get there. Xx

    2. Stephanie Hughes Post author

      That’s a great plan, Angela. The fact that you’re going into it with that sort of mindset tells me that you’ll probably adjust even faster. Best of luck with your surgery!

  4. Zoe wilkinson

    I thought it was the end of the world when I woke up to having a colostomy bag😣😣 but it saved my life I am so very grateful I did wake its part of me now leaks smells and how ever noisy it is am alive 😁😁


Sit down, stay a while. I'd love to hear from you.