Breaking down the ostomy barrier

stephanie hughes out of the bag colostomy ileostomy crohn's disease ulcerative colitis inflammatory bowel disease ibd ostomy blog stolen colon

Ostomies get a really bad rap. Most people you ask about an ostomy will likely not even know what you’re talking about, and those that do will probably say something like “gross” or else feel sorry for you. I remember going to a doctor one time and was going through my medical history with the nurse and when I said I had an ostomy, she said, “Oh I’m sorry. ” And I was like, “I’m not!”

I hear people all of the time with Crohn’s disease and ulcerative colitis, myself included, complain about the stigma that comes along with having an inflammatory bowel disease. You have to deal with comments like, “You don’t look sick” or “Isn’t that where you have to go to the bathroom a lot?” And it’s true, there are a lot misconceptions that IBD is just a bad stomach ache or that it isn’t that bad just because you don’t match most people’s definition of “being sick.” But what frustrates me is that the same people who complain about being stigmatized for their bowel disease are the ones who are passing judgement on having an ostomy.

I can’t tell you how many times I have come across people who think that having an ostomy bag would be “the end of the world” or even worse, they’d “rather die” than have one (Full disclosure: The reason I started writing this post was because I had someone say that to me). Seriously, people? Having an ostomy sounds worse than death?

I am always the first to admit that I was absolutely against having to get an ostomy bag. I was convinced that running to the bathroom 8-15 times a day, having to wear large pads every day, sitting in my own filth for 20 minutes as I drove home after not being able to hold it in, and living with the risk of colon cancer in my future was totally worth it in order to not have an ostomy bag. I was wrong.

Now, I am not by any means saying that having your colon removed is for everyone. I’m also not saying that you shouldn’t do everything you can to hold on to your colon, if that’s what you feel is right for you, because God knows, I did. But if I knew all of the things that I know now, it wouldn’t have been nearly such a devastating decision.

I’m also not saying that if you’re living with an ostomy that you have to be totally OK with it all the time or think it is the best thing in the whole entire world. I’ll be the first to admit that it’s not always easy living with an ostomy. But I also realize that my ostomy saved my life and that having one does not make me gross or less of a person in any way.

Just like living with Crohn’s disease and ulcerative colitis, living with an ostomy is what you make of it. You’re, right, it’s not an ideal situation, but there are a lot of less than ideal situations in this life. And if you make the decision to live a full, beautiful life with an ostomy, then you can.

I feel like I have been fighting my whole life against assumptions and lack of information about Crohn’s disease. But I feel like I was not even close to prepared to deal with the stigma that I deal with regarding having an ostomy. So let me make a few things clear:

I am not a smelly old grandpa that everybody hides in the corner.

I did not have to throw out my entire wardrobe for over-sized, baggy sweats.

Nobody knows that I have an ostomy expect for the people I tell (which I guess in my case is everyone.)

There are no activities that I haven’t been able to do since getting an ostomy. In fact, as you know, it has given me the opportunity to do things that I wasn’t able to do before.

I am happier and healthier since getting my ostomy than I can ever remember being in the past.

I still feel sexy.

My point in all of this is to help people realize that there are a lot of unfair assumptions made about people. We all have something that we deal with, and whether yours is Crohn’s/colitis, diabetes, depression, anxiety, obesity, or whatever it is, people who don’t live with these conditions aren’t ever going to fully understand. So do your best to educate yourself. Actually talk to people who live with them about it – that’s something I never did until I had actually decided I had to have surgery. You know how difficult it is to live with the stigmas that are put on you, so don’t continue to perpetuate the stereotypes.

29 thoughts on “Breaking down the ostomy barrier

  1. Deborah Hining

    You know, everyone has something , large or small they have to deal with. This post is good–you bring to light that no one has a perfect life and we all just live with and can make the most of the cards we’ve been handed. I have learned that “normal” has a very wide range!

    Reply
    1. Stephanie Hughes Post author

      Yes! Life can always be better, but it could always be worse, too. It’s really all about what you do with what you’ve got.

      Reply
  2. Molly B

    Over the year you have educated me! You are amazing, as I have said in the past, and beautiful!

    Molly

    Reply
  3. Tami

    YES, YES, YES! Thank you! I’ve had an ileostomy for 27 years (since I was 19) and I work out, am a mom, and have done things like scuba diving, indoor sky diving and jumping off cliffs in Jamaica. Is it always sunshine and roses? No, but I’ve had one minor flare in 27 years.

    Reply
    1. Stephanie Hughes Post author

      Tami, you are a great testament of someone who knows what it’s like to have an ostomy for the long-term and not letting it slow you down. Thank you for sharing!

      Reply
  4. scottcsexton

    Well ladies….I am a man of 41…fell off of a building and the ostomy that I received was just a bit of the damage to my body. It is something that I make jokes about. Learning to walk to the bathroom to deal with it myself was a milestone. Now….as it is…nobody can blame me for a fart….not a random one anyway. If I pass gas there is ABSOLUTLY no way for me to blame it on the dog….. We who have a bit of a humor…find this funny….if for no other reason other than personal gratification …..know this. We with ostomys will win the fart war…..have fun with your friends.and family.

    Reply
  5. abbynyc

    Here, here! My ostomy gave me back my life and I couldn’t have been happier with it. I’ve moved to a J-pouch but I always say that if I had to go back to the ileostomy, I would and I would never look back.

    Reply
    1. Stephanie Hughes Post author

      That’s awesome, Abby. I’m glad the J-pouch has been able to work for you, but it’s also good to have the support of someone who knows what it’s like.

      Reply
  6. Dave Rudzin

    Stephanie,
    As I have always said, the ostomy is what a person has, it is NOT who they are. If you or someone else are a beautiful, sexy person, then you are now a beautiful, sexy person with an ostomy. The ostomy has given a person their life back, and has freed them in many cases from the bonds of a bathroom as well as disease. I know many people with ostomies that are sexy, beautiful and gorgeous. Again, it is about the person, not about the ostomy !!!

    Reply
  7. Tom

    I have IBS and no pain, but really bad gas and diarrhea, recently 5-6 times a day. I was under a gastro Dr’s care for over 2 years. He tried 3 different sets of drugs, none of which worked. I have an appointment with another Gastro Dr at a nearby University Hospital soon. I’m thinking he’ll probably say an ostomy is the only answer. I exercise at a health club, bike, walk, run, etc. I’m wondering about the physical restrictions of ostomy compared with what I’m able to do now. How often does a bag have to be emptied, dangers of leakage, etc.

    Reply
    1. scottcsexton

      tom, i have had an Ostomy since 4-12-12….at this point i have found that with proper application of the paste and keeping the hair off of the area of the ostomy you will have very good luck. now to the next point…emptying the bag..how often is all up to your body…how long after you eat that this action happens depends on what part of your intestinal tract that they interrupt. just be aware…they are made of wax…the bag parts that seal…and with any wax with heat..they will break down.

      please don’t be afraid of it…it will become like it is not there. just remember what you eat now that gives you gas will still give you gas…

      lastly is the dreaded issue no one talks about….the smell. you will find you can literally clear the room if you have to pass gas. think of it this way…..more time in digestive tract, more time to filter. so you get my drift i hope..

      Reply
    2. Stephanie Hughes Post author

      Hi Tom, nice to meet you. While I’m definitely not a doctor, I don’t know that I’d give up on your colon quite yet. Just from my experience, it sounds like you may have a number of options before looking at an ostomy. Hopefully your new doc can help you figure some of those things out.
      However, if you do end up needing an ostomy, rest assured that you can still do all of the things that you like to do. I have done a triathlon and half-marathons in the past (actually I started doing them AFTER getting an ostomy.) I have other friends with ostomies who have skydived, climbed mountains, scuba dived, even one who does roller derby. After surgery, it does take a little time to build up to that, but my ostomy hasn’t kept me from doing any of the active things that I want to do.
      Also, emptying the bag is going to depend on your eating habits, but I would say about 6-8 times a day. The nice part is that you get to empty it on YOUR time and not just when you have to go. And leaks are something that will happen, but you learn how to deal with them. Once you figure things out, they are a fairly rare occurrence.
      It’s all just a matter of adjusting. Let me know if you have any other questions.

      Reply
  8. Linda Williams Stirling

    My hats off to you for telling your stories and providing a place to learn about this condition, and for others to share stories and ask questions. I don’t have Chron’s or an ostomy. I do have IBS, but my problems stay more often on the very firm end of things. I also have several other “invisible illnesses”, which is where I can really relate. In the end, we remain who we are. I’m still the same person who loves grade B movies, thriller novels, and watching butterflies. Unfortunately, many people’s response is either “But, you don’t look sick” and think I’m faking or lazy, or treating me like a porcelain doll. I am sick, but I won’t break. I’m just me, the same me (yes, with physical limitations, but the same mind, personality, and emotions), and that’s what I want them to remember. You have a great blog. Keep up the good work!

    Reply
    1. Stephanie Hughes Post author

      Linda, I’m glad you shared your own experience with an “invisible illness” because I know there are so many of us fighting for the same thing, even if we’re dealing with different symptoms. And you’re right, above all, I think we all want them to know we’re still the same “me”. 🙂

      Reply
  9. Ashley

    I am so glad i came across your blog. I think its been a breath of fresh air. I was born prematurely, and in return I had to have a colostomy. I am very blessed because I was able to have it reversed a few months later, not that it stopped ALL the problems . Not expected to live, I am now 24 years old. I grew up feeling embarrassed of myself because I was constantly having stomach issues, surgery and of course the two scars it left behind damaged my self esteem. I never wanted to talk about it. I’ve changed my life with food recently. I dont have as many issues as I used to have because of it. I really felt alone growing up, like no one could ever understand me and after reading your blog i realize how many people can understand me and relate. Im at a point in my life where Im proud of my scars, my illness and all ive been blessed to overcome. Thanks for being so proud of yourself and confident. I’m sure it has helped many and will continue to help many that are going through the same or similar. XOXO

    Ashley!

    Reply
    1. Stephanie Hughes Post author

      Ashley,

      You have such an amazing story. I know how hard it was to have to deal with my issues at the age of 13 and I can’t imagine having them since birth. And I know the feeling of being alone, especially as a kid. I never thought I would be proud of these scars and stoma and ostomy bag, but they really are very defining for me. And I’m glad to know there are others like you who feel the same way.

      Reply
  10. Harlan Rimmerman

    Here is something that might help…I normally wear a large size shirt. You can buy large-tall at most clothing stores and that size is great for wearing your shirt on the outside of your pants.

    Reply
  11. D Harmer

    My goodness you have articulated exactly how I feel. Having had ulcerated colitus for just over 25 years which then turned into bowl cancer. I had a permanent illostomy 2 years ago and I’ve never felt better, in fact it has made me realise how unwell I was before I had my op. I’m 73 and apart from the odd hiccup getting on well with Stevie Stoma.

    Reply
  12. Matthew Dobos

    I read tons of blogs every year, and this article still ranks in my top 5. I feel like Stephanie and I must know the same people, despite being on different coasts. Heard the same things- I’d rather die that have one, you’ll ever get married with one, blah blah blah. Even after 25 plus years of having an ostomy, it still bugs me to see people who stigmatize it. It takes quite a bit of, ahem, intestinal fortitude (couldn’t resist that line) to put yourself out there for the world to see and I do see it making a big difference- thanks again Stephanie!

    Reply
    1. Stephanie Hughes Post author

      Thank you so much, Matthew. That means a lot to me that you’d say that and I do hope that we can make a difference!

      Reply
  13. Dave Alexander

    Here in the UK, Poo has a taboo attached to it. We don’t talk about it. We don’t like others talking about it, and for something that is so natural, we treat it as worst of the worst. So you can imagine trying to talk to non ostomites about doing the daily routines through a hole near your belly. Answers of Eurgh, yuk, horrible are sometimes said, but most of time, even my parents have said this, the answer you receive is “I don’t really want to talk about it”
    Maybe I’m the odd one out and others have had better responses, but I love my colostomy, or “Justin” as he is called. And I am proud to be associated with all you other bag wearing guys.

    Reply

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