Excuse me, is my ostomy bag showing?

I have lived with illness for more than half of my life. I was diagnosed 14 years ago, but I was dealing with symptoms even before then. Even though I’m not dealing with active symptoms right now, I still have Crohn’s disease. Having an ostomy has put me in remission for the first time in a decade, but it’s not a cure.

This week is known as “Invisible Illness Week” and it’s a time that we can bring those illnesses and issues that often hide in the shadows out into the light. Throughout the past 14 years, my disease mostly stayed inside. There were the few times when I would lose a drastic amount of weight and it would be obvious in that way, but usually I dealt with it on my own and without others knowing what was going on outside of me telling them I didn’t feel well or whatever I might’ve said.

Now, I wear a visual representation of my disease on my stomach. And I am not in any way advocating that you should think of an ostomy as a “disease” because, in reality, it was what saved me from mine. However, in this context, it is symbolic of my disease. It has been a different experience having what I dealt with transform from being (for the most part) entirely inside to being visible from the outside.

When I was younger and would go to the hospital for my remicade infusions, I was in the same wing as many patients living with cancer and getting their chemo treatment. I remember even at that time thinking to myself that I was thankful that I didn’t have to wear my disease around for all of the world to see. I didn’t want people tiptoeing around me because they could see how sick and frail I was. I figured it was better that I could keep it inside.

But over the years, I have found how difficult it is to carry a disease inside of you. It’s easy to want to just bottle things up and not let on how bad you are feeling, but that gets to be a heavy weight to bear all by yourself. And it does become very lonely. People forget that you’re dealing with constant symptoms. They wonder why you no longer want to hang out until 2:00 in the morning or why you sometimes sit by yourself at parties. They don’t see the war that’s raging inside your body.

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Now I have an ileostomy and it’s not hiding inside. Granted it is still fairly easy to hide under clothing and most people who I come into contact with on a daily basis don’t even realize that it’s there. But I see it there every day. It is a constant reminder of what I have dealt with over the better half of my life. Not a day goes by that I don’t have to look at it, touch it, feel it. But I realize that’s not really any different from how it has always been.

I know for me, and I think for many others living with inflammatory bowel disease or some other “invisible disease,” we see it every day. Maybe it’s not something that we can readily point out to others, but every time we look into the mirror we see it: the look in our eyes that’s a testament to what we’ve been through and what we’ve overcome. We see the battles fought, won and lost. We see the days that have been taken from us and we our thankful for the ones that have not.

We see the person we are outside of our disease and, at least in my case, I’m not quite sure who she is. Having this disease is so engrained into my life that I don’t know who I am without it. I do not believe that having Crohn’s disease defines me, but it has shaped so much of who I am that I could never say that I wish I had never been diagnosed because I honestly don’t know where I would be today without it. But I can’t imagine that I would be as strong as I am now.

Even if an individual’s disease is not evident to the world, they see it, they touch it, they feel it… every day. So today, remember that you never know what’s going on in a person’s life behind closed doors. Just because they don’t look sick or don’t seem like they are going through a difficult time, they may be dealing with more than you can know. Remember the people who have to fight every day just to make it to the next.

22 thoughts on “Excuse me, is my ostomy bag showing?

  1. Kristi

    Very well stated. I read your posts often and feel its a look into my own life. Thank you for having the courage and strength to share. I often have the same thoughts and or emotions!

    Reply
  2. MikeW

    Just a moment. Sorry, I can’t write the positive review of your post and blog I’d intended to.

    I fed your content and bravery into my Awesomenator and the machine started cooking itself with overloading awesomeness. Now it’s totally disintegrated.

    Reply
    1. Stephanie Hughes Post author

      Thank you, Mary. It really is amazing to see how prevalent these diseases have become in recent years. I hope that just pushes researchers to find a cure sooner!

      Reply
  3. MatthewD

    Always love your work Stephanie! This one one too, but it’s the first one I actually found something to disagree with. Specifically, I never refer to my ostomy as “my disease”, because it’s a lifesaver. So many people suffer because they are so afraid to have an ostomy even though it would greatly improve their lives. I was in my early 20s and had mine after multiple j-pouch failures and even then I didn’t “want” it. But it gave me my life back. I could never say anything negative about my ostomy, even though it’s a constant reminder of pain and suffering. I’m asymptomatic now which never could have happened before.

    Reply
    1. Stephanie Hughes Post author

      Even if you’re disagree with me, Matthew, I’m agreeing with you 🙂 I never actually refer to my ostomy as a “disease” or really any other negative term. As it is with you, it has been a life changer for me and I don’t regret it for a moment. Using that terminology was merely a reflection on invisible illness week and the fact that things are no longer invisible and I have a visual representation now. But I get your meaning, so I actually changed that up a little.

      Reply
  4. Marisa Lauren

    This is such a beautiful post Stephanie! Made me tear a little bit actually since I could have written so much of it. Having an ostomy is a constant remnder of what you/we have been through and I’m finding it really difficult right now to figure out who I am away from this IBD world. It’s tough when it’s taken over so much of your life. You don’t want it to define you, and I tried so long to make sure it didn’t but after going through so much it does become engrained in you. It’s hard to separate. And i love the quote “you dont know what goes on behind closed doors” too. Thank you for writing 🙂

    Reply
    1. Stephanie Hughes Post author

      I appreciate that so much, Marisa. I know you, of all people, get it. I think we always deal with this pull between being defined by this disease and wanting to be more than just your disease, and I think that’s OK. It’s hard sometimes to reconcile the two, but I think that’s what keeps us striving for more, even though we know how changed we are from having to live through it.

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  5. Molly

    What a strong post! As someone with another invisible illness who is still trying to figure out how “visible” to make it, I especially appreciated the sentiment of not knowing who you’d be without having gotten sick.

    I recently went on a first (OkCupid) date, and the guy suggested a bakery, which I went along with since we’d just said we were having coffee anyway. When we got there, though, he made some comment about hoping that I would find something I liked, so I responded that I couldn’t eat anything there, and when he asked, explained why (celiac disease). He thought it was weird that this was one of the first things I said, and suggested I could have just said I wasn’t hungry or just wanted to keep it at coffee. But, to me, that would’ve been a pretty big omission! I told him that for better or for worse, it’s now one of the most important things to know about me, and we moved on from there. (Not that the date ever got much better…interesting guy but we had NOTHING in common.) I actually mentioned it in my profile, too, because the truth is it’s just important information, whether or not I want it to be. The way I see it, my illness may not be visible, but that doesn’t mean I have to keep it secret.

    Reply
    1. Stephanie Hughes Post author

      That’s a really interesting experience, Molly. I know when I was younger, before I started blogging, I never really brought up Crohn’s disease, but I never avoided it either. If someone asked, I would tell them. I think I’d much rather start off being honest, even it is a heavy subject for a first date, than to start off avoiding the subject. Especially when it’s such a big part of who you are.

      Reply
  6. cirquemom

    My doctor’s office sends out a daily email digest of interesting articles and today your blog was included. I thought it was wonderful. I’ve suffered from a motility disorder my entire life and just finally got a diagnosis after years of misdiagnosis, unnecessary surgeries, being told it was an emotional problem and/or stress, and so forth. Like you, I always felt that if I just hid my suffering and no one knew about it, it was almost as if it didn’t exist. Well- it DOES exist. I do hide it. I don’t go out when I feel bad, so people don’t see it. The hardest thing for me when I do confide in a friend- and they don’t “get it”, think I’m being dramatic or a hypochondriac. After all, I don’t LOOK sick. This recently happened with a friend who also happens to be an RN. She was actually quite judgmental about it. When I explained I was worried about an upcoming trip, since I have ended up either violently ill in strange hotel rooms or having to find an ER in a strange city so many times in the past, I have a bit of PTSD about traveling. She said “So, don’t go.” When I said that I couldn’t just stay home the rest of my life and never go anywhere, she said, “Why not?”
    My digestive system is paralyzed. If I were in a wheelchair because my legs were paralyzed and voiced concerns over the difficulty of traveling- would she have said, “So- just stay home for the rest of your life?”
    It was heartbreaking. I had opened myself up to her and shared something I don’t normally tell people about, and she just didn’t get it.
    It gets tiring.

    Reply
  7. Stephanie Hughes Post author

    Your words really rang true with me. So many people think there is an easy fix to things or that we are being overly dramatic, but they just can’t understand. I hate that you had such a negative experience with someone in a medical position, of all things! But know there are many of us out here who do get it. Even if we’re not dealing with the same symptoms, we know what it’s like to carry to burden of a disease that overs can’t see or don’t get.

    Reply
  8. louiseg86

    Stephanie thank you for this! Brought a tear to my eye as I struggle to look at my visual reminder, but I’m reminded I’m not alone & this has indeed given me back some of the days UC would have stolen from me x

    Reply
  9. HelenB

    I just love this post Stephanie, it’s like you were inside my head! I read your posts all the time but this is the first time I have felt the need to comment. Your experiences/ thoughts/ emotions all seem to mirror my own! Please keep writing, you have a way with words that is just so inspirational and I really appreciate your blog!

    Reply
  10. lacey conners

    Where did you get the shirt you’re wearing? That is awesome and I love your story as well. Thank you for sharing.

    Reply
  11. Debbie Benefiel

    Thank you so much for sharing this..I’ve got a history of ischemic colitis..numerous times..numerous colonoscopies..on Monday the 8 th of February i will be having left side cholectomy with ileostomy..I’m a little scared..nervous ..overwhelmed but know in the long run I wlll get used to it all and feel so much better..my surgeon is gonna try it laproscopic but might not be able to..and hopefully the ostomy can be reversed in a couple months when i heal..thank you for making me feel better about this..

    Reply
  12. Mike W

    Your post really reflects some of my own feelings, having suffered for most of my life with UC, and now facing a J-pouch reversal to ostomy surgery. Thanks for giving me hope for a better life in the near future!

    Reply

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