How my ostomy and I became frenemies

We had an interesting discussion at my ostomy support group last week. We talked a little about the thoughts that we all dealt with when we first knew we’d have to have this surgery and about the grief that is felt over the loss of a part of yourself. We finished up by discussing what we actually went through and how we made the decision to keep going. It wasn’t a lecture on what’s the right way to handle all of this, but simply a discussion of what we’ve each found.

At the meeting, we also talked about acceptance of our ostomy and the question was asked, “Can you ever truly and fully accept it?” We discussed a little about how people have or haven’t accepted theirs, but all the while, it got me thinking. And I began to realize I’m not so sure that you can.

Please don’t get me wrong, if you’ve been following The Stolen Colon for any length of time you will know that I am so thankful for my ileostomy and what it has allowed me to do and the life I feel it has given back to me, but there are still times that I see it and it makes me sad/angry/frustrated/fill-in-the-blank-with-any-other-word-that-might-fit. And maybe that’s because I’m still pretty new to this whole thing and perhaps when I’m 85 and I’ve been living with it for nearly 60 years I’ll feel differently, but I doubt it. I think there will always be a small part of me that resents it, even just the tiniest bit, and even if all of the good outweighs it by a hundredfold, that resentment will probably still rear its ugly head every now and then.

stoma colon ostomy ileostomy ileoscopy hospital procedure IV stomach stephanie hughes stolen colon crohn's disease ulcerative colitis inflammatory bowel disease ibd blog ostomy best friends frenemiesSo I have decided that my goal is not to be 100% OK with my ostomy 100% of the time, since I honestly don’t think it’s possible. I think it’s more about an understanding that we have to come to. Sort of a deal between my ostomy and myself. We have agreed to coexist. I agreed to let my ostomy do what it needs to do and promise to take care of it when necessary, and my ostomy allows me to carry on with the rest of my life. Since I have given up so much, including a vital organ, I vowed to not let anything hold me back any more. I decided that I will do all of the things I could not do before, because that’s how I make living with an ostomy bag worth it. And that’s exactly why I have taken part in 3 half-marathons and a triathlon. That’s why I decided I could take on the extra stress of going back to school. That’s why I now talk about things online that I was uncomfortable with in the past.

Getting an ostomy is scary. It’s not fun and, let’s be totally honest here, nobody wants an ostomy. I sure as hell didn’t. But that doesn’t mean it can’t be one of the best things to ever happen to you. I can’t stand here and tell you that everything is great and ‘s wonderful and ‘s marvelous once you get an ostomy. But I can tell you that it doesn’t have to be scary. You can still do all of the fun, great, ‘s wonderful, ‘s marvelous things that you want to do (and perhaps weren’t able to do before your surgery). If I can have that, then I can accept living life with a bag. What I can’t accept is living a life of pain and worry about an accident and exhaustion and living my life in the bathroom.

Life threw me a lemon of a colon and now I’m doing my best to make lemonade out of this ostomy (…please ignore any strange visuals that came to mind with that sentence). So while I don’t think I will ever say that my ostomy is my best friend, I will say that I do not regret it coming into my life and it has changed that life for the better. There will likely always be a love-hate relationship between the two of us, but together, we live a pretty good life.

Do you feel you have accepted your ostomy? Do you think you will ever be able to fully do so? What in your life do you feel makes having an ostomy “worth it”?

14 thoughts on “How my ostomy and I became frenemies

  1. Steph

    Thanks so much for writing this, Stephanie. It really resonated with me, and I was just thinking about this a few days ago. I somehow expect to magically arrive one day at a place of acceptance, but I think that coexistence is a great way of looking at it. I appreciate what it does, but I would not have chosen it if I didn’t have to. Your post was so helpful!

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  2. Brandon

    I’ve had mine for a little over two months now, and I’ve asked myself that same question since I had the surgery. Because my Crohn’s wasn’t responding to medications anymore, there really was no choice for me not to have it. My colon was useless. My ileostomy is giving me a new lease on life, and I HAVE to be thankful for that. But at the same time, I’m still paranoid about it. It’s definitely a love-hate relationship like you described, Stephanie. No doubt about that.

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  3. Amanda

    Thank you for your honesty and for sharing some pretty personal feelings. This is just what I needed as I head into surgery #5, for ostomy #3, this week!

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  4. Mr. Stoma

    For me, most of the time it is acceptance. You kind of have to view it as a very permanent “roommate”…sometimes you get along, sometimes you don’t. Having mixed feelings is completely normal and it is odd sometimes since it sometimes seems to have a “mind of its own” and you don’t necessarily have much control over it. I think that is one of the biggest things to get used to (other than having to deal with the pouching system).

    For me, I was so horribly sick when I went into the hospital I remember telling my surgeon that I no longer wanted to go to the bathroom out my rear any more (which was good because my large intestine was completely shot and not having the surgery wasn’t an option). They left the choice to do a reconnect but I had decided not to do it – one because Crohn’s never fully “goes away” and two, I never, ever wanted to deal with the bathroom issues I had before my hospitalization.

    So, Mr. Stoma and I have a roommate agreement in place and we sometimes agree to disagree. 🙂

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  5. Leslie

    I have had my ileostomy for going on 15 years. I have an absolute hate/love relationship. Yes, I am and have been, much healthier since getting it, but oh what I wouldn’t give to have never had to have it in the first place!! I remember talking to my ostomy nurse, just days after my surgery, and her saying “in 5 years you will not know what to do without it.” LOL, Well, it has been the better part of 15 and I still imagine my life without it! So I can’t agree with her on that statement. I know she meant well but, it was not the case for me. Everything I do still has to be filtered through the inevitable Crohn’s patient question, “Is there a bathroom facility nearby?”

    That being said, I am thankful for the years of life it has given me. So, I agree it is a double edged sword for sure. Because without it I would most likely not be here to post this comment. So, Stephanie, I agree with you, while it will never be my best friend and a part of me will always resent it, I can and will continue to live a pretty good life with it!

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  6. mike

    I had my surgery on halloween 2013 ..since ive struggled to accept it ..at first i kinda felt like a monster ..not a normal man ..it definitely affected my life with my wife ..to this day i still wont take off my shirt in front of anyone ..but gradually you learn to live with it ..it gets easier as time goes by..my 2nd surgery is scheduled for march 5th i will be getting a j pouch ..the towards end of year ill have it hooked up ..just wanted to say i love your page here ..take care

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  7. Krissy

    I am 4 weeks post-op from rectal cancer and a permanent colostomy. I feel that I have accepted my ostomy but I am still a newbie. My quality of life prior to my ostomy was horrible and had to wear a diaper at age 37. Though I didn’t have a choice with my ostomy I know for sure that it has changed my life for the better.

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  8. Norma

    HI – I have an ileostomy for three years due to Crohn’s. I never for a moment ever thought I would be ok with with an ostomy, but with that being said, I’m so grateful for “Ivy”. I was so sick before my surgery I wasn’t able to do anything. Surgery and my ostomy has given me back my life. I can leave my house, go to work and be with family and friends. MY husband has been great about accepting “Ivy”, too. My daughter did a science paper on ostomies and did a psychological paper on people with life changing issues.

    The best compliment I ever received was from my supervisor at work. She said that she was happy that surgery was successful and that I didn’t need a “bag”. I was confused…and so was she. Then I told her that I indeed had a “bag”. She looked down at my gut and said, “I would have never known. You are always so cheerful, professional and you don’t smell.” Yes, she actually told me that I didn’t’ smell! We laughed and I explained that ostomies have come a long way.

    During a long presentation (over 2 hours), I did have to excuse myself since Ivy decided to become super active. My supervisor felt the need to explain that I had a “medical condition” and I corrected her. I truly feel that Ivy is NOT a medical condition…she’s a way of life. I am open and honest with people. I show Ivy off to anyone who wants to see her. I accept that she’s part of my life and that I have a life because of her.

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  9. Lyss

    Bless you. Your blog has gotten me through so much after I had my colon removed a few weeks ago. You’re very real and honest, and I feel the same way about my ostomy as you do. Everyone tells me “oh you’ll get used to it, it’s not that bad,” but I’ll never be able to fully accept and be okay with having it. And now I know that it’s okay and normal to feel that way. Thank you for writing this, and thank you for this blog. I enjoy reading your posts!

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  10. Sheila

    I am alive because I lost my colon. It was ready to rupture and I was at death’s door, literally. It took a very long time to recover. I have accepted the bag, after all, I am alive.

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  11. Ronda Shoalmire MCGraw

    I actually have had two ileostomies. Mine was due to colon cancer and against medical advice…I had the first one reversed. It took 8 years of living hell before I told my surgeon I was ready for the next final ostomy.

    Having been through it once..I knew what to expect. So determined to win, I decided to face it with humor. “Opie” is my stoma. I refer to him, talk to him, rub his “little poo poo head” and I get angry when he blows his bag. We aren’t besties by any means. I no longer feel sexy or desirable. But my disease is and was the reason. Opie is just the icing on the cake. But I am alive and living each day.

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  12. Deborah

    I’m four and a half days from ileostomy surgery. I was given the option of trying yet another new Crohn’s medication and the thought of another 6 month trial threw me into a panic. I told the team of doctors that I just wanted it to be over, especially since I have also developed a liver condition called PSC.

    To be honest, my mind keeps telling me that I am choosing wrong… Despite the fact that the doctors tell me I’m the perfect candidate for the surgery.

    The thought that I am having the permanent procedure both relieves and terrifies me. I’m like a caged animal searching for the nearest escape route, all the time aware that if I chicken out, my life will still be a prison of pain, cramps, nausea, and chained to a toilet.

    My thoughts are everywhere and it’s quite suffocating.

    From as far back as I can recall, going poop has always disgusted me. Being OCD only made my Crohn’s diagnosis that much more humiliating and torturous.

    Given my anxiety about all things fecal, I dread the leaking which – through my extensive research- I have learned is common.

    I’m not sure what I want to express in this post, aside from confusion and anxiety and anticipation and a glimmer of hope.

    As I type this, I sit in my primary room, tiled and echoing, waiting for the urge to evacuate to abate…

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  13. Phlip Ham

    Nobody, and I mean NOBODY, would really want an ostomy. TBS, i’d be dead if I didn’t have mine. i’ve said that it was an ostomy bag or a body bag. Now, I must say that I would never trade it for the difficulties I had before my ostomy. For well over a year every trip to the throne room and there were 25 to 30 per day was pure agony. I was a virtual prisoner in my own home and if i ventured out, I usually ended up with a depends full and that was on a good day. So, what I am saying, on balance, having an ostomy is really a good thing. I am back to living a full life, including hard physical activity and eating what I want. My stoma and I are not best friends, but that’s ok. We get along fine and welcome any challenge life will deal me

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