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Living With a Colostomy Bag

After a recent flare up with ulcerative colitis, borderline Crohn's, there is talk about the possibility of needing a colostomy bag. I am only 20 and quite adventurous and am worried about the limitations this may put on me. If anyone has any advice on living with a bag or it's possible limitations it would be extremely helpful.

  1. Hi MAndrews. While I do not have an ostomy, I can say with some authority that I have many friends who had their quality of life restored. They are able to be present with their family, travel, eat, and enjoy life again.

    Having a great ostomy nurse is crucial to helping you figure out what is best for your skin.

    If you look up Vegan Ostomy, Lets Talk IBD, Crohnie Bologna, and The Stolen Colon, they have excellent content about life and having an ostomy. I know I'm forgetting so many, this was just off the top of my head. Hopefully some others will chime in!

    1. Hi @NAndrews,

      I have had my ostomy since 2013 and I can honestly say that while it is not without it's challenges, I do not regret it one bit! I struggled with severe Crohn's for 5 years before I finally pulled the trigger and had the surgery done. I noticed an immediate improvement in symptoms, and felt more like my pre-diagnosis self than I had since I started having symptoms.

      Before I got my ostomy I wasn't really able to go out much and I never had any energy. My food options were so incredibly limited and I was miserable. It can be scary to make the choice to have a life altering surgery, but I have found that it truly gave me my life back! I have been able to do so much more with it! I remember the first time I went to a concert post-surgery and realizing that I was able to actually enjoy the whole thing from my seat instead of from a yucky venue toilet! I felt like the power was back in my hands because I get to CHOOSE when to empty it, not my Crohn's making me run to the toilet every 15 minutes.

      I agree with Jamie that having an ostomy nurse to help is huge, and you can also reach out to ostomy supply companies for samples, tips, and support. I have had my ostomy for a little over 5 years now and I am still so happy I made that choice!

      I would love to hear how you are doing and what you and the doctors decide to do! Best wishes!

      Natali (Team Member)

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