My 2 year Stomaversary!

What I have learned in the past 24 months of living with an ostomy

It is amazing to me to think that on this very day, just two short years ago, I was at UNC hospital, saying ‘goodbye’ to my colon. (I actually wrote an obituary for my colon that day!) At that point, I was scared, but I was ready. I was ready to start feeling better. I was ready to be able to walk again without being in an enormous amount of pain. I was ready for my life to start again.

For several months, I felt like everything had just stopped. I had quit my job because I was feeling so bad. I had a hard time going out with friends, even for a short time. And I was trying every last-ditch effort I could think of to save my colon, like changing my diet and ultimately going cold turkey off of all meds. (Side Note: Not a good idea.) But obviously, none of it worked.

I think back to those times and wonder… Why did I fight it so hard? What if I had gotten the surgery soon? How would that have changed those years of suffering and exhaustion? But I realize that I should never think like this. It doesn’t matter “What if.” All that matters is what happened and where I am now. I also don’t think that I would as fully appreciate the new life my ostomy has given me if I hadn’t been through all of those things. I may not be as comfortable as I am with my ostomy if I didn’t have the memories of the difficult journey I have been through.

That’s the reason that I would never tell anybody, “You should get your colon removed and get an ostomy… It’s great… I’ve never felt better… I wonder why I didn’t do it sooner.” If you are blessed, as I was, with the ability to make a decision about having the surgery, rather than being taken into emergency surgery, then it should be taken seriously. The decision to let go of your colon and accept the idea of an ostomy bag, especially a permanent one, is a HUGE decision. It will change your life. It will affect the way you feel about yourself. It is a decision that the patient needs to make and on they need to be able to live with. So I would never push somebody in the direction of having surgery.

What I am here to say is, “It’s going to be OK.” Whether you have run out of options or you have just accepted the fact that you will do whatever it takes to feel better, this decision is not going to ruin your life. It does not have to be so scary. It does not have to be so devastating. Just as each person living with Crohn’s disease or ulcerative colitis have found a way to make it through each day and have adapted to the changes it has brought to their life, you also learn to live with an ostomy.

And after 730 days of living with an ostomy, that is exactly what I have found: It’s all OK.

This picture is probably the last one ever taken of my stomach pre-ostomy, next to one of me from today.

stomaversary 2 year anniversary stoma colon ostomy ileostomy blue dot stomach stephanie hughes stolen colon crohn's disease ulcerative colitis inflammatory bowel disease ibd blog ostomy

Yes, sometimes I wish I still looked like the one on the left, Yes, sometimes I miss having a colon. Yes, I still get upset at times when I look at my stoma. Yes, I sometimes try to remember what it’s like to be “normal” (even though I can’t really do so). And YES, it has all been worth it.

I am now living with a lot less stress and worry and pain than I used to. I wouldn’t go back to the life I had before for anything. My ostomy has changed me. And while I may not like every single thing that has changed along with it, it has given me back some of the hope I had lost in living a beautiful life.

13 thoughts on “My 2 year Stomaversary!

  1. Peter Evans

    Happy anniversary. Well written. Mine is practically the same story. I thought I could beat my UC. Eventually when they took out my colon I was told if I had waited another 24-48 hrs I would have died of sepsis. When they went in to get the colon it just disintegrated and turned to mush in their hands. I was soooo lucky.

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  2. kristin

    congrats on the stomaversary! Mine is only 4 months old and is reversible after I finish chemo. But it hasn’t been as bad as I thought. (gasp! that was a real surprise.)

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  3. veganostomy

    Happy Stomaversary! Your ostomy certainly hasn’t stopped you from doing what you want. Looking at your before and after photo, I’d say you look way more fit now.

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  4. Kara

    I just got my stoma on April 22. So I am only a couple weeks out from an APR with permanent colostomy. I have no idea what I am doing still. But I know with time I will learn all the names of the different products and which ones are the best ones to use. Everything is a bit confusing and overwhelming, but I didn’t have a choice anymore. The life I was leading was very difficult. I was still running all the time and competing (I did a marathon the weekend before my surgery). But, the incontinence (a complication from both Crohns and radiation treatment from Colo Rectal Cancer) was so incredible awful I was having to make a lot of adjustments in my life so that there was always a bathroom nearby so I could run to it as fast as possible. Plus, my rectum was full of polyps and pre-cancerous tissue again. There was no choice. In a strange way, I feel more normal now. Going to the bathroom 10+ times per day and having accidents is NOT normal. But that was what my life was. Congrats on your 2 year anniversary. It is encouraging to hear from others who are active and have stomas. Thanks for sharing your story. Kara

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  5. Lewis

    Very well said Stephanie! It’s great to hear that things have gone so well for you. I’m less than a month from my 2-year mark as well and also doing amazing. I like how you talked about reframing your experience. I too often hear people struggling with IBD and am reminded of all I went through before surgery and how much better things have been since then. Do you sometimes forget you even have an ostomy? Sounds strange, but things have been so smooth that changing and emptying have just become normal day-to-day routines. Given that, it’s sometimes hard to stay in the loop with the ostomy world since it becomes less of my identity the more time passes. I’d love to talk more with you sometime about how you’re staying involved and how you balance returning to a “normal” life with continuing to support others with your blog.

    Kara – you’ll get there too soon enough! I was riding my bike within the first 2 weeks and started getting back into running around 4 weeks. It took a while for the occasional sharp pains from the incision to get better, but just listen to your body and take things slow. I actually qualified and ran in snowshoe nationals within 6 months of surgery! Hope your recovery goes as well as mine did 😉

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  6. Lisa T.

    Beautifully said!!! Congratulations! and I love your attitude. Its been 5 years tomorrow for me and it too has changed my life… for the better. It’s actually given me a life – who knew?! Yes I would love to look the way I did, but definitely not the way I felt. Good luck to you in all that you do in the future ~ hugs!

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  7. Bobbie

    I have had my stoma 10 years and feel exactly the same as you, changed my life for the better but I wouldn’t have known that if I hadn’t have suffered how I did. Well done.

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  8. Helen Lloyd

    Well done ! Life with a bag is infinitely better than severe UC , Crohns…or any other horrendous illness. I have had mine for 24 years now…never looked back. I’m a big swimmer , teacher, mum…..oh…and wife……I wouldn’t be without my ileostomy…it saved my life and gave me a new one!

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  9. Brittany MacInnis

    Stephanie,
    You are so encouraging and honest. Sharing your struggles and truth allow so many to breathe through their own struggles. What is amazing about your writing is that it’s relatable!! Ostomy or no ostomy, your story has an impact on all life struggles. Can’t wait to be related to you 😉
    Love,
    Brittany

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  10. Ryan & Carly @ reachingforfringe.blogspot.com

    Happiest Stomaversary lady!!! Do you celebrate your stomaversary? Ryan and I always do a big event or spoil him on his (July 30). So far we’ve been to Cirque du Soleil and gotten him Lasik eye surgery 🙂 You are such an inspiration to us, Stephanie. Thank you for writing this post and setting an example of celebration and thankfulness for this amazing surgery.

    You rock!

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  11. Ashling

    Happy anniversary! You said everything, I think about my stoma. I got mine in October 2010, I was emergency case, but wouldn’t go back to before the operation for anything.

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  12. Briana

    This makes me sad. For us to be so young and have to endure the lives we lead…I’m two months out from my surgery and I’ve had infection after infection and am still waiting to “feel better,” like everyone says I will…I guess it will just take time. But it still sucks I can’t hold my daughter without being in pain or put her in her crib because it’s too low or sleep on my stomach. I too look at my stomach and cry everytime I change my bag. I hope to become optimistic like you, one day. I’m glad you’ve come to terms with your life and are doing well. Makes me feel not so alone.

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