My ostomy testimony

6 years.

stephanie hughes stolen colon ostomy anniversary inflammatory bowel disease crohn's ulcerative colitis ileostomy ibdThat’s how long it has been since I have been living with an ostomy. That’s close to 20% of my life. Now after spending more than half a decade without a colon, where does that leave me? How do I feel about the new life I have? My outlook last year was fairly grim, after I had just spent a week in the hospital due to an intestinal blockage during my pregnancy. But things are different this year.

Even though I have dealt with a few issues since my surgery in 2012—inflammation in my eyes, having the rectal stump removed due to lingering inflammation, intestinal blockages during both of my pregnancies—I have not had any true recurrence of IBD since my surgery and have not taken any IBD medications since that time. Do I love my ostomy? Nope. My goal here is not to shout out, “Having an ostomy is the best thing ever!” Because it’s not. But last week I had an ileoscopy (think colonoscopy without the colon), and afterwards I received the best news that anyone with IBD can get—no signs of disease activity! And that, my friends, is what makes me want to shout from the rooftops.stolen colon inflammatory bowel disease crohn's

It has not always been an easy road with my ostomy and I still have a love-hate relationship as I continue to grapple with feeling self-conscious or concerned about leaks or worried how others will react to it, but ultimately those pale in comparison to the memory of needing to use a walker to get myself to the bathroom many, many times during the day and spending more nights than I want to count in a hospital bed. I still don’t recommend surgery as a first choice in treatment, since I think most people need time and the opportunity to explore other options before committing to this one. I know I did.

stolen colon sedimentation rate graph ostomy inflammatory bowel disease crohnsBut when my lab results look like this (Sedimentation rate is a marker of active disease. That crazy outlier is from one month before my surgery.) and can keep me off meds and out of the hospital (at least for the most part), I’m going to say that it was the right decision for me. That’s how I have been able to embrace this new life, even with all of difficult parts that come with it. And looking back now, 6 years later, I do not regret it for a second.

A QUICK NOTE ABOUT HAVING AN ILEOSCOPY: This is my second scope since my surgery in 2012. I had one in 2014 and now in 2018. I also had an upper endoscopy performed this time. I have had these done as a preventative measure. We know that if symptoms start to arise, the faster we can start treatment the better your odds of getting back to remission. And often, signs will be seen in blood work or through a scope before they manifest into physical symptoms. So I decided to try my best to stay on top of things and not give any inflammation or disease recurrence the chance to sneak up on me. My GI and I have a plan for annual appointments and blood work and doing a scope every 3-5 years. Thankfully an ileoscopy is a simpler process than a colonoscopy since the prep is not required!





8 thoughts on “My ostomy testimony

  1. Molly

    Stephanie I am so glad you had no sign of disease! That is wonderful! You are truly an inspiration to those in your world going through the same thing. I am sure they treasure your posts.

  2. T

    You are an amazing young woman and an inspiration to me. At 49 I was diagnosed with rectal cancer. I got a permanent colostomy in October 2017. I had to have it so they could properly and aggressively treat the cancer. This last week I was diagnosed as cancer free and just have to have a few chemotherapy treatments as insurance.

    The ostomy will be with me forever. And I hate it. And I wonder if I will ever find love again because of it. You see I got divorced two years before I was diagnosed with cancer.. But watching your journey gives me hope.

    thank you for putting your life out there. Thank you for inspiring me to push on .

    1. Stephanie Hughes Post author

      Thank you for your kind words. And what wonderful news about being cancer free! But I’m so sorry you’re struggling with the ostomy. It’s such a big change. But I hope you’re able to find a better acceptance of it. If there’s ever anything I can do or if you’d like to chat, feel free to email me.

  3. Deborah Mckenzie

    Me too. The reason I asked is…I’ve had my ileostomy 3 years and feel great. But I’m still on remicaid infusions every 8 weeks.


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