Caring for Crohn's & UC

Guest Post: Living with an Ostomy

June 25, 2013 at 8:02 pm Rebecca K. 3 comments

I am about a month in to my new job and sadly, life hasn’t settled down enough for me to get back into the blogging swing of things. Therefore I bring you another AWESOME guest post to bridge the gap while I am unable to post.

As I wrote earlier this month, I got to meet Stephanie Hughes at the Virginia Wine Country Half Marathon where we were both participating and fundraising for Team Challenge, CCFA’s endurance training program. I read Stephanie’s blog, The Stolen Colon, and loved how positive she was (she’s also pretty funny- check out her Ode to a Rectum). So I was extremely excited to meet her and get to know her (and find out how similar we are).

Stephanie and I before the half marathon

Some quick background on Stephanie: she was diagnosed with Crohn’s disease in 1999 when she was 13. After battling with the disease for over a decade, Stephanie had most of her colon removed on May 7, 2012 and was given a permanent ostomy. And just two days after our half marathon, on June 3, Stephanie had the rest of her colon removed.

Below Stephanie talks about living life everyday with an ostomy.

Living with an ostomy.

I know, sounds awful, doesn’t it? The idea of walking around every day wearing a bag of poop on your belly is enough to make even the worst stomach issues seem bearable.

That was my way of thinking for a very long time. I was diagnosed when I was 13 years old and after I turned 18, I hardly had a time where I wasn’t dealing with symptoms. For me, that meant many trips to the bathroom (usually between eight to 15 a day), lots of diarrhea and often blood in the toilet and a very difficult time holding it in once it was coming, malnutrition and anemia, fatigue and just overall feeling down.

For most of this time, I was determined to do anything that I had to do outside of having surgery. And I tried everything: just about every medication available, strict diets, even acupuncture. I will save you from all of the gory details, but after 6 hospital stays and extreme joint pain to the point of having to move around with a walker, I finally realized that I was out of options and determined that I would do whatever it takes to feel better – even surgery.

Prior to having surgery, I thought that I was going to have to buy a whole new wardrobe of unflattering, baggy clothes. I thought that I would no longer feel confident about myself and that everyone would know what I was hiding under my shirt. Come to find out… I was wrong.

So what does a day with an ileostomy look like?

Stephanie & her ostomy bag

When I wake up in the morning the bag is usually pretty full. First stop is to empty it in the bathroom. I usually start my day off at the gym and my ostomy doesn’t cause me any issues there. The output basically shuts down when I’m working out, so I don’t have to worry about it filling up while I’m there.

Stephanie post-surgery #2

Once I get home, I take a shower the same way that I always have. I know some people wrap their bag in the shower, but I just leave it the way it is. When I’m getting ready I dry it off some with my hair dryer. I may put a little extra thought into what I’m wearing, but I don’t have a single article of clothing that I have thrown away since my surgery. I have a wrap that I wear sometimes to help keep the bag flat under my clothes and to give some support when I’m wearing dresses or skirts.

Rocking her ostomy “wrap”

The rest of the day goes the same as it does for anyone else. I probably empty the bag a couple of times at work, which can be a minor inconvenience, but nothing compared to what I was dealing with previously with active Crohn’s. On a daily basis, I would say that I empty it between 4-6 times. I only have to change it about once a week and that only takes a few minutes now. I do still have an occasional leak that I have to deal with or some pain caused by the acid in the output, but you adapt to these things and they really aren’t that big of a deal anymore.

In the end, having an ileostomy didn’t make me have to give up any of the things that I thought I would. I didn’t have the sacrifice my style, my privacy or my self-esteem. Instead, I now can live every day without the fear of what my Crohn’s might do; I’ve been able to compete in two half-marathons and a triathlon; I have more energy to do the things that I want to do and live the way that I want to live. So I guess I was right, having an ileostomy would change my life.

Thank you Stephanie for sharing your daily experiences with your ileostomy!

For more information about Stephanie, check out her blog or follow her on Facebook or Twitter.

Entry filed under: Advocates, General Disease, Treatment. Tags: Colitis, colon, crohn's, crohn's disease, Crohn's Sucks, ibd, ileostomy, inflammatory bowel disease, ostomy, Surgery, uc, ulcerative colitis.