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Stephanie’s Story

In July I had emergency surgery to repair a perforated bowel due to Crohn’s Disease.

 

After 39 days and another procedure to allow a fistula to drain, I finally went home. But that wasn’t the end of my journey. Just a few weeks later, my fistula re-opened and I was in the hospital for another two weeks. At that point it was decided that I should have surgery for a temporary ileostomy.

 

At 22 years old, I never imagined I would be going through the medical trauma I have been through. I certainly never thought that I would end up with an ileostomy. I learned the hard way why it’s never a good idea to stop taking your medications or stop seeing your doctor. I often think about how things would have been different had I continued to take care of myself the way I should have, instead of letting things get to the point they had.

 

The weeks leading up to the surgery were difficult—physically, mentally, and emotionally. I was unable to eat solid foods and was relying on TPN as my means of getting nutrition. I was insecure about the way I looked. None of my clothes fit me anymore, and my hair had started falling out in clumps.

 

I was unable to shower because of my picc line, a JP drain, and the fistula pouch. On the outside I tried to put on a happy face, but around my closest friends I took the mask off and let them carry me through.

I was worried about what people would think about my ileostomy. It’s not every day that you meet someone who poops in a bag! But I found several Facebook support groups and IBD advocates on social media who started to change the way I thought about life with an ileostomy.

One of those campaigns I came across was Get Your Belly Out. I had seen it as a hashtag on Instagram and was inspired by the ostomates who were brave enough to bare their bellies to the world.  Even more encouraging was that many of them looked to be my age!  It was through this discovery that my mind was changed about whether or not to show off my pouch.

 

From then on, I made up my mind that I would be as transparent and blunt as possible when it came to sharing details about my life with an ostomy.  I even wrote a blog post about my first bag accident!  There’s already enough of a stigma surrounding IBD, and I want to help take that stigma away. Everybody poops—it just so happens that I poop in a bag!

 

My ileostomy (who I call “Frank”) has improved my life in so many ways. I can finally eat and be pain-free, and I can enjoy many different foods that I wasn’t able to before. I no longer have to start calculating how long it will take to get from one end of Target to the bathroom; I have a newfound sense of freedom because of Frank.

 

So why would I want to hide that part of me from the world? I’m proud to show off my pouch, and anyone who has a problem with it is probably not worth having in my life anyways.  Get Your Belly Out inspired me to do just that, and if I can inspire even one other ostomate to be proud of their pouch and show it off, then I’d say it’s worth it!

 

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