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September 9, 2016

Living Life Fully with Your Ostomy, Part 2: Supportive People

“This one leaked again last night too.  Am I going to have to sleep with a plastic sheet for the rest of my life?!?”

I sat on a chair across from my Enterostomal Therapy Nurse (called “ET nurse” from here on), slumped forward as I relayed the details of another night-time ostomy bag failure.  I was feeling frustrated and dejected.  

It had been several weeks since my ileostomy procedure, and I was honestly wondering if and when things would get better, and if I’d be able to return to the active lifestyle I had enjoyed before all this.  

My ET nurse listened patiently and suggested some different products and techniques to try.  In the weeks to come, she would prove to be one of the most valuable support people in my post-ileostomy life.  My visits with her would be revolutionary for me in many ways, but three things really stand out:

1. Getting the right Ostomy Supplies for my Body Type

She helped me to minimize leaks by hooking me up with ostomy supplies that are right for my body.  In our initial consultations, I was able to try a wide variety of models and supplies until I found the right kind.  More specifically, she identified that I have a smaller abdomen than most, and recommended that I try a pediatric-sized flange to connect my bag to my body.  This made a huge difference for me in terms of fit, dependability and ultimately, my own confidence.  

2. Creating Comfort Level

She understood my fears and struggles perfectly.  With years of experience in dealing with ostomy patients, she has heard and seen it all.  She always asked the right follow-up questions to help me solve various problems related to my ostomy and ostomy supplies.  She never looked at me blankly or made me feel awkward when I shared the “dirty details” related to my ostomy equipment.  

3. Confidence Building

She inspired hope for my future.  I’ll always remember the visit when I asked her if I’d ever be able to do multi-day hikes and mountaineering, activities that I had enjoyed prior to my surgery.  She told me about a guy named Rob Hill, a fellow “ostomate” who had climbed the Seven Summits – the highest mountain on each of the 7 continents – in order to raise awareness for people living with intestinal diseases.  I left there knowing that if Rob Hill could climb Mount Everest with an ostomy pouch, surely I could find ways to help me regain the active lifestyle that I had longed for since my ileostomy.     

Looking back on my “life with an ostomy”, I would definitely say that meeting with an ET nurse was a game-changer.  Her specialized knowledge, her empathetic attitude, and her access to lots of different trial supplies helped put me on track towards having the kind of active lifestyle that I longed for.  If you haven’t done so already, do yourself a favor, and get in touch with a qualified ET nurse as soon as you can!  

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