Whether misinformed or underinformed, I’m still angry…

I had (and still have) the  most amazingly wonderful WOCN in the world (don’t argue with me – I know most of us ostomates feel that way about our “special” nurse – but Paula IS the bomb!) Let me tell you why.

Back in 1991, some 20 years ago, when I had my first of 14 surgeries, Paula was THE NURSE that changed my life. Literally EVERYTHING I knew about ostomies was due to Paula educating me. There was no internet for me to Google ostomy and get freaked out by all the images that appeared, no online dicussion board to post my questions to, and no Facebook to “connect” with other ostomates. No one told me about the UOAA. My parents had never even HEARD of an ostomy, and certainly we’d never met someone who had one. So what I knew, I learned from Paula.

She helped me find the right type of pouching system. She showed me how to clean my skin, prepare the pouch, and complete all the steps to attach the pouch correctly to my abdomen. She told me what to look for as far as excoriated skin and a fungal infection. She showed me how to empty the pouch, how to fold it up and tuck it in my underwear to keep it secure. She told me it was perfectly fine to get the pouch wet – in a shower, bath, swimming pool, hot tub, ocean or lake. She told me I could wear anything I wanted, eventually have a normal diet, and live a perfectly normal life.

I never knew the extent to which I was blessed to have her until I started volunteering in the ostomy community. Not everyone even gets a WOCN, let alone a spectacular one like Paula. Not everyone comes home from the hospital and finds their first box of ostomy supplies waiting for them on their front porch. Not everyone gets told that getting the pouch wet is ok,  and that wearing it sideways is probably going to breakdown the wafer and cause skin irritation. Not everyone knows they can wear regular clothing, go out to eat and lo and behold, still have sex.

Whether others were misinformed or underinformed, I don’t know. All I know is that through all the work I did with UOAA, and with my job at Ostomy Secrets now, EVERYDAY I hear from someone who doesn’t have the basic information needed to live with an ostomy. Even with the wealth of information and support available online, even with 300+ support groups nation-wide, even with 3 major ostomy supply manufacturers that  all offer patient education materials,  and even with hundreds of professionally-trained, certified Wound Ostomy & Continence nurses working in our hospitals and clinics, people are STILL not getting basic information that is critical to a good quality of life with an ostomy.

And it makes me angry.

 

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One response to “Whether misinformed or underinformed, I’m still angry…

  1. Not everyone is as fortunate as you. You are one of the lucky ones. And rare. People still don’t want to talk about it, read about, or admit that this could or actually did happen to them. Nurses that teach us how to deal and care for our ostomy are special and in some places not easy to come by. I still have trouble getting my health care facility/insurance to let me see one. It has been 11 years since I saw one. She was so much help. I don’t know what it is that is such a problem with this, but I wish it wasn’t. I will fight on until I get what I deserve. Trouble is I get tired of fighting. It’s a fight I have to go through alone. Maybe that’s part of the problem.

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