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Why I Mentor Fellow Ostomy Patients

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When I had my ostomy surgery back in 1986, the local support chapter of the United Ostomy Association helped me tremendously by answering my questions and being there for me the night before my surgery and when I was home recovering. I later became a member and then president for several years until I had to step down due to a stroke. My best friend took over for me and did an amazing job promoting the organization as well as counseling new members.

After 30 years, we merged with another group in the next county. We were only getting a new patient once in a while as well as the same members. It didn’t make sense for my best friend or myself to drive over an hour both ways just for eight people anymore.  While it was bittersweet that the GBOA wouldn’t be in existence anymore, we ended the last meeting on a high note. We did what we set out to do, which was showing others there is life after an ostomy.

I got to thinking the other day that it’s been a year or so since I’ve gotten any phone calls from ostomy patients who had questions or concerns about their appliance. I notified the two surgeons who supported the GBOA that even though the group disbanded, I was still going to be an ostomy consultant for them as well as Linda. When I had my last appointment with the surgeon’s RNNP, I asked him why Dr. A. wasn’t referring patients to me anymore. He responded that most Crohn’s and UC patients are taking biologics to get their symptoms under control. For the most part it seems to be working for them. I reminded him that I was still available to be there for his patients as well as Dr. A’s. He reassured me that I would be contacted if someone needed an ileostomy and wanted to speak to someone who had one.

A few days ago I received a phone call from a young lady who informed me that she was Dr. A’s patient. He highly recommended me as someone who’d be able to answer her questions before making a final decision to have surgery. We talked for a while and I reassured her that I was going to stand by her while she was on this journey. I wasn’t going anywhere  and she and her family members could contact me anytime if questions or concerns came up. It wouldn’t bother me because I understand what it’s like to walk in her shoes.  Volunteers were there for me when I needed assistance so I wanted to do the same.

Before hanging up, I told her that I’d be sending some information in the mail about living with an ostomy, helpful hints and whatnot. A week later, I decided to send her some Hollister samples to try once she received her stoma as well as some Bath and Body Works body wash, body cream, clarifying shampoo to get rid of the build up in her hair post op, antibacterial soap and body wipes to clean and moisturize the skin. I figured that would be a valuable asset to her while she’s an inpatient and still sore once discharged to go home.  She could get herself clean until the staples/stitches were removed.

This is my true calling and I wouldn’t want it any other way. I’ve been there to offer peace of mind due to a “big” issue with an appliance when it was really an easy fix, or I’d tell a patient they just needed to call their wound care RN to set up an appointment to have their irritated skin checked.

I never ask for anything in return. Just knowing I’ve made a difference in someone’s life makes me smile. It reminds me of one of my favorite sayings by Dr. Seuss — “To the world, you may be one person, but to one person you may be the world.”

Getty image by Lorenzo Antonucci.

Originally published: September 15, 2019
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