This past Sunday I attended my first ostomy support group with the Metro Maryland Ostomy Association. The bar was set low going into it. In the past I have gone to other support groups and have been tremendously disappointed. I didn’t feel like they were run by volunteers who were suited to lead such a group and the time was spent letting everyone go around the circle and tell their sob story. I know this can be helpful to some people, but it is not what I needed. I found that there was nothing productive or informative about the sessions. But this past Sunday’s meeting was pleasantly surprising, and here is why:
1. I was the youngest person in the room by 30 to 40 years.
I was given a heads up by my ostomy nurse before going that many young ostomates are turned off and never return, because when they get there they realize they have walked into a room of their grandparents’ peers. I went into it knowing this would be the case and was happy to be greeted by very friendly people. I stood out like a sore thumb but people came up to me and introduced themselves. Many of the people there have had ostomies for much longer than me. I find this a plus and will continue to look to them for guidance and inspiration. I do have hope that if I continue to go I will catch new young ostomates and will convince them to keep coming back. My long-term goal would be to recruit enough young people to start our own group.
2. The session was professional and organized.
Beyond standing up and quickly introducing myself to the well-attended group of about 30 people, there was no sob fest. The meeting was kicked off by one of the board members (they have a board!) and they introduced the speaker for the day. This week they had a representative from a company that manufactures ostomy products in Germany. These products are brand new to the American market. We got to learn about their products, ask questions and sign up for free samples. My impression is that for every session they either have a professional speaker or they break out into small groups based on the type of ostomy you have, and you can talk with an ostomy nurse and ask each other questions.
3. They have a WOCN (Wound, Ostomy and Continence Nurse) there at your disposal.
I have only been able to see my ostomy nurse when I have follow-up appointments with my surgeon. These appointments are about to end (I only have one more…knock on wood) and I’m not sure I’ll be schlepping out to Baltimore to see her again. While she is very responsive to my questions over email and phone, I get more from face-to-face interactions. At every meeting this group has a certified ostomy nurse. I got in line to talk to her at the end of the speech and was able to ask her my questions. She is a retired nurse and has many years of experience. I found her to be very knowledgeable, approachable and helpful. Too bad she doesn’t do private consults in DC.
4. They have a sample table in the back filled with supplies.
I think my free sample radar noticed this table before anything else when I walked into the room. It was in the back and covered in all the various ostomy supplies you might need. Turns out it’s there for the taking! When I spoke to the nurse and asked her my questions she pointed out specific products on the table I should take home and try. Before I left I went to get a close-up examination of what was there. I took a couple adhesive remover wipes and skin prep wipes out of the boxes and put them in my purse along with an entire bottle of stomahesive powder. This elderly man came up to me and asked why I took so few. I told him I wanted to make sure other people got to take some home. He looked me straight in the eye and with a very serious tone said, “If you see something you like, take it!” He then proceeded to take the two boxes that were basically full and shove them into my hands. I walked out of there with about $90 worth of supplies my insurance doesn’t cover but I actually need. Thank you sir for looking out for me!
5. I was in a room with other ostomates.
I found it refreshing to walk into the room and know everyone had an ostomy like me. Being in their presence made everything feel normal for two hours.
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