I am so happy to report that I was involved in three Ostomy Support Groups in New Jersey this week, and it was fantastic! As many know, I am president of the Union County Group, which is out of Overlook Medical Center in Summit, and have been for the past 5 years. One year ago, I worked with the Ostomy nurses to start a Support Group at Robert Wood Johnson Somerset Campus, and three months ago, I worked with the Wound and Ostomy Center at Saint Barnabas Medical Center to begin my third group.

The news worth sharing is that we are growing and it is very exciting! Despite the fact that there are between 750,000 and one million ostomates in the United States, there are not nearly enough support groups and other services available to us. In fact, we are truly underserved, and in many cases, it is a terrible shame. 

The Support Groups offer us an opportunity to “meet our people” and share our stories. We can ask how to deal with skin irritation and be knowledgeable in preventing skin breakdown. Sitting with reps from manufacturers of our supplies gives us a chance to know what is new and in production for the future. We have physicians who get a glimpse into life as an Ostomate, something they really do not know. The surgeons are quite clear that they do the surgery, and then we learn the impact it has on our lives. Gastro-enterologists explain to us the pathology that most often creates the need for our pouch, as well as the urologists who deal with bladder issues.

In each of the three meetings, we have Wound and Ostomy Continence nurses there to answer questions, and to ask about our ability to cope with different situations. They learn from us as we learn from them. We have learned about hernia prevention and how to maintain our best level of health.

Nutritionists can offer lists of foods that can provide healthful nutrition and warn us about offensive foods that can cause blockages.

Most of all, our groups offer camaraderie, a beautiful connection. I wear a flower at each meeting, and although it began as a means of identifying myself for those with whom I had phone conversation, it has become a means of welcoming new and return members. I have received countless flowers over the 23 years that I struggled with my health, and 23 surgeries. These flowers are a visual of the beauty of our ostomies, and the new life we can enjoy!

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