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By Ed Pfueller, UOAA

Amazing things can happen when ostomy patient advocates and clinicians come together.

Dr. Neilanjan Nandi, MD an IBD specialist at Hahnemann University Hospital in Philadelphia, trained in cities across the country and has long observed that “physicians were not comfortable with stoma care and troubleshooting as we should be.” “I learned early on the importance of knowing as much as possible by working with my patients.”

He decided to organize the hospital’s first “Hands On Ostomy Workshop” to empower his medical students, residents, and gastroenterology fellows with formal education.

To help bridge this gap with patients Hahnemann Outpatient WOC nurse Josephine Catanarzo suggested connecting the program with leaders of the Philadelphia’s UOAA Affiliated Support Group.

Stanley Cooper and the Philadelphia Ostomy Association, that is celebrating 70 years of service, and have a long history of talking to nursing students. They viewed this as another opportunity to bridge the gap between patients and those who serve them.

“The surgical staff and fellows got to hear directly from our engaging and dynamic patient panel about their experiences medically and personally with a stoma. This was the MOST profound aspect of the entire workshop. You can learn the medical and surgical nuances in textbooks. BUT you cannot understand the psychosocial impact unless you hear it directly and eloquently from our patients. Thank you to United Ostomy Associations of America patient advocates Sheldon, Stanley and the wonderful Stacey for taking he time to enlighten us!” Dr. Nandi says.

“We absolutely loved attending this,” Stanley says.  “For the Philadelphia Ostomy Association and UOAA it made Hahnemann aware that locally we have been in the Philadelphia area since 1949.  That we have a visiting service and that all our visitors are trained at a visitor’s training class that was developed by UOAA.  We had a lot of discussion on how today’s short hospital stays affect visits and a lot of times we can meet patients at their homes or at a restaurant for visits and that all helps in the patient’s rehabilitation.”

“Stanley was absolutely and overwhelmingly supportive of this initiative and brought in valuable educational resources courtesy of the UOAA for our surgical house staff. He was also able to provide us educational brochures to distribute to our patients as well,” Dr. Nandi says.

If you, your support group, or hospital is interested in some of UOAA’s educational guides you can view them here on ostomy.org or request printed materials, such as our New Ostomy Patient Guide. Our various Ostomy Patient Bill of Rights including practices for nurses to support their patients also help to educate and bridge the divides between patients and caregivers.

In addition to WOC nurses Josephine Catanarzo and Judi DiPerri  Hahnemann’s Colorectal surgeon David Stein was also invited to be a part of the workshop. Dr. Stein discussed what is involved in stoma site mapping and planning. The nurses shared clinical pearls on troubleshooting and application of ostomies.

“This was  truly was an amazing program!” Dr. Nandi says. “We learned about their individual stories and experiences with an ostomy and how they have continued to be true patient advocates within our greater community.”

One of Dr. Nandi’s patients Stacey Cavanaugh also provided her unique patient experience to the group.

“At our next event we are taking a suggestion from Anastasia, or Stacey, as she is affectionately known, and planning to have our docs wear an ostomy appliance for a day filled with fluid and to write about their experience and share it with the group. I think it will be more than novel and truly insightful for our young, and old! learners to gather. I also hope to invite other fellowship programs to attend our next ostomy workshop too.”

It’s inspiring what a few committed medical professionals and ostomy patients can do when they come together. Consider reaching out and bridging the gap where you live or work.

 

You can hear Dr. Nandi speak at this summer’s UOAA National Conference or connect with him on social media @fitwitmd  

To get involved with your local support group click here or follow our advocacy initiatives for other ways to make an impact.

Our Ostomy Gives Us Power!

Ostomy Visitor talks clothing and embracing life

By Ellyn Mantell

As president of our Ostomy Support Group in Summit, New Jersey, I have met many future ostomates over the years since I have had mine, and we have met in various places, depending upon their health, etc. The one that stands out in my mind is a meeting at a shopping mall a few weeks prior to her ostomy, with Carol, a woman who wanted not only to see the stoma for herself but to understand how it would fit into her life. She loves clothes, as do I, and was frightened she would need not only to purchase a new wardrobe but to change her style of dress.

The best way to show my stoma to her was to go into a fitting room in a store. We brought in some clothes that were of interest to her, and I proceeded to try them on, demonstrating how my stoma (Lily, as I have named her) would fit neatly and snugly under the clothing. I was reminded that as soon as I had my ostomy four years ago, I gave away all of my belts and fitted pants. I was certain I would never wear them again, despite being told that wasn’t true. To the contrary, I saw pictures of great looking women with ostomies online in tight jeans with belted waists. It was just too hard to imagine myself wearing belts and jeans with a pouch, and since these women were not in front of me, I couldn’t ask them “how do they manipulate their appliance to be comfortable and secure?”

Knowing it would have been invaluable to me to actually see an abdomen in clothing, I wanted Carol to have the proper introduction to dealing with her wardrobe. We laughed as I told her of my quest to replace my jeans and belts over the years – since I have learned I can wear almost anything! In truth, my “go-to” outfit is most frequently leggings and tunics, dresses and full-legged pants with a tank, covered by cropped tops. I am what is known as “funky and fashion-forward dressing,” as I learned when I was the fashion trainer for Macy’s years ago, and happily, my style hasn’t had to change due to Lily, who requires a high-output pouch that is so long, and I am so short, that it rests on my thigh!

Wide-eyed, but a little more able to envision her own “Lily,” Carol and I left and grabbed some tea at the nearest Starbucks. We sat and talked about the changes she anticipated and feared, and then she asked me what I really, very truthfully, feel about being an ostomate? Without missing a beat, I very simply said POWERFUL! I told her that as I look around at the many people shopping, I know I have a secret, and that secret is that I am strong, a survivor, and I can help others. Knowing that gives me the most positive feeling, and I am grateful, and want to share it!

I have checked on and even visited Carol as she recovered from her surgeries – since there were a few. Sadly, there is no straight line for any of us, and depending upon the reason for the ostomy, recovery can have many twists and turns. My own led me to need to spend weeks in the hospital and then a rehab facility. But she is improving daily and gaining back her strength and determination. I know she will join our support group or another closer to her home. I also know that before too long, she, too, will be accomplishing her goal of like me, being trained to become an Ostomy Visitor…to meet with and help others learn how to cope with their ostomy, and how POWERFUL they truly are, as well!