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me+ Community member, Sarah Biggart, shares how she experienced feelings of Medical PTSD throughout the COVID-19 Pandemic with her ostomy. Sarah’s blog was written in November of 2020, but remains relevant as we continue to navigate through the Pandemic.

Last Thanksgiving, following a beautiful dinner and a house filled with family and friends, I had to take my Dad straight to the emergency room. After a decline in health, my dad passed in January. The last months of his life had been a slog through the fog; however, saying goodbye was peaceful and everything about his passing brought me peace. It was time. Just as I was emerging from this fog, a new storm was approaching. A virus, spreading globally and forcing bustling cities into lock down: COVID-19.

As a person with a complicated medical history, I was definitely paying attention, and started taking precautions very early to mitigate risk. As anyone who lives with a compromised immune system and chronic illness knows, when we get sick, it can have a way of snowballing.

I was always aware of Medical PTSD, and recognized it in myself. The trauma of long health battles, surgeries and hospitalizations made my fears of the virus very real. I felt more affected by that fear than ever. It can be triggering for me to even smell rubbing alcohol; so smelling the strong hand sanitizers creates a visceral reaction.

When I saw people receiving nasal swabs, it took me instantaneously to having NG Tubes inserted. I could feel it, and I averted my eyes. When I saw images of people laying intubated, I automatically could feel the sensation in my throat. I remember all of those sensations so vividly. They are a part of my trauma.

It’s honestly hard to lay down exactly what this past year has been like emotionally for me. On one hand I am filled with gratitude that I am able to stay safe at home. I work from home, my child participates in remote learning, and although my husband does still go outside the home to work, we have stayed safe and happy in our cozy home. We’ve tried to keep our family traditions and make new memories.

Unfortunately, this year has also been a very bleak reminder of how my health and quality of life hang in a very delicate balance. If I were to get the virus, I have major concerns about my ability to survive. Seeing my community’s complete disregard for the health and safety of those around them has also been disheartening.

I often think about my ostomy supplies. When it became hard to get essentials this Spring, the thought of not having access to the pouches and wafers that I need was especially daunting. What would my life be like if I was unable to pouch my stoma?

Doctors figured out how to create ostomies long before companies like ConvaTec were around to innovate. Hearing stories of ostomates before me who had life-saving ostomy surgery, but could not manage them in a sanitary way, weighs heavy. What would my life be like without my supplies? I think of the pioneering ostomates, using rags and mason jars, and other archaic methods. They were true survivors!

So here we are in November. Instead of a full Thanksgiving table, it will be just the three of us this year. While our country is facing an unprecedented public health crisis, my family will continue to stay safe, stay home and mask up. I wish nothing but peace, health and happiness for all of us.

The Pandemic Tree

Early on, to make things fun we pulled out our Christmas Tree, topped it with a roll of toilet paper and strung up some lights. We crafted ornaments and added them to commemorate milestones and events. It was silly and fun, and for us, all bets were off during quarantine. Our family mantra became healthy, happy and sane, we did what we could to get ourselves there. The Quarantree became a Halloween Tree, and now has transformed into a Fall tree. It continues to make our home feel cozy and festive and truly brings us joy.

 

 

 

 

 

 

 

 

Editor’s note: This article is from one of our digital sponsors, ConvaTec. Sponsor support along with donations from readers like you help to maintain our website and the free trusted resources of UOAA, a 501(c)(3) nonprofit organization.

By Ed Pfueller, UOAA Communications and Outreach Manager

In-person peer support has always been at the heart of UOAA. Though people worldwide now routinely connect online with others living with an ostomy, the in-person experience of UOAA’s over 300 Affiliated Support Groups continues to endure and grow year after year.

The arrival of COVID-19 is challenging groups to maintain continuity after often decades of holding a routine meeting schedule. Ostomates new and old continue to need support during this time and video conferencing technology is making this happen. Zoom meetings have emerged as the platform of choice as our world strives for human connection during this period of isolation.

The South Texas Ostomy Support Group has been ahead of the curve and before this current crisis was already live-streaming with Zoom meetings as an option to in-person attendance. “Now that we are not able to meet up, we are still using the same meeting ID (link) but now that’s our only form of meeting,” says group president Christine Miller.

Christine recognizes that some may struggle to adapt to the new technology. “I made sure it was in the newsletter so those who needed help could call me and I could walk them through how to use Zoom prior to the meeting started. I had several calls the day of. It was exciting that we had so many people participate (10 people logged on). It was much less than a normal meeting but it was still heart-warming that they were still participating. We even had a newbie come! It was fun having her because she mentioned some of her problems and I immediately texted our Coloplast rep who jumped on for 15 minutes and became a very last-minute speaker for us.”

The Morris County New Jersey Ostomy Association, which has been in existence for over 40 years, is another group adapting to the times. UOAA Treasurer and the ASG’s board member George Salamy says that, after a trial to test for bugs, he and newsletter editor and webmaster Walter Cummins sent a broadcast email telling everyone they wanted to do a Zoom call.

“On April 15th around 23 people signed on with no issues. It was a mixture of older members and a few younger members, some with spouses, and our group’s WOC nurse,” George reports. “The original purpose of the call was to see how everyone was doing and if they needed anything. Everyone seemed to be okay. We talked about if there were any issues in obtaining products. I indicated UOAA works with the manufacturers and determined there were no manufacturing issues.” George adds, “People talked about shopping, which grocery stores were stocked, and some sanitary things we should all be doing (closing the toilet seat before flushing to eliminate germs). All in all, it went well. One member, who now lives in Florida, signed on and contributed much to the call. We decided to do this in May and will continue if needed. It’s a great way of keeping the members engaged.” After the meeting, members commented and made suggestions about future topics such as; the depression aspects of this “lock-down,” yoga, sound therapy for relaxing, and suggestions on where to shop and which stores had supplies.

Bob Baumel of the Ostomy Association of North Central Oklahoma sees potential in the virtual meetings because the organization’s meetings rotate between locations. “It will be interesting to see how Zoom works for our group. We may actually get better attendance using Zoom than we’ve been getting with physical meetings, considering that members who don’t feel well enough to travel to meetings, or who live far from our meeting locations of Stillwater and Ponca City, may nevertheless join meetings which are conducted electronically. Maybe we’ll like Zoom so much that we decide to continue holding some meetings with Zoom, even after the Coronavirus pandemic is over,” Bob says.

Liz Hiles of the Greater Cincinnati Ostomy Association has already hosted several Zoom calls for her group and hopes participation will increase. “I like the option on a number of levels and hadn’t previously considered it. I need to learn more about how to conduct and make it more productive. I like it for the younger folks who may be on the go or traveling. Though that could also apply to older populations too. I also like it for those that may be homebound or in a facility for whatever reason. Hospital, rehab, nursing etc.” Liz also organized a Zoom call for a group of young adults who all connected at last year’s UOAA National Conference and have tried to stay in touch on Facebook ever since.

Remember even if you have never attended a UOAA support and information group in the past you can always reach out and call a local leader nearby you for support. If they are not holding virtual meetings and you are familiar with the technology, perhaps ask if they need a volunteer like you to help them set it up for the group. Use whatever technology you and your group are comfortable with.

You can also use a landline to call into the group to chat, if you don’t have a smartphone or a camera on your computer. Zoom offers a free version if your group does not want to invest in a professional account. Members will just need to log back in when the meeting time hits its 40-minute limit. In recent weeks Zoom has responded to privacy concerns and it is suggested to use the password option for added security. Also, the Federal Trade Commission recently shared guidelines on staying safe while video conferencing.

This is a time for all of us to reach out and make sure our community is safe and supported. Although we are apart for safety, we can still remain connected and together.