Many of us with chronic illnesses have struggled throughout this pandemic with accessing timely care. One issue I’ve faced is because of my gastroparesis and other functional gastrointestinal conditions (IBS, SIBO etc.) acting up, my weight has been fluctuating a lot these last several months. As a result, my stoma size has been changing every week or two. With that, I’ve suffered a lot of ostomy leaks but even more skin irritation. While I’ve worked with my ostomy nurse virtually the last couple months to get my skin issues under control, I keep thinking of my ostomate family online and how you all may be handling your ostomy care in these times of telehealth.
With this in mind, I sat down with two passionate ostomy nurses who are also UOAA volunteers and support group leaders to understand how they’re helping patients who may be struggling during this pandemic. Gina Day and Lydia Beal are two leading Ostomy/Wound Care nurses who are based in Pennsylvania and in Maine. They are working with ostomates virtually around the country to help them manage their skin breakdowns and general ostomy concerns.
By way of background, Gina and Lydia started Today’s Ostomy Solutions as an online clinic that opened up in August 2019 just in time for the pandemic. They have set up an ostomy clinic that provides telehealth services to ostomates and their caregivers. They address both new and ongoing concerns regarding pouching challenges, skin irritation and emotional distress among many other considerations around living with an ostomy.
The thing that stood out in our conversation was how passionate Gina and Lydia are about giving patients quality of life back after ostomy surgery. Per Gina, “When someone goes through a loss (such as a loss of their intestines), they also go through a grieving process. Our goal is to help ostomates move through the phases of grief without feeling alone.”
Covid-19 & Ostomy Life
Gina and Lydia highlighted that this feeling of loss and grief has only been magnified during the pandemic. There are many additional challenges ostomates are facing during this time, including the following:
- Shipping delays for ostomy supplies
- Fears of the virus for oneself, loved ones and/or caregivers
- Feelings of isolation
- Limited surgeries or surgeries delayed, cancelled and/or rescheduled
- Reduced accessibility in meeting with healthcare providers
- Loss of in-person support groups and adjustment to virtual meetings
In addition, many ostomates may be older in age and/or immunocompromised at any age due to medications as well as pre-existing conditions. And the unknowns around these factors have created significant fear in our ostomy community. The general understanding per two renowned colorectal surgeons, Dr. Stefan Holubar (Cleveland Clinic) & Dr. David Schwartzberg (Mather Hospital), is that patients with ostomies are generally not at greater risk of contracting Covid-19 (see tweets below). The major exception to that is if ostomates are on immunosuppresants and/or are elderly with high-risk pre-existing conditions (see CDC website for a list of high-risk conditions: https://www.cdc.gov/coronavirus/2019-ncov/need-extra-precautions/people-with-medical-conditions.html).
Preparing for your Televisit
Many of you may be wondering how a typical telehealth appointment runs for ostomates. Gina and Lydia shared that they provide a secure and private platform where ostomates are able to have their needs met virtually in the comfort of their own home. Patients are able to schedule appointments, enter personal information, sign and accept all HIPAA and consent forms, share symptoms and/or reasons for their visit along with checking for insurance coverage all via their platform before meeting with Gina or Lydia.
Patients usually need a phone or iPad with a camera to connect with Gina and Lydia. This allows the ostomy nurse to see the ostomy site. If this is uncomfortable to do while trying to change your ostomy appliance, they recommend taking photos right beforehand and sending to them via their secure online portal so that you can discuss options during the televisit.
Gina and Lydia generally recommend having a caregiver or family member present to help with the visit as it is difficult to maneuver changing the appliance, monitoring output and holding the camera all at once. A caregiver can also help after surgery when patients may have trouble remembering all the new ostomy lingo and steps to change the appliance.
During the telehealth visit, they work with the patient and caregiver to discuss different options for what may help with skin irritation and other pouching concerns. They develop a personalized care plan and detailed visit summaries in which they include suggestions for products and appliances for each client based on their individual needs along with step-by-step directions for ostomy changes.
And voila, there you have a smooth telehealth visit to help you address your ostomy concerns!
The Future of Telehealth for Ostomates
So how do we move forward knowing that this pandemic isn’t coming to an end anytime soon? I think by embracing the features of telehealth for wound and ostomy care, whether that be for a new visit right after surgery or for regular follow-ups to stay on top of our skin and care.
When I asked Gina and Lydia about this, they shared, “telehealth and ostomy care together are the wave of the future. We are so hopeful that telehealth and virtually networking and connecting will allow for an integrated foundation for patient care, filling gaps in support and care and building a culture of advocacy.”
Gina and Lydia also told me that the Covid-19 pandemic, as horrific as it’s been, has opened doors to allow patients to feel more comfortable with virtual visits. In many ways, we patients had it rough before, having to leave our homes all the time for routine appointments. To this end, Gina and Lydia mentioned, “Our mission is to have ostomates live life with confidence. Many ostomates are challenged to leave their homes because of embarrassment or no clinics or ostomy nurses in their local areas. Many have to drive far to get the care they need. Now that’s not as much of a concern. By using telehealth, patients can have an ostomy nurse right at their fingertips.”
Support Services & Resources
As volunteers with the UOAA, Gina and Lydia run a support group open to all ostomates: https://www.facebook.com/poconos2016/. To learn more about the work Gina & Lydia are doing, you can follow them on Facebook: https://www.facebook.com/todaysostomysolutions/. You can also check out their page on Instagram: https://www.instagram.com/online_ostomy_clinic.
For additional resources and information about life-saving ostomy surgery, please check out the UOAA website: https://www.ostomy.org/.
So, own your Crohn’s, own your ostomy, and take charge of your ostomy care and routine during the pandemic. Because we all deserve good care no matter the circumstances!
You can see the full article at OwnYourOwnCrohns.com