June 2018 – I was invited to speak on a panel discussion at the WOCN Conference and it was amazing!

Intro

For those who don’t know, the WOCN Conference is an annual conference held in the United States by the Wound, Ostomy and Continence Nurses Society. This year happened to be the society’s 50th Anniversary, so they’ve been doing this for a very long time!

I was able to attend because the great people at Shield Healthcare had invited me to speak on a panel along with three other ostomates!

Trip Prep

Not a lot of planning needed to go into this trip. Because I had recently been to both Chicago and Regina, I already had a system in place to make it much easier to pack.

Along with my regular toiletries, I also packed enough ostomy supplies to get me through several weeks if need be. Since my ostomy supplies don’t take up a lot of room, I don’t mind bringing a lot!

Because my flight would be early the next morning, I change my ostomy appliance the night before and put my bag in the horizontal position across my stomach (because I would be wearing my StealthBelt Pro for the entire trip).

And who could forget snacks?! I tend to always bring Clif Bars and Mr. Noodles with me on these trips. Unfortunately, Mr. Noodles weren’t on sale, so I ended up with a Walmart brand of noodles (which, by the way, are terrible compared to Mr. Noodles!).

June 3th, 2018 (Leaving for Philadelphia)

My flight was scheduled to leave at 9:15 am. Because I live over an hour away from the airport, I had to get up pretty early this morning if I wanted to make it there for the recommended 2-3 hours ahead of my flight.

The Uber ride was smooth and traffic was light (Sunday morning traffic = no traffic). Unlike previous trips, the weather was really nice in Toronto that morning.

I did arrive at the airport with plenty of time to spare, and the security clearance was a breeze (it usually is).

The size of my airplane matched the size of the gate – that is to say, it was tiny. But with such a short flight, there was no need for a huge plane anyway.

The plane was so small, in fact, that we boarded from the ground! There’s a first time for everything, and I got a kick out of that.

I do want to mention that while I tend to travel with carry-on only (backpack and small luggage), I always make sure to bring two sets of supplies in case I part with either of those two things.

Usually, my luggage comes with me on the plane, and it’s put in the overhead bin while my backpack stays under the seat in front of me. On this flight, my luggage needed to be put in the cargo hold (everyone’s luggage did) because of the small size of the plane. Always be prepared for the unexpected!

While I knew that the flight would be short (under 2 hours), I made sure that my ostomy bag was empty before boarding the flight. I was able to pick my seat ahead of time and went with a window seat in the back row – close to the bathroom if I needed it, but a great view nonetheless!

I’m an advocate for window seats, and I would encourage anyone who flies to take it if they have the opportunity to. Even when the weather is crappy on the ground, it’s ALWAYS sunny and clear above the clouds! But the view when there are no clouds is spectacular, no matter where you’re flying to.

The flight was turbulent and being in the back row of a small plane did not help. It was so turbulent, in fact, that it took quite a while to finish a small glass of orange juice I had on board.

But I landed in Philadelphia and was happy to be in a new place! I took another Uber ride to get to my hotel and was able to see the city for the first time.

I won’t lie, the drive from the airport to the city does not do Philadelphia any justice. The highway shoulders were lined with automobile parts, pieces of tires, and debris – things I’ve never seen in such large quantities on any roadway anywhere. The city itself looked “rough” and aged. A stark contrast to the drive towards the hotel I was staying at in Chicago.

My first impression was not great, but that would change in a few days time!

We were staying at the Marriot hotel, which was right across the street from the convention center that the WOCN Conference was being held at. This hotel is located very close to many historical sites, restaurants, and other delights, which was awesome!

There was nothing planned for the rest of the day, so I enjoyed a quiet evening of eating noodles and watching TV! Of course, I also took this opportunity to take care of my email inbox, which would be flooded over the course of the next few days!

June 4th

The panel discussions I would be in would not start until the early afternoon, but I did want to get into a few educational sessions before that.

I wish I realized this earlier, but many of the seminars being given required pre-registration and by the time I began looking at the schedule they were already full. My lack of foresight was partially due to the fact that I didn’t know how the days would go, but also because I wasn’t expecting to be doing anything more than the panel discussions!

The sessions I attended included:

Ostomy Telehealth for Cancer Survivors: The Ostomy Self-Management Training (OSMT) Trial
Matthew Ciabattoni, BSN, RN-BC, CWOCN

Adults with a Permanent Ostomy: Quality of Life, Depression and Suicide
Diane R. Maydick-Youngberg, EdD, RN, ACNS-BC, CWOCN

Stomal and Peristomal Complications and the Capacity for Self-Care
Vera Santos, RN

The seminar on telehealth was really interesting, and it wasn’t the first time hearing of telehealth being deployed to help patients. This was even a subject that was talked about during the AIBD conference I was at late last year, and no doubt it will continue to be a topic of interest in the future.

The idea of ostomy telehealth is important because I tend to hear many patients tell me that they simply don’t have access to a stoma nurse and are often lost when it comes to ostomy care. And even for those who have access to a nurse, saving several hours a day of not having to drive to a simple appointment can be extremely convenient.

It makes me really happy to know that depression (and mental health in general) is being talked about more and more at these conferences. Doctors and nurses are finally starting to include mental health wellness in their overall treatment plan for patients, and for someone going through ostomy surgery, the risks of depression are higher. This is a topic that also important for someone living with IBD, and I’ve written about it in the past.

I wasn’t able to take photos of the presentations due to the WOCN rules, but I did take notes. It was reported that 36% of ostomates report depression at some point and 8% had thoughts about suicide or followed through with it. We have a long way to go!

After the sessions were over, I headed to the main exhibit hall, which opened at noon.

Oh. My. God!

I’m sure most of the people there could spot my ear-to-ear smile as I walked into a room full of companies who make or supply ostomy products. It was like walking into a candy store as a kid!

I knew ahead of time who was exhibiting, but I wanted to stop in to say hi to some very specific people.

Maggie Baldwin of LetsTalkIBD was there with 11 Health. I’ve been a fan of her for years, and we met for the first time at HealtheVoices in Chicago early this year, but I was so glad to see her again at this conference.

Seeing that B. Braun was there, I had to check in with them to see if my friend Julie was working the booth, and sure enough, she was!

Julie was my chaperone in South Africa when I was there to present at the WCET conference in 2015 and we had such a great time there seeing penguins and looking over Cape Town at a thousand meters up!

I was able to also quickly say hi to the folks at StealthBelt, Kem Enterprise (the makers of the Osto Ez-Vent) and the UOAA among others.

I really wish I had more time to walk the exhibit hall. There were so many things to see and I would have loved to have seen them all! Unfortunately, I would have less than an hour to explore the exhibits because of when the panel discussions were scheduled.

Speaking of the panel discussions, I was finally able to meet my co-panelists and the Shield Healthcare team!

(Note: I don’t have any videos of the panel discussions. Shield had a professional photographer/videographer there (hey, Emily!) and they will be posting something in the near future on their website).

The panel consisted of me, Laura Cox (Ostomy Lifestyle Specialist at Shield Healthcare), Brian Greenberg (founder, Intense Intestines Foundation), and Kelsey Scarborough (OstomyLife Co-Moderator).

I’ve met Laura a few times before, and I’ve been a fan of her since before my ostomy surgery (she was one of the first people I discovered on YouTube who was talking about life with an ostomy!), but this was my first time meeting Brian (despite doing a webinar with him) and Kelsey. All of us have an ostomy because of IBD, but we all have very different stories to tell!

Our panel discussions were 30 minutes long and we did two this afternoon.

The audience consisted of ostomy nurses and we were able to answer the following questions:

1. What were your symptoms and what was the diagnosis that ultimately led to your ostomy?

2. Many people are sick for a while before they undergo ostomy surgery. How was your interaction
with your doctor during this time?

3. What advice do any of you have for an Ostomy nurse?

4. Put yourself back in the hospital … With patients discharged so soon after surgery, many new
ostomates go home without understanding how to self-manage their ostomies. What are the
must-have tips for new patients?

5. Having an ostomy represents a positive change, but not all days are good. How do you handle
bad days?

6. Now that you’ve lived with your ostomy for a few years, what are some 3 things that you wish
you had known about life with an ostomy that you wish you had known sooner?

7. How often do you see your doctor or WOCN, and how has your relationship with them evolved
over the years?

8. What is your biggest accomplishment with your ostomy and can you tell us a little bit about the
experience?

I could tell that our answers were giving the nurses a lot of insight and tips they could use to better care for their patients.

After each discussion, I would often have a nurse (or two, or three) coming up to say thank you to me and the VeganOstomy website. This also happened as I walked the exhibit hall floor and it means so much to hear that my experience and content is being used by nurses to help other patients.

After the panel discussions were over, Laura and I recorded a video together. The video is an interview and it’ll be posted on the OstomyLife website/YouTube channel at a later date. Part of our time was spent recording “b-roll” which had us outside of the hotel for a bit.

We visited the Reading Terminal Market, which was absolutely amazing, and we discovered a burger place that made vegan burgers right next to the hotel!

For dinner, all four of us (and the Shield Healthcare team) went to Little Anita’s New Mexican Food (previously Smokin Betty’s restaurant). While it wasn’t obvious by looking at the menu, they were able to accommodate me quite nicely and had several vegan options to choose from.

That evening, several of us got together in my hotel room to chat the night away! Meeting with friends like this is often my favorite part of traveling!

June 5th (Last day in Philadelphia)

This would be the last day of this short trip, but we planned to make the most of it by exploring Philadelphia all morning!

Brian, who acted as our tour guide, took us to see some of the city’s tourist hot spots.

When you get to explore Philadelphia, you come to realize how beautiful it really is. That drive from the airport was already out of my mind by now!

Of course, we visited the famous steps from the Rocky movie ;)

For lunch, Laura, Kelsey and I went to BurgerFI, which served something I was really hoping to try at some point: The Beyond Burger!

The Beyond Burger is a plant-based burger that’s been very popular among both vegans and meat-eaters who have tried it. It’s not really available where I live, so I just had to try it!

This burger is meant to look and taste like actual meat – and it’s very impressive. So much so that I see no reason for anyone to consider beef after trying it.

When we were finished lunch, we got ready for our next two panel discussions and headed back to the convention center.

The timing of our flights out meant that we’d have to leave the conference right after our panel discussions were over. A bit of a bummer, but it is what it is.

I’m glad that I got to say bye to everyone before my flight and also got to share an Uber ride to the airport with Kelsey and Laura.

I’m going to miss everyone, but I’m so grateful to have had this opportunity!

Keep an eye out for my interview with Laura and the panel discussions by following Shield Healthcare and OstomyLife.

I want to send a thank you to the ostomy nurses at the conference. Your work is often underappreciated, but it is insanely valuable to ostomy patients.

I’d also like to thank Laura Cox for thinking of me and asking if I’d be interested in doing the panel! Of course, a big thanks goes out to Kelsey and Brian for being amazing advocates and great people. I really enjoyed being on the panel with you three!

Special thanks to Shield Healthcare for the invite and accommodations!

Photos From the Trip