Dec 2016 – I was invited to spend a few days in Orlando, Florida to attend both the AIBD conference and the IBD Social Circle Summit with other IBD advocates.
For those who don’t know, AIBD (Advances in Inflammatory Bowel Disease) is where healthcare professionals go to discuss the latest research and best practices for treating patients with Inflammatory Bowel Disease. Some of the most well-known gastroenterologists come to this event, and it offers a great opportunity for other gastro docs to brush up on their knowledge.
Me, along with over a dozen other IBD advocates came to this event not only to learn more about the latest science but also to connect with each other and discuss how to become better advocates for ourselves and other patients.
I learned a lot during this trip, and had a chance to record several videos that will come out soon, but here’s how my time in Orlando went!
Thursday, Dec 8, 2016
My trip starts in the middle of the night. Since my flight was leaving at 7:30 that morning, I needed to get up well ahead of time to make the hour-long drive to the airport with enough time to spare to get through airport security.
I decided to fly with carry-on only, just like with my previous trips. Along with my carry-on luggage, I also brought a new backpack that allowed me to bring extras.
I hailed for an Uber to pick me up and the driver came in a Mercedes Benz that was pimped up like a nightclub! Needless to say, it was one of the best Uber rides I’ve taken!
The airport was pretty empty when I arrived and I was able to get through security without any trouble at all. There was no question or fuss about my ostomy.
My flight was smooth and enjoyable. I picked a window seat and was able to see some beautiful sights once we got past the clouds north of North Carolina!
After landing at Orlando Internation Airport, I took a taxi to the Walt Disney Dolphin Resort. This hotel is beautiful, and we often gathered around “the tree” to chat and meet up before going to our sessions.
I was one of the first people there but was later met by Stephanie of the Stolen Colon. I’ve known Stephanie for years and consider her one of my ostomy heroes. It was so cool to finally meet her in person!
We grabbed lunch at one of the hotel restaurants and I ordered an epic salad while we chatted and waited for a few others to join us.
It took forever to check into my room, but I was able to attend a few of the AIBD sessions while I waited.
The sessions are always packed, and the speakers who presented did a wonderful job in explaining the science – even at my level.
After finally getting my room and settling in, a group of us went out to a Thai restaurant for dinner.
The food was great, and vegan options were available without trouble. This is something that would not be the case at other restaurants we visited throughout the week.
With the exception of Sara Ringer and Dan Sharp, who I had met in Ann Arbor earlier in the year, this was the first time meeting the other advocates at the table. These were all people I’ve known for years through their online advocacy work, and it was fun to joke around and have a good time together.
We ended up going to a karaoke bar afterward, but not before seeing some of the beauty that Disney and the resort had to offer.
I went to bed sometime after three am, but we had a busy day scheduled for Friday.
Friday, Dec 9, 2016
Friday was a day filled with education and group sessions.
I was able to meet the rest of the advocates as we shared ideas and asked questions.
In between the IBD Social Circle meetings, we had a lot of time to visit the AIBD exhibit hall to speak with exhibitors and read the latest research abstracts. There were hundreds of abstracts covering all things related to IBD and the treatment that follows. I’m hoping to cover some of that information in a future video or article.
A particular session that was both entertaining and educational was one that Dr. Higgins co-presented. It was a case study of a young lady with Ulcerative Colitis and it was presented in the style of those “choose your own path” books where multiple choice questions were given at various points in their patient’s timeline for the attendees to answer.
The case study had everything you could imagine in it: drama, suspense, sex, tragedy, joy. As a patient sitting there, I found it fascinating to hear how different doctors would approach this patient in different ways.
The case study also revealed the importance of patient education. Themes of non-compliance, refusal to take recommended treatments, and being unwilling to have surgery were all things that a little education could have helped to avoid. Many lessons to be learned about that one!
One of the highlights of the day was the panel discussion we had with three well-distinguished IBD specialists: Dr. Edward Loftus, Dr. Peter Higgins, and Dr. Tauseef Ali. During this session, we were split up into groups where we had a chance to speak with each Dr. individually.
Lots of questions came up and many answers were given by these amazing doctors. I love and appreciate the fact that these doctors are so active and willing to share ideas with patient advocates.
We spent the evening by “the tree” and planned for another busy day to come the next morning.
Saturday, Dec 10, 2016
The first half of the day was spent attending more research sessions.
One of the sessions that I planned to attend was titled “Is there an optimal approach to prevent recurrence in postoperative Crohn’s Disease” given by Dr. Miguel Regueiro. I took particular notice because it spoke to helping patients who were exactly in my situation.
After a few more sessions (and lunch), a bunch of us decided to record a few videos on topics that have been requested.
Having known Megan (The Front Butt YouTuber) for years but never having met her in person, the opportunity to do a video together with her was so exciting! I can’t wait to share what we recorded that day, but it does touch upon several topics that have been requested by you guys.
The latter part of the day was spent with the rest of the IBD Social Circle for a Patient Empowerment Workshop.
Dr. Tiffany Taft of Oak Park Behavioral Medicine is a psychologist who specializes in helping patients who have chronic digestive illnesses. She gave a presentation as we discussed patient empowerment, the challenges of dealing with burnout and “compassion fatigue”.
We got really involved in the conversation as we shared our own stories and experiences.
An IBD Social Circle Planning Session was next, and that was followed by dinner.
For dinner, we went to a place called Copper Canyon Grill. These guys did not make it easy for a vegan to eat as literally everything on the menu had animal ingredients in it – and butter was added to just about everything as well.
Fortunately, the chef was apparently vegan, so a nice pasta dish was whipped up for me.
I’ll be quite honest in saying that traditional restaurants in Orlando don’t seem to be very veg-friendly, so keep that mind if you decide to plan a trip here.
Because many of us would be leaving the next morning, we spent many hours conversing near “the tree”. It was so bittersweet, and saying goodbye to these amazing people is never easy.
But the fun wasn’t over and Sunday would bring more excitement to my trip!
Sunday, Dec 11, 2016
This was a day to remember!
Dan Sharp, Sara Ringer, Megan and myself all took a trip to Universal Studios. It was my first time there, and I was thoroughly impressed.
We got Attraction Assistance Passes, which allowed to get on rides without having to stand in long lineups. For anyone with an ostomy, j-pouch or digestive disease, it’s always worth checking on whether your local park offers these passes, too.
The process is easy and we were able to get on pretty much every ride we wanted to without waiting for more than 10 minutes.
Universal Studios has big rides and many spectacular 4D rides as well. If you’ve never been on a 4D ride you have no idea what you’re missing!
Everything from the King Kong ride to Spiderman was mind-blowing as you become part of a movie! Even stuff like water and real fire are included in many of the rides to help with the immersion.
We went on several of the coasters, including the large Hulk ride. None of the rides posed a problem for my ostomy and I’ll have a full video on the experience soon.
For dinner, we decided to grab an Uber (who nearly almost dropped us off in the middle of nowhere) to take us to a vegan restaurant called Ethos Vegan Kitchen.
There were so many options to choose from and the prices were reasonable, so we were in heaven at that point!
Sara, Dan and I headed off to our new hotel before calling it a night. Disney World would be next!
Monday, Dec 12, 2016
The day started off early and Dan, Sara and I went to Disney World. Our Uber driver was a little more competent than the one we had the night before, but we still managed to get lost looking for the guest drop off.
After spending several minutes walking across the large parking lot, we were finally at the gates – the ferry, that is!
I had no idea what to expect, but Disney is huge! It’s actually made up of many separate parks, but the first one we decided to visit was the Magic Kingdom.
We took a short ferry ride before making it to their security gates. Like all parks, your bags are checked before you proceed to the entrance.
After we were cleared we searched for guest services in order to get our ride accessibility passes.
The process is fairly quick, and I’ll have a full video on it, but I was surprised they needed a photo of us too. This was in addition to the fingerprint scan they took during ticket processing.
We were finally in!
This place is crazy busy. It took us a while to get around, even using the Disney app. But we did eventually find a few rides we wanted to try.
Like Universal, the ride access passes gets you into the “express lane” of a ride so you don’t have to wait as long. Unfortunately, Disney gives you a time before coming back to the ride, then has you wait in a very busy “express lane”, which means some rides could still have you waiting an hour or more.
Because of this, we weren’t able to enjoy many of the rides, but we did manage to get on a few more at the Hollywood Studio Disney park.
The Hollywood Studio park is very different from the Magic Kingdom, and adults would have more fun at this one.
It was still really busy and because of all the walking and standing, Sara needed to use a wheelchair to get her through the rest of the visit. This is an unfortunate reality of having IBD. Before my ostomy, when my inflammation was still high, I suffered from joint pains on a daily basis. I really feel for her and others who still have these ongoing symptoms.
We left Disney to grab dinner at the vegan restaurant, Ethos. More food and more laughs!
I ordered a salad with mock chicken strips, as well as a shepherd’s pie (which they call a Sheep’s Pie). Everything was delicious, and even the stuff Dan and Sara ordered looked mouth-watering!
Tuesday, Dec 13, 2016
My last day in Orlando, but we were going to make it count!
Megan joined Sara, Dan and I and we headed to Bill Frederick Park to shoot some video.
I loved spending the day with these guys, and I wish the day would never end.
The park we picked was beautiful and the weather was hot and sunny – a stark contrast to what it was like back in Toronto!
We live streamed a few videos to Sara’s Facebook page (Inflamed and Untamed) and we also recorded a few videos on topics we plan to publish later on.
I had to be at the airport for 4:30 that afternoon, so we grabbed a bite to eat and spent some more time talking.
This was such an amazing trip, and I could have spent a month in the company of these amazing advocates. If you are a patient who feels alone or abandoned, know that you have a group of people just like you who are working hard to educate and empower others.
I want to thank Janssen for making this trip possible, the doctors who have dedicated their lives to helping people with IBD, and the advocates who inspire and motivate me to do more for others.
Thank you all from the bottom of my heart. Until next time!
IBD Social Circle Advocates at AIBD 2016
- VeganOstomy @VeganOstomy
- Front Butt YouTuber @FrontButtYouTR
- Dan Sharp @DanSharpIBD
- #purpleproject @girlsgotguts
- Christy Stone @CrohnieBologna
- GutlessandGlamorous @GutlessGlamour
- Marisa Lauren Troy @JournalingIBD
- R. Stevens @ryan_crohnsguy
- Crohn’s Colitis @CrohnsEffect
- Empowering Patients @Empoweringpts9
- Sara Ringer @Sara_Ringer
- Aaron Blocker @AaronBlockerIBD
- Great Bowel Movement @TheGreatBM
- Stephanie Hughes @smlhughes
- Jaime Weinstein @JaimeEditor
- Amber J Tresca @aboutIBD
- TheCrazyCreoleMommy @CrzyCreoleMommy