Come to My Infusion Appointment with Me!
Follow along as I take you through my Remicade appointment during a pandemic. I talk through the IV process, emotional effects of Remicade and my experience with it.
IBD Symptoms Outside the Gut
“For years before I was diagnosed with IBD, I experienced the symptoms described in this video. It would have been helpful to know at a young age that these were all related to one, bigger issue!”
Accommodations in School and in the Workplace
One of the most intimidating topics after getting diagnosed with IBD is the concept of accommodations. That is why Samantha created this video to try to help answer some of the questions that may come up when starting to look for accommodations - both in school and the workplace!
IBD Week in the Life During Covid-19 | Vlog
Catch a glimpse into the life of an IBD patient during a pandemic as Lucy navigates a week of lab work, prescriptions, virtual doctor appointments, and insurance quandaries.
5 Ways to Support Those With IBD
Whether its your friend, family member, peer or co-worker - here are 5 ways you can show support to those living with IBD.
Why I Stopped Focusing on A CURE
Why I stopped using cure-centered language and how it helped me cope with my chronic illness.
How I Got Involved in the IBD Community
When I was first diagnosed when I was 15, I didn't know anyone else with IBD. Now I have friends all over the world who have IBD that I can rely on for support! Check out how I went from an embarrassed teenager to a loud and proud advocate in the community I've grown to love.
Chronic Illness in the LGBTQ Community
Photo by Sharon McCutcheon from Pexels
Happy Pride Month!
Here are some awesome resources for individuals in disability and queer communities!
Crohn’s and Colitis Foundation Support Group for Lesbian and Bisexual Women Facebook group
Find groups in your area on Meetup (search keywords like LGBTQ, disability, etc.)
YouTube channel all about disability and being queer: Jessica Kellgren-Fozard
YouTube video all about disability and sex that includes a woman with an ostomy and queer relationships
An Interview with an IBD Caregiver
In this special interview with Rachel’s mom, they talk about what it's like to be a caregiver of someone with IBD and share a part of their story.
My Experience with Chronic Illness Advocacy
Follow along with Lucy as she advocates for Step Therapy reform at her state capitol.
IBD Must Haves
Samantha takes you through her go-to useful products for taming symptoms and adding comfort in her day with her various IBD symptoms.
Samantha takes you through her go-to useful products for taming symptoms and adding comfort in her day with her various IBD symptoms.
Photo by Porapak Apichodilok from Pexels
Day in the Life: Colonoscopy Time
Come with Lucy as she takes us through her prep for a colonoscopy.
Self Image & Goals in 2020
Setting New Year's resolutions and goals can look a little different when you have a chronic illness. Here is 2020 Fellow, Lucy, and her outlook going into 2020!
Cooking with Crohn's: Gluten Free Strawberry Shortcake
With the summer heat, comes the summer treats! Watch this video of 2019 CCYAN Fellow, Leah, makes a delicious gluten free strawberry shortcake following the two recipes down below. It's important to stick to your own dietary needs to feel free to accommodate the recipe to your liking!
Recipe for Shortcake
1 1/2 cups gluten free all purpose flour
2 3/4 teaspoons baking powder
1/4 teaspoon salt
2 tablespoons sugar
3/4 cup heavy or whipping cream
1 large egg
Instructions
Preheat the oven to 450°F. Line a baking sheet with parchment paper and set it aside.
Mix the flour, baking powder, salt, and sugar together in a large bowl.
In a separate bowl, beat together the cream and egg. Pour the wet ingredients into the dry ingredients and mix to form a cohesive dough.
Scoop the dough in 1 1/2-ounce balls onto the baking sheet; use the palm of your hand to gently flatten each to about 2" to 2 1/2" diameter.
Brush the tops of the shortcakes with cream, and sprinkle with coarse white sparkling sugar.
Bake the shortcakes for 10 to 12 minutes, until they're risen and baked all the way through; break one open to make sure.
Remove the shortcakes from the oven, split, and top with berries and whipped cream. Store, well-wrapped, at room temperature for several days; freeze for longer storage.
https://www.kingarthurflour.com/recipes/easy-gluten-free-shortcakes-recipe
Recipe for Whipped Topping
1 cup (8 fluid ounces) heavy whipping cream, chilled
1/2 cup (58 g) confectioners’ sugar
8 ounces cream cheese, at room temperature
1 teaspoon pure vanilla extract
1/8 teaspoon kosher salt
Instructions
Transfer 2 tablespoons of the cream to a small bowl and set it aside. In the bowl of a stand mixer fitted with the whisk attachment or a large bowl with a handheld mixer.
Place the remaining cream and beat on medium-high speed until soft peaks form.
Add the confectioners’ sugar, and continue to beat until stiff, glossy peaks form.
Transfer the whipped cream to a separate, large bowl and place in the refrigerator to chill.
In the same bowl, place the cream cheese, vanilla, salt and reserved 2 tablespoons cream.
With the whisk attachment, whip the cream cheese mixture on medium-high speed until light and fluffy.
Remove the whipped cream from the refrigerator and add half of the whipped cream mixture to the cream cheese mixture, and whisk to combine.
Add the remaining whipped cream, and fold it into the filling carefully until combined.
https://glutenfreeonashoestring.com/gluten-free-fruit-pizza/
How to Stay Productive this Summer
With IBD's ties with anxiety, depression, and fatigue it can be hard to stay motivated. Usually when faced with commitments, I can force myself to make it through them despite being tired or having trouble focusing. However, doing stuff for myself usually takes the back burner. I become easily overwhelmed with my tasks to do for school and work, neglecting my personal needs for self-care, relaxation, mindfulness and self-compassion. So in this post, I have brainstormed and gathered tips to stay motivated, not only for the tasks you need to do but also those you should do for yourself.
Day in the Life: Finals Week
Follow 2019 CCYAN fellow, Leah, as she takes you through a day in the life of a college student living with Crohn's disease and making her way through finals week.
What to Expect at a Remicade Appointment
We follow 2019 CCYAN Fellow, Leah, as she goes to her remicade appointment for her IBD and talks about her experience with it.
When I was first diagnosed with Crohn's disease at the age of 12, my pediatrician recommended that, along with several pills including Prednisone and Pentasa (mesalamine), I start remicade infusions right away. Besides a brief few months this past year without it, I have been taking remicade ever since then. Remicade has worked wonderfully for my IBD, so much in fact that for a few years, I was able to get infusions every 11-12 weeks, instead of the regular 8 weeks. That being said, it did take several years to reach that point with no flares during that time. Now, I understand that everyone's body is different and what works for one person with IBD may not necessarily work the same for another. It's importance to listen to your body and your doctor.
As someone that was only 12 when they received their first remicade treatment, I wish that I would have been more prepared and knew what to expect. I remember my first treatment literally lasted all day because of IV complications, reactions, and a lot of tears being shed. Now that I've been going for so long, I thought it would be great to allow someone else to have that information that I was lacking on my first visit. Whether it be your first time receiving a #remicade infusion, you are going along with someone to support them during their infusion, or you're an old pro at this point, it never hurts to see someone else's experience with remicade. In the video, I go through the whole process of my infusion day, including what to wear, what to expect for vitals, and the entire unedited viewing of getting and IV and starting the medicine infusion.
Hospital visits can be scary, especially when you don't know what to expect. I hope with this, you can feel more relaxed and prepared for your next remicade infusion.
Cooking With Colitis: Chicken Noodle Soup
Winter got you down? Watch as Rachael, one of our 2020 fellows, walks you through this soup that's great for cold weather or when you're not feeling 100%. Recipe is posted and, as always, feel free to change to meet your dietary needs.
The recipe for this yummy meal can be found here:
Extra tips!
If you have homemade stock or bone broth, that would be a great and nutritious addition.
I like to add several handfuls of baby spinach at the end to get some extra greens in there.
If you want to make it veg, use veggie stock and omit the chicken. Add any extra veggies you like - greens, white beans, canned tomatoes, etc.
Based on your dietary needs, change the recipe as much as you need! The onions, celery, carrots, garlic and oil are a good base for a lot of different soups - the world is your oyster with this recipe. :)
Recipe -
Ingredients:
1 medium white/yellow onion, chopped
2-3 carrots, chopped
3-4 stalks celery, chopped
1 Tbsp each of butter, olive oil - use either or based on dietary needs/preference!
Pinches of dried thyme, oregano, basil, parsley (or to taste)
1-2 bay leaves
2-3 cloves garlic, minced or ~1 tsp garlic powder
Salt & pepper to taste
2 quarts of chicken stock (or homemade if you have it)
Shredded rotisserie chicken (one small should be plenty)
Slightly undercooked large egg noodles - use as much as you like, but usually ⅓ to ½ a bag
Directions:
Heat butter/olive oil at medium heat until hot, then add onion, celery and carrots.
Cook, stirring occasionally until onions and celery start to cook down and become translucent, about 10-15 min or as needed. Add thyme, oregano, garlic (or garlic powder), bay leaves, salt and pepper.
Cook a few minutes more, until everything smells extra delicious, and add ~1 cup of chicken stock (at least enough to cover the veggies). Bring to simmer.
Bring pot of salted water to boil to cook the egg noodles. Make sure you underook them a bit by 1-2 min since they will finish cooking in the soup. Rinse/drain.
Add egg noodles to soup mixture and simmer for 10 min. Add shredded chicken, turn heat to low, and cook for ~5 more minutes or until heated through.
Taste, season more as needed and remove bay leaves. Congrats, you’re all done. :)