By Zahraa Chorghay
In Zahraa's fourth Caregiver Conversations for CCYAN, she chats with her friend, Gnanu, on what it means to support someone with IBD, with a focus on disability access and unlearning judgement.
Caregiver Conversations III: Supporting Someone with IBD
by Zahraa Chorghay
In Zahraa's third Caregiver Conversations for CCYAN, she chats with her friend -- let's call her "Kelly" -- on what it means to support someone with IBD, including lessons learned from the textbook to real life, the importance of patience and flexibility, and Kelly's insights on what we can salvage with friendship even in the throes of IBD.
A "Day Off" with IBD
by Alexis Gomez (California, U.S.A.)
Join 2025 CCYAN Fellow Alexis on her “day off” with IBD, as she takes care of medical tests, navigates insurance, and flexes her advocacy skills (plus, engages in some self-care along the way)!
A Week in my Life with IBD (in remission)!
by Michelle Garber (California, U.S.A.)
Join 2025 CCYAN Fellow Michelle for a week in her life as a young adult with IBD!
Voice-over:
I start this week looking my best,
Make-up on, energy up, and Purim Party dressed.
I have a good time with friends I adore,
My night routine later becoming SUCH a chore.
I then wake up exhausted and can’t get out of bed,
But I still do my work and eat, with the few spoons I have left.
The following day, I am more energized,
Entering a room I know is so sterilized.
I fight through the fatigue brought on by my infusion,
Work, eat, pack my lunch, and take my meds before my day came to its conclusion.
I now begin my work-week by getting up at 6,
Drown myself in coffee, one of my favorite tricks!
I go to my internship, and straight into my routine,
Notes, calls, clients, group therapy, and a lot of caffeine!
After work, I can’t do a lot,
But look at this cute video I got!
I awaken fatigued, joining class with my dog,
Eat, complete assignments, and get ready for work tomorrow…all with pretty bad brain fog!
The next day still comes quick, and to my internship I return,
I have a great session with a client, but for dryer weather I yearn (*the rain scares me*)
The chef made us salsa, which I completely devour,
Before heading home in what felt like a shower.
My day begins again with food and class,
Doing moving-day duties while trying to survive saying, “This too shall pass.” (*yes it will!*)
I call my best friend, who always makes me elated,
Thankfully managing to finish my speech and shower, no this isn’t x-rated. On this last day,
I wake up and eat,
Put on some make-up, and hop in my brother’s passenger seat.
I head to a gallery featuring art by the IBD community,
Presenting my speech while feeling such unity in our autoimmunity (*hehe*).
I eat more food before waiting in line,
The concert was great, but GOD my poor spine!
While I wake up so drained, I still remember the night I had,
So just don’t push too hard or use all your spoons, and life with IBD can sometimes be rad.
Caregiver Conversations II: Supporting Someone with IBD
In Zahraa's second Caregiver Conversations for CCYAN, she chats with Irum on what it means to support someone with IBD, including lessons learned, the importance of patience and self-care, and Irum's words of wisdom on how well-being is a constant, concerted, community effort.
Check out the first Caregiver Conversation if you have not yet.
Caregiver Conversations: Supporting Someone with IBD
In Zahraa's first Caregiver Conversations for CCYAN, she chats with Arna on what it means to support someone with IBD, including lessons learned, the importance of patience and communication, and Arna's relationship advice.
Beverages and IBD: Science and Taste
Mahdwer Ayalew, one of our CCYAN Fellows for this year, shows her favorite drinks and explains the scientific evidence for their positive health effects. Read more on the effects of turmeric, black pepper, and green tea in the articles linked below:
A Day in the Research Lab: IBD and the Microbiome
Our CCYAN 2023 Fellow, Karen Mancera, is a second-year PhD candidate in biomedical engineering at the University of Florida. Her specialty focuses on IBD and the gut microbiome--check out this video for sneak peek on her daily research work and a look inside of a medical research laboratory.
A Day in the Life of IBD: Colonoscopy
Content warning: colonoscopy, needles, medical procedures
Our CCYAN Fellow, Mahder Ayalew Bezabih, shares her experience of her first colonoscopy in seven years.
Crohn's and Colitis Young Adults Network Journey
Dr. Fasika, brilliant mother, doctor, and 2022 Fellow for the Crohn's and Colitis Young Adults Network (CCYAN), shares her thoughts on her fellowship journey.
Thoughts On Pregnancy and IBD
In this video, 2022 Crohn's and Colitis Young Adults Network Fellow, Fasika, shares her experience with pregnancy and childbirth while having IBD. You can view the articles that Fasika has written about on Postpartum Anxiety & IBD here https://www.ccyanetwork.org/news/post... and one on Pregnancy & IBD here https://www.ccyanetwork.org/news/preg...
How to Support Your IBD Friends
CCYAN fellow, Maalvika, interviews her good friend, Mitanshi, on how to support your friends through their IBD diagnosis and journey and gives great advice for fostering great relationships with your chronically ill friends.
Learn How to Make Indian Chai Tea
By: Maalvika Bhuvansunder
Disclaimer: This tea may not suit everyone, as each person with IBD has different dietary restrictions and what works for one may not work for the other
The recipe and instructions for this delicious drink are below:
Indian Chai -serves two
Ingredients:
Tea powder: 1 teaspoon*
Ginger: one tiny piece
Cardamom: 2 pods
Clove: 2 pieces
Cinnamon: 1/4th of a stick or a small piece
Water: one teacup
Lactose free milk: one teacup* (Video recipe uses @almarai lactosefree milk)
Sugar: 2 teaspoons*
Method:
In a tea pot, add in one cup of water
Crush together ginger, cardamom, clove, cinnamon and add them to the water
Boil the above on low flame for 3-5 mins
Once the color of the water gets a slight tint, add in 1 ½ teaspoon of tea powder
After a minute, add in one teacup of milk
Add in 2 teaspoons of sugar and let it boil on high flame
When the tea comes to a boil switch, off the stove and strain the tea.
Serve with your favorite snacks or biscuits.
*Use decaf black tea if caffeine is an issue(ex: Lipton decaf black tea bags)
*You can replace the milk with any plant based ones or have the tea black if preferred
*You can add in any other spices such as saffron or mint, based on ones liking
*Sugar can be skipped
The recipe can easily be doubled or reduced. Add equal quantities of water and milk
To the Girl Staring Back at Me
Natasha Kacharia, was diagnosed with ulcerative colitis her junior year of high school. In this video, she shares how she failed to recognize herself in the mirror and eventually learns to appreciate her new identity with her diagnosis.
Photo by Lukáš Dlutko from Pexels
This article is sponsored by Connecting to Cure.
Connecting to Cure Crohn’s and Colitis is a grassroots, volunteer organization that brings together the IBD community with a focus on caregivers and families. Connecting to Cure Crohn’s & Colitis provides community and support for those coping with these chronic illnesses, while raising awareness and funds for research as well.
It's Stelara Injection Day
Follow along with Savannah on her Stelara injection day! Learn about what she does to make the day easier on herself.
Photo by Karolina Grabowska from Pexels.
Moving into Stanford Except I'm Chronically Ill and Stuff
Hi! My name is Nathalie, one of the CCYAN fellows of 2021!
Spend some time with me while I talk about what it’s like to move when you have a chronic illness! If you want to find out more information about me or CCYAN, be sure to check out @ccyanetwork on social media.
This content is sponsored by Lyfebulb.
Lyfebulb is a patient empowerment platform, which centers around improving the lives of those impacted by chronic disease.
This video was created by Nathalie Garcia from the U.S.
Photo by Ricardo Esquivel from Pexels.
Paint With Me: Finding a Coping Skill for IBD
Hi! My name is Nathalie, one of the CCYAN fellows of 2021!
TW: mental health
Today I talk about how I found what coping skill worked best for me to manage my IBD and my mental health. If you want to find out more information about me or CCYAN, be sure to check out https://www.ccyanetwork.org and @ccyanetwork on social media.
If you or a loved one with IBD is struggling with mental health and needs immediate help, please cal 911, text START to 747-741 or call 1-800-273 TALK (8255).
Remember, you are not alone.
This video is sponsored by Lyfebulb.
Lyfebulb is a patient empowerment platform, which centers around improving the lives of those impacted by chronic disease.
Paint With Me: Managing IBD and Depression
TW: depression
Hi! My name is Nathalie, one of the CCYAN fellows of 2021! Today I talk about my experiences dealing with IBD and depression.
“I think sometimes when you’re dealing with depression, it never feels like anyone can understand you. It’s kind of like you’re screaming at the world for just anyone to listen to you, and somehow, no one can hear you. And no one can see you, because of your disability and the fact that it’s invisible. But I’m here to remind you that I can hear you, and so can other people in our community.”
If you or a loved one with IBD is struggling with mental health and needs immediate help, please call 911, text START to 747-741 or call 1-800-273 TALK (8255). Remember, you are not alone.
This video is sponsored by Lyfebulb.
Lyfebulb is a patient empowerment platform, which centers around improving the lives of those impacted by chronic disease.
My IBD Story
Get ready with CCYAN fellow Nathalie Garcia as she shares her IBD diagnosis story and how Crohn’s disease affected her at such an early age.
Growing up, Nathalie’s brother almost lost his life due to ulcerative colitis following a misdiagnosis from lack of medical testing. A few years later, Nathalie began experiencing signs of IBD herself when she was just 15 years old. Because of her family history, Nathalie was tested early for IBD only for the results to come out as inconclusive. At 16, however, she collapsed during her high school cross-country race and was finally diagnosed with Crohn’s disease.
Nathalie dives into her diagnosis journey in her latest video and shares the ups, the downs, and all the relatable moments in between.
This video is sponsored by Lyfebulb.
Lyfebulb is a patient empowerment platform, which centers around improving the lives of those impacted by chronic disease.
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.