From Fear to Fulfillment: Hindy’s Journey with IBD

When you're diagnosed with a chronic illness, especially as a teenager, it’s easy for your imagination to spiral.

When you're diagnosed with a chronic illness, especially as a teenager, it’s easy for your imagination to spiral. At just 16 years old, Hindy found herself standing at the edge of an uncertain future, flooded with fears about what life with IBD might mean. Would she be able to live the life she dreamed of, a life that included marriage, motherhood, and meaningful connection? What she couldn’t have known back then is just how beautifully her reality would unfold. Today, Hindy is living a life filled with love, strength, and joy. In this heartfelt interview, she opens up about her journey, from the fear and isolation of a new diagnosis to the resilience she’s discovered as a wife, mother of three, and dedicated IBD advocate. Her story is a powerful reminder that while IBD can change the road you’re on, it doesn’t take away the possibility of a vibrant, fulfilling future.

Whether you’re navigating IBD yourself (especially as a young adult!) or supporting someone who is, Hindy’s voice will leave you feeling seen, supported, and full of hope.

Before we dive in, please note: this blog post is for informational purposes only and should not be considered medical advice. For guidance specific to you or your child’s treatment plan, please consult your healthcare provider.

Now, let’s get to the interview!

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Can you please introduce yourself? Tell us a little bit about yourself and how you came across IBD Connect!

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Hi! I’m Hindy and I’m 29 years old, although I still feel like I’m 19 :) I was born and raised in NY - approximately 30 minutes from NYC. I now live in South Florida with my husband and three children; two are twins.

Can you please share your diagnosis story? What was it like being diagnosed with IBD at 16? How did your diagnosis initially impact your daily life?

I always say I was perfectly healthy until I wasn’t. I was the girl who didn’t miss a day of school and was secretly jealous of the girls who would get strep and get days off of school (I went to a girls-only school). The summer before I got sick, I had a severe allergic reaction to poison ivy. I had always been allergic, but that reaction was the most extreme one I had ever experienced. I believe that reaction triggered something in my immune system. Interestingly enough, I have not had an allergic reaction to poison ivy ever since then. A few months later, right before I turned 16, I developed very severe symptoms. When I went to the bathroom, all I saw in the toilet was a ton of blood, and I was running to the bathroom many times per hour. I was terrified of what it might be, so I hid it from my parents. I was also losing weight and rapidly getting weaker.

It didn’t take long for my parents to start noticing something was wrong. I remember my father asking if everything was ok because I was running to the bathroom very often. I lied and said that I was fine.

Then, I started vomiting. Because I was hiding my other symptoms, my mother assumed I had a stomach virus. She had me eat stomach virus-friendly food for about a week. After a week of no improvement, she took me to our family doctor. He asked me questions about specific symptoms, but I fudged the truth. He drew some blood and said he would call with the results.

The next morning, Presidents Day, I was getting ready for school when the doctor called. I answered the phone, and he asked to speak to my mother. I watched my mother turn white and start shaking. She hung up and said we need to go to the hospital right now.

At the hospital, they ran a bunch of tests and admitted me. I remember crying because I was certain I would be diagnosed with colon cancer. I had very little medical knowledge at that point, and I had heard a story of someone who passed away from colon cancer.

I received two bags of blood and a whole cocktail of other medications. The next morning, I had a sigmoidoscopy. I remember witnessing some commotion in the procedure room and not knowing what was going on. The doctor said something about needing batteries for his beeper. Later, my mother admitted that it was a tactic to delay things without alarming me, since my heart rate was dangerously high and it was unsafe for me to go under anesthesia that way. Eventually, my heart rate slowed down and I went to sleep. The doctor only managed to get in a little bit because I was too inflamed. I remember waking up in the procedure room, and the doctor showed me the pictures. I didn’t know what a colon was supposed to look like, but it was very clear to me that something was VERY wrong. My colon looked like a war zone. The doctor diagnosed me with Ulcerative Colitis. She explained that it’s a disease with no cure and that I will live with this for the rest of my life.

I remember feeling completely defeated. I had never heard of Ulcerative Colitis before, and I thought that for the rest of my life I would be that sick person who needs to be wheeled around in a wheelchair, would never be able to get married, and certainly won’t be able to have children.

I then started on this brand-new journey of chronic illness. It was an extremely bumpy road. For the next few months, I was in and out of the hospital and ultimately switched to a new GI - a pediatric GI - because the GI I had been seeing felt that my case needed to be handled by someone with more specific expertise.

My pediatric GI was excellent. He rediagnosed me with Crohn’s Disease, and slowly, slowly, I started making progress. I did not return to school that year, but the following year - my senior year - I managed to go part-time, with lots of flexibility. Some days I would go late and leave early, some days I would go on time and just leave early, and when I felt it necessary, I just stayed home. My school was very flexible, and they allowed me to come to school simply for the social aspect. I rarely took any tests, and was not held responsible for any homework. I only focused on my health that year. I did not graduate from high school with a diploma. Initially, it bothered me, but now I understand that it was all meant to be part of my journey.

As a teenager facing an IBD diagnosis, what were your biggest fears about the future? How did you imagine your life would unfold?

My biggest fears were surrounding my family life. When I received my diagnosis, I suddenly felt a strong desire to one day get married and have children. I think most 16-year-olds don’t think about that, but when you’re faced with a life-threatening situation, it forces you to think about life from a different lens.

I did have hope, specifically about getting married. I remember thinking that whoever I am meant to marry will not be taken from me because of my diagnosis. And I think I channeled my fear of not having children into a stronger desire to, yes, make that happen!

When I received my diagnosis and heard that it’s final and will remain with me for the rest of my life, I felt like a giant wall went up in front of me. I did not know what was behind that wall, and it felt like I would never climb over that wall. I couldn’t imagine how my life would unfold.

Now that you're an adult, how has your perspective on living with IBD changed compared to when you were first diagnosed as a teenager?

As an adult, 13 years post-diagnosis, I still sometimes deal with the grief of having a lifelong diagnosis. I’ve come to realize that it’s part of it. However, I’ve realized that for the most part, I can live a normal life! My process may look different than the average person, but what’s average anyway? Every person has a story, whether it’s with their health or something else. Our job is to grow through what we’re given and become better people.

I realized that having IBD is my superpower in many ways as well! I’ve connected with people I would’ve never met otherwise, I’ve helped people, and I’ve also accomplished things I would’ve never accomplished had I not gotten sick.

I also have a very unique perspective on life that most people don’t develop until way later in life. I appreciate all the little things, and it feels amazing.

You mentioned that you thought having children might not be possible. Can you share what that journey was like and how it felt to overcome that fear?

In my community, it is common to start trying for pregnancy soon after getting married. We knew we wanted to wait a few months so we could settle into our new routine. After about 9 months, we felt ready to start trying, and I stopped the birth control I was on. After a very short time, my symptoms started flaring, and my doctor advised me to start birth control again until we can get things under control.

I then experienced one health issue after another, and it felt like I would never reach the point of coming off birth control again. That fear I had felt at the time of my diagnosis came to the surface again. I was enjoying married life, though, so I wasn’t too upset about having the time without any children. I focused on getting my health under control, and my husband and I did whatever we could to prepare for parenthood. We learned a lot about healthy parenting, and now, looking back, we see how it came to our advantage.

Thankfully, after about a year, my doctor gave me the go-ahead to stop the birth control. A few months later, on our second wedding anniversary, I got pregnant with my first baby.

When I was around 10 weeks pregnant, my symptoms flared. We were limited with treatment options due to pregnancy, so we mostly just monitored symptoms.

When I was around 28 weeks pregnant, my GI decided to test for c-diff. Unfortunately, that came back positive. It was pretty scary. However, I was seeing a Maternal Fetal Medicine doctor who worked together with my GI, and she kept me calm. I started a round of Vancomycin, and while the c-diff was cleared, my IBD flared pretty badly.

I had a scheduled C-section due to my medical history. I can remember waiting to be taken to the OR and constantly running to the bathroom in pain.

When I heard my daughter’s first cry, I cried too. I lost it. All the built-up emotions came pouring out. I was so relieved that she was here and healthy. I couldn’t believe that my dream of becoming a mother was now a reality.

After my daughter was born, my symptoms only got worse. To make a long story short, I switched to a new biologic, and that got me into deep remission. Soon after that, we started trying for a second baby. Well, that second baby became second and third. We found out I was having twins.

I was nervous that the pregnancy would be worse than my first, since twin pregnancies come with more risks. However, this pregnancy was very smooth, and I remained in remission throughout the pregnancy and after.

How do you balance managing IBD with motherhood, and what support systems have helped you?

It’s a challenge, and things keep changing and shifting as my kids grow older. I prioritize my health because I know the consequences of the alternative. I can only be a good mother if I am healthy and strong. Also, I am teaching my kids that it is important to take care of their needs.

I find it very helpful to talk to other moms in similar situations, as well as “healthy” moms. I realize that many of my challenges are just regular mom challenges, and the ones that are affected by my IBD, at least I don’t feel alone.

Did you encounter any challenges when transitioning from pediatric to adult care? If so, how did you adapt?

I was extremely sad to leave my pediatric GI. That office felt like home, and the staff felt like family to me.

My pediatric GI knew me better than I knew myself, so I was extremely nervous about transitioning to the adult world. I’ll be honest, it has been a challenge, and still is. I find that I constantly need to advocate for myself, and I need to take care of everything on my own.

I was forced to become independent at age 17 after my parents separated, so that prepared me for the transition as much as possible. I am very fortunate to have amazing medical professionals who have continued to support me, and I just try my best!

How do you handle difficult days, both physically and emotionally? Do you have any strategies that help you push through?

I allow myself to just be. Physically, I allow myself to rest without any guilt. Emotionally, I’ve learned that it’s important to ride the waves.

Experience has taught me that all hard times pass, so it’s ok to not be ok at times.

What advice would you give to teenagers with IBD who are worried about their future? Is there anything you wish you had known or been told when you were first diagnosed?

Learn who you are as a person, separate from your diagnosis. I guarantee you have so much to offer the world.

With that being said, I would say the following:

• Someone amazing will still want to marry you. If someone judges you for your condition, then that is your sign that this person isn’t worthy. A truly good person will love you FOR your condition.
• Having kids is possible for most! Seek out the best care, and make it happen.
• You will enjoy life again! Tough times don’t last. You WILL come out stronger and better.
• You will get stronger. You will not be sickly and weak for the rest of your life. True, you will always have your ups and downs, but focus on the ups.
• Don’t be afraid of sharing your journey with others! Again, if somebody judges you for it, then it’s a sign of who they are and not you. Find the people who care and will be inspired by you.

What message do you hope to share with the IBD community through your story?

Every person goes through challenges at some point in their life. The more challenges you endure, the more capable you are of growing. The goal is not to avoid those challenges, but to seek growth through them. Find the glimmers in the dark and hold onto those.

Hindy once feared that her diagnosis would define her future, but instead, it became the foundation for a life grounded in strength, connection, and purpose. Her journey is a powerful reminder that while chronic illness can cast shadows of uncertainty, it cannot take away our ability to live fully, love deeply, and grow in ways we never imagined.

For any young adult facing an IBD diagnosis, or anyone walking alongside them, Hindy’s story offers hope, perspective, and reassurance that a meaningful, joyful life is still very much possible. The path may look different, but it can still lead somewhere beautiful.

Thank you, Hindy, for opening your heart and sharing your story so generously. Your voice is a gift to the IBD community.

If you’d like to share your own IBD journey, we’d love to hear from you! Please feel free to reach out using the email address below. Your story matters, and it has the power to inspire others just like Hindy’s has. And as always, stay strong IBD Warrior families!