Crohn’s disease: “The closer we get to educating everyone, the sooner we will find a cure.”
Published Aug 17, 2022 • By Berthe Nkok
As a child, Suzy was sick a lot and was put on several antibiotics. It might have affected her gut flora and microbiome, causing her to be diagnosed with Crohn’s disease several years later. Shortly after, she started her blog, Crohnie Mommy, to deal with and process her condition.
Discover her story below!
Hello Suzy, thank you for agreeing to talk to Carenity.
First of all, could you tell us more about yourself?
I turned 43 on July 31st, am married to my wonderful husband Ryan (he’s a Bear’s fan, but I’ll let that slide) and we have 3 AMAZING children. Lucy will be 7 in just a few weeks, Alice is 4 1/2 and Guy is our very special Leap Year kiddo. He’s 2, but technically won’t be 2 for another four years, ha!
My family is my heart. We do everything together and I wouldn’t have it any other way. In the summer you will find us in our backyard oasis which includes a new pool (pandemic project). I also love traveling, writing, reading, being in nature and RUNNING. I have done several half marathons and 4 marathons. I have my eyes set on the Chicago Marathon 2023 where I plan on raising funds for the Crohn’s and Colitis Foundation.
Photo courtesy of Suzy
In 2008 you were diagnosed with Crohn’s disease. What were the first symptoms? How many doctors did you see and what tests did you have to take?
Yes, I was diagnosed with Crohn’s disease in 2008, but feel I had it since I was a kid. I was sick a lot and was put on several antibiotics. I feel that messed with my gut flora and microbiome. I also had a different relationship with food than most kids my age. My mom would pack my lunch with just plain white noodles and a banana. I remember having several trips to the bathroom in high school and being so embarrassed. I would watch the floor intensely to make sure all the feet had left the stalls.
Years went by and I just dealt with symptoms. It wasn’t until it started really having a negative impact on my day-to-day that I sought help. It took me a little bit to find the right doctor. I was living in Chicago at the time, and although I saw a highly recommended gastroenterologist at Northwestern, he didn’t take me seriously. It wasn’t until I moved to Madison that I found my forever GI.
I was having several loosed stools, blood in my stools, abdominal cramps and I was losing weight quickly. Overall, I looked like the walking dead. My GI ordered labs which included a complete blood count (CBC) panel, gastrointestinal pathogen panel and calprotectin. I was also scheduled for a colonoscopy right away. These tests all revealed inflammation in my body, and the colonoscopy was the confirmation he needed to diagnose me with Crohn’s disease. My colon was covered in ulcers.
How were you told about the diagnosis and how did you feel?
I still remember clear as day when my doctor revealed my diagnosis. My mom was by my side, I turned to her with teary eyes and said, “what’s Crohn’s disease?”. Neither of us had ever heard of this disease, so I looked back at my GI pleading for answers. He went onto explain that this was a disease of the digestive tract, which was causing all the symptoms I had been experiencing over the years. He sent me home with a thick packet of paper describing what I had, and a prescription for Asocol. I felt incredibly scared and alone, but a small part of me was relieved. I finally had an answer for all the pain and suffering I was going through.
How did the illness evolve over the years? What were your treatments? Does it help?
Turns out I was allergic to my very first medication. It made me throw up, hair fall out, and other unpleasant side effects. I was immediately switched to Balsalazide. This medication had a quick impact on my symptoms and how I felt. It lessened my diarrhea and improved how I felt immensely. Over the years, I had a few flares that required hospitalized and intravenous prednisone treatment, as well as prednisone oral treatment at home. Prednisone is sometimes a necessary evil, but it can cause several horrible side effects, many of which I experienced.
This past year I had my worst flare ever and was yet again hospitalized for calprotectin levels upwards of 8,000 mcg/g. I was faced with a life-or-death situation, and a medication switch was required. My current medicine was no longer cutting it. Humira had been on the table before, but I fought like hell NOT to start it. It wasn’t until I accepted the severity of my disease that I switched to Humira injections. This biologic gave me my life back.
What impact has the disease had on your daily life? How do people around you view the disease? Are they understanding and comforting? Do you feel free and comfortable to talk about it?
Obviously, Crohn’s disease has had a big impact on my life. It’s a serious, chronic and lifelong condition. My husband and kids are very aware of my disease and are a huge support for me. They know when mommy is sick, and everyone pitches in until I am better. My parents and in-laws have been incredibly helpful during times when I have been hospitalized. Those are an all-hands-on deck situation, and they don’t blink an eye when called upon.
There are still people out there who flat out don’t understand IBD. It’s no fault of theirs, rather, lack of education on the topic. This is one of the reasons I am so passionate about creating awareness. The closer we get to educating everyone, the sooner we will find a cure. Knowledge is power, and power opens the door for opportunity to greatness!
A few years later, you decided to launch your blog “Crohnie Mommy”. Why did you make this choice? What messages do you want to convey to your readers?
Initially, I started my blog, Crohnie Mommy, as a way to deal with and process my disease. I found writing to be very healing. What happened next was incredible! I started hearing from readers all around the world. We started sharing our stories, supporting one another, learning from each other and it was at that moment I became part of the IBD community. I realized there was so much more I could be doing. I had a voice, and I wanted to be heard. I needed to be heard for myself, and the more than 3.1 million warriors who suffer from IBD. My path to advocacy was created, and I started partnering with other organizations to create awareness for IBD. If you’re out there and you were recently diagnosed, struggling with your disease and need support, you’re not alone.
On IBD World Day 2022, you mentioned reaching remission with a treatment based on turmeric to target the gut. Which treatment was it? How does it work?
During my most recent flare, I had been on prednisone for a very long time. Prednisone is meant to be short term, but I had difficulties tapering off. Through my blog, I was contacted by an organization in Israel called Evinature. A team of genius gastroenterologists developed a gut specific turmeric treatment (Cura and QD1). By starting this treatment, I was able to successfully come off prednisone and start my Humira injections. I want to stress that before starting any new treatment, consult your gastroenterologist. Just because it works for me, doesn’t mean you’ll have the same outcome. Everyone’s disease is very different.
What are your plans for the future?
My plans are to continue to advocate on behalf of fellow IBD warriors. I have found my passion in life, and it gives me no greater pleasure than to try and help others. Rather than feel sorry for myself and get caught up in the heaviness that this disease can bring, I will use the tools that Crohn’s has given me to share my story, connect with others and aid in the effort to find a cure.
Finally, what advice would you give to Carenity members who, like you, are affected by Crohn’s disease or have a loved one affected?
Whether you have recently been diagnosed, know someone affected with Crohn’s disease, or have had it for years, I encourage you to reach out to the IBD Community. There is so much support, learning and research opportunities available, and several ways in which you can get involved.
Any last words?
You’re not alone! Crohn’s disease can be very isolating at times; however, it has taught me many things that I wouldn’t necessarily know or possess if I didn’t have it. I have a greater appreciation for life, and I try and live each and every day to the fullest. You never know what life will throw your way. It’s how you choose to handle the challenges that make all the difference.
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