Wow! I am still processing the whirlwind of a day that was Take Steps Madison. I have enjoyed reflecting today on how grateful I am for all of the people who supported me, both at the event, and from afar. It was an experience I will cherish forever, and think of fondly for years to come. Emotions were running high the entire day, and I think it will take a long time before I fully wrap my head around all of the beauty that was unveiled. A few people have asked me for my speech, so what better way to do that, then a blog post. Love and hugs to all. Here you go:
Honored Hero Speech:
Thank you to the Crohn’s and Colitis Foundation for this very special honor. Words cannot express what this means to me. When I look out into the crowd I see a lot of familiar faces, so bare with me here as I try to get through this. Raise your hand if you have IBD. Raise your hand if you’re a caretaker of someone who has IBD. Now, raise your hand if you’re here today to support someone who has IBD. Wow, I believe that’s everyone. We’re all connected. We all have our journeys. Each and every one of us has a journey that is special and unique. I would like to share now a bit of my journey with all of you.
I was diagnosed with Crohn’s disease in 2008, but I believe I’ve had it since I was a young child. I started noticing that I used the bathroom more frequently than other kids at school. I was an athlete, so at first I thought it was just nerves, but the loose stools started happening even when there wasn’t a track meet, tennis match or a basketball game. I remember waiting in the bathroom stalls until everyone was gone. Middle and high school are such impressionable years, and the last thing I wanted to be remembered by was the girl who pooped a lot. I learned quickly that if I ate less, there would be less pain, and it would be much easier on the back end. Although I was exhausted, and fatigued, I was able to mask the pain, and push through.
Several years passed, and I couldn’t hide
anymore. Then came the blood in my stools and debilitating cramps. I was finally referred to a gastroenterologist, and a colonoscopy was performed. There I sat, bleary eyed from post procedure anesthesia, and the gastroenterologist (who is still my GI doctor today) told my mother and I that my colon was inflamed and covered in ulcers. The next part he said had to be told to me a few times. I had Crohn’s disease. I still remember like it was yesterday. My world stood still, my mom and I looked at each other and said, “what is Crohn’s disease?” We were handed a packet of paper, which included pictures of my colon, and other interesting diagrams, a prescription and I went home. Turns out I was allergic to my first medicine. My hair fell out, and the vomiting started. Long story short, it took several medications to figure out what would keep my symptoms at bay. We finally found one, and I remained on that for 14 years.
This period in my life was filled with multiple hospital stays, IV steroid blasts and extreme denial. I mean I could still run a full marathon in under 4 hours, which included several porta potty trips and blood running down my leg. I was lost, scared and felt so alone. I began to write, and put my thoughts down. This was my therapy. In 2019, I created Crohnie Mommy, a blog geared towards mothers who have IBD. What happened next was a beautiful thing. I connected with people all over the world who had IBD. My second family was born. We shared our journeys, offered support, and a safe platform was created. There were so many others out there like me. I began to partner with organizations around the globe to share my story, serve as an IBD advocate and create awareness. As stories about receiving diagnoses of glaucoma, arthritis, cdiff and my love/hate relationship with prednisone, poured out of me, so did the tears. Followed by an overwhelming sense of peace and acceptance. Through writing, and volunteering with the Crohn’s and Colitis Foundation, I found HOPE, and purpose.
It was this hope that got me through the most difficult time in my life. I was hospitalized last year with a very alarming calprotectin level. Calprotectin is an inflammation marker that is checked often in IBD patients. To give you an example, normal is anything under 49. My levels were upwards of 8,000. I was facing total removal of my colon and rectum, and my chances of getting colon cancer would go up significantly. I was very opposed to biologics, mostly because I knew it would further suppress my immune system, but the doctor on call looked at me and said, “Suzy, this is a pivotal point in your disease. Do you want to watch your children grow up?” That’s all I needed to hear. Something clicked. I began to see things clearer than ever before. Those who know me, know I am a mom first and foremost.
I switched to bi-weekly Humira injections as soon as I could, and never looked back. I have now been in remission for just over one year. My GI doctor would’ve been here today, but he’s doing what he does best. taking names and saving lives, one colon at a time. However, Dr. Saha is here today to represent all of the excellent doctors at UW. Dr. Saha treated me while I was pregnant, and I would trust her as well as the rest of the GI team to handle my case at anytime. They’re all phenomenal, and the care you receive at UW is hands down the best, so thank you Dr. Saha and your team.
When some people discover I have Crohn’s disease, their response is, I’m sorry. Well, I’m not sorry. This disease has taught so much. Acceptance, resillience, and perserverance. Also, I have no qualms about public restrooms, porta potties, bushes, shorts, you name it, I’ve used it. I have a newfound appreciation for life, and all of the beautiful moments it has to offer. I enjoy living in the present and not looking too far ahead. I am a fighter, I am an IBD Warrior. You’re all IBD Warriors with your own journeys. Be heard, not only seen. IBD is thought of as an invisible disease. We might look fine on the outside, and be able to function at our normal daily activities, but on the inside, we’re fighting a fierce battle. Well, let's change the narrative shall we. I am here to say that I see each and every one of you. It’s time to make IBD Visible!
I would be remiss if I didn’t thank my village, my people, Team Crohnie Mommy. To my mom who I believe I get my fierceness from, she knew something was wrong with me, and took me to endless doctor appointments, and was the advocate I couldn’t be. Dad, thank you for your wisdom and advice over the years. Amidst struggle, you’re able to offer the voice of reason, and just listen. Listening is so powerful. Anna, my sister, and best friend. We’ve laughed and cried so many times throughout the years. You have so much empathy, and are so nurturing. You’re there for me, no matter what. To my in-laws, there you are. They’re willing to drop everything to come to our aid, and watch our kiddos. No questions asked, they’re always in my corner. To my kiddos. You’re my motivation, every, single, day. Keep being the beautiful tiny humans you are.
Friends and family, both new and old, thank you for your generous donations. Team Crohnie has crushed it, and without you this wouldn’t be possible. Then there’s Ryan, my husband. You have seen me at my lowest point. I met Ryan over 25 years ago when we were in college together. He had no clue what he was getting into. Over the years, he has witnessed me in excruciating pain, endured way too many poop conversations, and watched his wife transform into a shell of a person. He has had to bare the brunt of my roid rage, moon face conversations and which salon has the best hair extensions to cover up my patchy scalp, so others wouldn’t have to. So many times no one knew what was actually going on with my health because you, Ryan. You are my protector, my caretaker. When I was pregnant with our 3rd kiddo, Guy (hey buddy), I was in a pretty horrible flare the first trimester, so I was prescribed nightly medical enemas for one month. Ryan offered to administer the enema for me. Despite this generous proposition, I respectfully declined, and chose to lay there like a beached whale, struggling to do it myself. Now that’s love people.
I also want to mention a very special father son duo I see here today, Luke and Todd Eriksund. I had the incredible privilege to be on Team Wisconsin with these two for IBD Day on the Hill. Like me, Luke also has Crohn’s disease. Todd is Luke’s father and caretaker. The love between the two of them was apparent when I first virtually met them, and I know how much it means to Luke to have his father’s support, as my mother was my advocate when I was younger. Luke is the honored here for Take Steps Green Bay. Luke, you’re an amazing role model, and I’m so proud of you. You’ve been through so much, at such a young age, and you’re so strong buddy. Keep fighting.
Lastly, but certainly not least, I want to thank the Crohn’s and Colitis Foundation. Makenzie, you’re a ray of sunshine. Your energy is so infectious, and feel very lucky to volunteer for you, and call you my friend. You and your team work tirelessly to help facilitate funding and research efforts. You’ve save my life on more than one occasion. There are incredible research projects in the pipeline to discover new and improved medications, and I have no doubt that there will be a cure someday. If you’ve recently been diagnosed, or are a veteran IBD Warrior, there is something for all. I encourage you to reach out to the Crohn’s and Colitis Foundation, share your journey and see how you can get involved.
"No matter where you are on your journey, that's exactly where you need to be. The next road is always ahead."