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Importance of Sharing Your Story

I recently had the incredible opportunity to sit on an IBD panel at the University of Wisconsin, Madison. I wasn't really nervous prior to that morning because I did a lot of public speaking in my previous career, and have sat on forums before. It wasn't until I walked into the ginormous lecture hall filled with pre-med students, and saw the microphone, that I felt a rush adrenaline course through my veins.

To say that I was excited was an understatement. I was PUMPED UP!!! I am incredibly passionate about creating awareness surrounding IBD. There currently is no cure, so sharing my story to as many people as possible starts the conversation. This provides a platform for educating others, and helping people understand Crohn's disease. This in turn, helps propel momentum to increase fundraising efforts which aids in finding a cure.

As I looked out into the sea of students, I felt hope. Hope for a cure. Hope for research. Hope for quality of life. These impressionable minds are the future, and my health might lie in their hands someday. These were future doctors, some of whom would be future gastroenterologists. Young, eager minds ready to listen, with eyes all focused on me. I was grateful to have their immediate, and undivided attention. The other panel members and I went over the allotted 50 minutes. We had such an enthralling, engaging, and informative conversation that the professor didn't want to cut it short.

Here are some of the Q & A from our session, and specifically questions that I answered:

  1. How does having Crohn's disease impact your relationships? When I was first diagnosed, I was 28 (even though I had it when I was much younger). There wasn't a lot of information on Crohn's disease at that time. I didn't even understand the disease, let alone my friends. I lost a lot of friends due to a lack of understanding. I remember having to cancel plans a lot, and making up lame excuses as to why I couldn't make it. I remember feeling so bad for letting people down, but in my early days of my disease I was embarrassed by this sometimes debilitating condition. Now that I am older, I am more comfortable in my own skin, and wear my disease like a badge of honor. The friends I have now, and my family are so incredibly supportive, and well educated on Crohn's disease, so they're the people I choose to surround myself with.

  2. How were you able to have children with Crohn's disease? The idea that someone with Crohn's can't have children is a myth, and let me debunk it right now. It's important to be in remission while trying to conceive, but please know that your chances of having kids are just as good as someone who doesn't have Crohn's. I should know. I have three beautiful and healthy children who all were almost 9lb. babies, except Lucy (who was 7lb. 10oz.). I was actually quite healthy while pregnant, and never felt better, which suggests a hormonal component to the inner workings of Crohn's disease.

  3. What's your medication treatment? I am currently taking bi-weekly Humira injections. Humira is a biologic, and immunosuppressant used to treat inflammation.

  4. How do you know when you're in a flare? I have intense abdominal cramping, and lower back pain. My joints usually ache as well. I will have 10-15 stools per day. My stools will have blood, and mucus. I have internal and external hemorrhoids when I am flaring, as well as when I'm not flaring, so they're constant, and chronic.

  5. Do you worry about your children having Crohn's disease? When I was first diagnosed, I worried a lot about the impact of having a disease would have, and whether or not my children would someday also have the disease was one of my major concerns. Now that I'm more educated, I know that my children only have an 8% chance of having Crohn's disease. If my husband also had Crohn's disease, their chances would go up significantly. I believe the number is 35%.

  6. Do you tell your employer you have Crohn's disease? I tell everyone I have Crohn's disease. I believe in being fully transparent from the beginning. This prevents any misunderstanding or confusion from happening.

  7. What's the most difficult part about having Crohn's disease? Knowing that it's a progressive disease. I try as much as possible to stay in the moment, but sometimes I can't help but think about what my future will look like.

  8. How does Crohn's disease impact your day-to-day? There are good days and bad days, but I don't let my having Crohn's dictate my life. I feel I am stronger because of my disease. I have an incredible amount of patience, strength, resilience and appreciation for life that Crohn's disease has given me.

  9. Have you had to take steroids, and how has it affected you? Yes, unfortunately. It's a necessary evil because it quells symptoms, but it literally affects every organ in your body. For me, I suffered from ocular hypertension, insomnia, hair loss, anxiety/paranoia and moon face.

  10. What qualities are important to you when looking for a doctor? I have been very fortunate to have the same gastroenterologist now that diagnosed me back in 2008. It took a few doctors prior to him before I settled on this amazing doc. He's incredibly knowledgeable on Crohn's disease, has a wonderful bed side manner, and he LISTENS. Did you get that last part? He LISTENS. While it's obviously important to have a medical perspective, it's crucial to have a doctor that wants to hear YOU. Someone who wants to hear your story, and your thoughts it's so important. Treatment is a collective and integrative process. You need someone who wants your insight when deciding your care management. Your story matters, and you want someone who wholeheartedly believes that.

If you're given the opportunity to share your story, please do so. Inquiring minds want to know your journey. It's refreshing to speak with young, educated people willing to listen. The more we share, the more we know, and the closer we get to finding a cure. Let's continue the conversation, and find a cure for Crohn's together. One final note. As an avid Badger basketball fan, I would be remiss if I didn't say, "GO BADGERS!!!" Good luck in the Big 10 Tournament this weekend!

Education is the most powerful weapon which you can use to change the world

- Nelson Mandela

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14 mar

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