Living With Crohn’s: Mai’s Story
Mai is a strong young woman living with Crohn’s disease since the age of 9, but that does not stop her from pursuing her passions, including dance. In this post, Mai shares her Crohn’s experience, as well as the what advice she has for those with the condition and to their caregivers.
Tell us about yourself:
My name is Mai, I am a sophomore in highschool. Although high school has been difficult for me, I am enjoying it so far and am doing well with balancing my school work and lifestyle. I strive for good grades and I get them. I also dance, it is a huge part of my life. I do competitions, and take classes every day of the week. School and dance take up most of my time and it can be stressful to juggle both. This is where my Crohn’s comes in – when I get stressed my stomach begins to hurt so it is sometimes a challenge. However, I manage to do everything I can to maintain a more than normal life.
School and dance take up most of my time; it can be stressful to juggle both. That is where my Crohn’s comes in.
How did you find out you have Crohn’s?
I found out I had Crohn’s at the age of nine. I was in third grade and started having high fevers and abnormal stomach aches. My parents decided to take me to the hospital where I ended up staying for around a month. The doctors did a bunch of testing and finally came to the conclusion that I had Crohn’s disease.
How has Crohn’s Disease impacted you and your family life?
Crohn’s had a tremendous impact on my life. It changed my diet completely; it changed the feeling I got when I went to certain places. Suddenly, I have to make sure I know where the restroom is and make myself feel comfortable turning down food that I can’t eat and having to explain myself. It also changed the feeling I get when I go to school. I felt a bit uncomfortable at first. I was scared that I would have an attack and need to use the bathroom in the middle of class or that the teacher wouldn’t let me out. I was also afraid that people would judge me about the fact that I couldn’t eat certain foods. Up until now, I have to take pills and get injected with a shot every month which my dad gives me. Crohn’s also impacted my family for good. It began as a burden to our lives, we all had to learn how to get the hang of this type of lifestyle. Eventually, we adjusted. Today, my entire family lives a healthy lifestyle. My mom cooks the way I can eat and everyone enjoys it. My mom also became very knowledgeable about the disease which helped me greatly.
Crohn’s had a tremendous impact on my life. It changed my diet completely and my life experiences.
What advice would you give to someone who just found out they have Crohn’s?
Stick by your diet. It will help you and make your life a million times easier. There were points where I didn’t stick by it and ate foods I wasn’t supposed to and over time it caught up to me and I was stuck in the hospital for over a month for the second time. I missed so many events sitting in the hospital instead of being with my friends, and that was not fun for a 7th grader. I also would say to try not to argue with your parents about what you can and can’t eat because they truly know what is best for you. That is a big mistake I made. I fought my mom so much about what I can eat because this disease is so involved with food. It always stuck in my mind that I just couldn’t eat things I really wanted to. After 6 years with Crohn’s, I finally agree with my mom and listen to what she has to say because the anger and stress agitated my stomach and was just not worth it. Although you will make a lot of mistakes, you will learn from every single one of them over time just like I am doing.
What advice would you give to the person taking care of you?
Listen to what the doctor says and do not take it to the extreme. I know that my parents do this because they are worried about me but it makes it harder on me. Just be patient, and try to understand. Overall I think my parents, who are taking care of me, did an amazing job and provide me with everything I need- from the right food and medications to the support I need at times.