The Chronic Diaries: Lexi’s Journey with Crohn’s Disease
Where are you based?
I am based in the United States in Atlanta, Georgia.
What chronic condition(s) do you have? Please briefly describe what they are?
I have Crohn’s disease (a type of inflammatory bowel disease, also known as IBD). Having Crohn’s disease means that your immune system mistakenly attacks any part of the gastrointestinal tract, causing inflammation. In my case, my Crohn’s causes inflammation at the end of my small intestine and beginning of my large intestine, also known as the terminal ileum.
What symptoms did you deal with before you were diagnosed?
Before my diagnosis, I was having diarrhea several times a day with blood, rapid unintentional weight loss, joint pain, loss of appetite, and abdominal pain and cramping.
How were you diagnosed? What was your journey to diagnosis?
Although I don’t remember the exact dates, I was diagnosed with Crohn’s disease in June of last year through bloodwork and by a capsule endoscopy (a procedure that involves swallowing a vitamin-sized capsule that contains a camera to take thousands of pictures of my digestive tract). Earlier in the month I had a colonoscopy, but since my Crohn’s was in my small intestine, the colonoscope wasn’t able to reach that far into the area.
Did this journey have an impact on your daily life? Eg, dropping out of college, quitting your job/getting fired? Etc.
I began experiencing symptoms (which I now know was Crohn’s) in December of 2019. I tried over-the-counter medicines, changing my diet, and I did my best to reduce my stress levels, thinking my symptoms would get better. After trying all of these things for six months and not seeing much improvement, I knew it was time to seek help. As a freshman college student, I had to drop college courses I had registered to take since I felt so sick. I was very disappointed about that, especially since I didn’t even find out why I was so sick yet.
Are you on any medications?
To help manage my Crohn’s, I am on Infliximab (also known as Remicade). It is a type of medication that blocks a type of protein in my immune system that causes inflammation in my gastrointestinal tract. This medication is given as an IV infusion once every 6-8 weeks for about 3 hours.
What side effects do you encounter, if any?
After a Remicade infusion is complete, I feel extremely tired. I come home and take a long nap, and by the next day I feel completely fine.
What symptoms of your illness do you deal with on a daily basis (even when on medications)? How do you deal with these?
Even though my medication has been helping tremendously, I still experience some symptoms here and there. These symptoms include nausea, abdominal cramps, and joint pain. To ease nausea, sucking on peppermint candy helps, as well as deep breathing exercises. For abdominal cramps and joint pain, taking warm baths helps me the most.
What occupation do you have? How does your illness effect your job/employment?
As a college student with Crohn’s, it’s difficult at times to manage my chronic illness and schoolwork at the same time. I have had flare-ups of my Crohn’s during classes and final exams before, and I had to push through those times. I have accommodations in place, such as receiving extended time on tests and assignments, having unlimited access to the bathroom, and excused tardiness or absence due to my chronic illness, just to name a few.
How does your illness impact you mentally?
With having Crohn’s, I have good days and bad days when it comes to my mental health. I’m not going to lie, sometimes I cry when things get rough, and I’ve questioned “Why me?” many times. I am grateful beyond words for my support system of my family, friends, and my boyfriend. They are loving, comforting, and always willing to hear me vent when I’m upset. Other days, I feel empowered and much stronger mentally from managing a chronic illness.
How do you keep motivated dealing with your chronic condition in your daily life?
Staying motivated with Crohn’s disease is difficult some days. To help get me through, I have a wonderful support system of my family, friends, and boyfriend. I also listen to motivational songs such as “Fight Song” by Rachel Platten and “I Lived” by OneRepublic.
Is there any advice you would like to give to people who are on their chronic illness journey?
When you have a chronic illness, you will have good days and bad days, when it comes to your physical and mental health. I’ve learned to make the most of the days that you are doing well. Go out on a drive, go for a walk, spend time with those who you love, or take part in anything that makes you happy. On the bad days, creating a gratitude list helps me. At the same time, remember that it’s okay and healthy to express sadness, anger, or anxiety. It also helps to remember that you are not your chronic illness.
How do you encounter people having your illness? Do people understand? Are they ignorant? What level of difficulty do you have with this, if at all?
I haven’t met anyone who has Crohn’s disease like me, so I do feel alone at times. My family, friends, and boyfriend are very supportive. However, they don’t quite understand everything about my chronic illness and how it affects me day-to-day. I once had a “friend” who told me she wishes she had Crohn’s disease so she could lose weight like I did. I was extremely upset by that because I didn’t even try to lose weight, and weight loss isn’t just a symptom of Crohn’s disease. It goes way beyond that, and it’s very difficult.
Is there anything you want to say to these people? Or the general public who do not have a chronic illness?
I would love to see my family, friends, and boyfriend to be more educated about Crohn’s disease, so they will be able to understand more, or at least have an idea of what I am talking about. To those who don’t have a chronic illness, be grateful for your health each day, and appreciate that you don’t need to worry about how you might feel from one day to the next. Just because someone doesn’t “look sick” doesn’t mean that they don’t struggle with a chronic illness inside. Always be kind, and please don’t judge.
Chronic Exposure Network
