This week we are fortunate to learn about living with Crohns from our reader and featured writer, Alexa Federico.
I learned that my body is not fighting against me, it is fighting for me.– Alexa Federico
My diagnosis: Crohns disease
Crohn’s disease (form of IBD) I was young, 12 years old, and I was getting stomach aches all the time, losing weight, fatigue, and more. I was always cold and did not feel like myself. My parents saw something was wrong before I did.
What were your symptoms?
My Crohn’s symptoms were Fatigue, weight loss, diarrhea, joint pain, mouth sores, nausea/vomiting, and abdominal pain. I was diagnosed in middle school when I was 12 years old.
I explain Crohn’s disease as an autoimmune disease that expresses itself in the digestive tract and beyond, and the symptoms are just messages that something is wrong. The root of the imbalance is chronic inflammation.
How did you know it was something serious?
When I started experiencing changes in my health I was getting a lot of abdominal pain (especially after eating), losing weight, nausea, vomiting, diarrhea. I was always cold and tired. I had mouth sores and joint pain in my knees. I was only 12 years old without any major life stressors, traumas, or serious illnesses so far. My parents could see the changes in me more clearer than I could. I repeatedly went to my pediatrician’s office, saw different doctors, and yet I was sent home with the idea that it everything was fine. I was just “skinny.”
They had no explanation for me or my parents, nor did they choose to do any investigative work involving any kinds of testing. Finally, one pediatrician suspected Crohn’s disease and referred me to a pediatric gastroenterologist. He recommended I get admitted immediately. That was the ~10 day hospital stay in which I was diagnosed.
For that first year I followed their recommendations. I was taking Prednisone for short term relief and prescribed Pentasa. (They had also recommend biologic medications or surgery, neither of which my parents wanted to try right away, and at my young age). I was give little to no dietary advice, but I did what they said. Within 14-16 months I had lost the weight I gained back and was admitted two more times.
My parents were my advocates. They kept asking about diet choices, in which the doctors continued to quiet them. My parents could not understand how doctors could say that food had no influence over how I was feeling, even though this is a gastrointestinal disease. My luck change when I was connected to a holistically-minded doctor. Upon seeing him, radically changing my diet, adding in supplements my body was deprived of, I started turning around in a couple of weeks.
That doctor and lifestyle changed my life. I continue to follow it today. In the beginning (as a stubborn pre-teen/teen) I followed this lifestyle begrudgingly. I wanted to eat whatever I wanted like other kids, but I knew it was helpful me to feel well, and that was more important. By college, I was starting to get interested in why my diet was affecting my disease activity. I started to get grateful I knew this information and that I had tools to help me feel well.
In college I started an Instagram account. It was not under “Girl in Healing” and I did not show my face. It was a way to showcase what I ate and how it helped me heal. In time, I decided to make it more personal, and a couple years in I started my website, girlinhealing.com, to showcase recipes and information on living with IBD. I felt so compelled to shout the “secrets” I knew from the rooftops. The secrets that respected doctors told me were false, but I was living proof.
What steps did you take to cope? or to find acceptance?
1. I took responsibility for my own health. That means learning to cook, try new foods, and sticking to what makes me feel good. This was extremely empowering and put the control back in my hands.
2. I used Crohn’s in a positive way by starting my website and nutrition practice. It gives me a way to educate others and give back.
3. Involving friends and family. I did not hide who I was or what was going on. Friends and family were open to ask me about it and were thoughtful in keeping in mind my energy levels or going out to eat where I could find something.
What lessons have you learned in your journey while living with Crohns?
I learned that my body is not fighting against me, it is fighting for me. The common school of thought is that our bodies are attacking ourselves.
We are not told that environmental factors outweigh the genetic factors for developing autoimmunity. This takes out any control an individual has. My mission and my voice to my community is to share what is in their control and how they can improve their health.
I also learned that I am the best advocate for me and I am in control of who I see to get treated and I have a voice in my treatment.
I also learned that I am the best advocate for me and I am in control of who I see to get treated and I have a voice in my treatment. – Alexa Federico, A Girl in HealingTweet
What advice would you give to someone struggling with crohns?
- Never stop trying new things. Release what you think you know or have been told. Healing is multi-faceted.
- Develop a diverse care team. Aside from a gastroenterologist, hire a functional doctor or nutritionist. You might like having an acupuncturist or massage therapist. You might use an herbalist. Enlist the help of many minds!
- Use your voice. Speak up when you are confused or have concerns. Your voice is the most important one involved in your care.
Your voice is the most important one involved in your care. – Alexa Federico, A Girl in HealingTweet
What does living with crohns teach you that you wish others knew?
I wish others knew that Crohn’s is not a “death” sentence. You might not be able to cure it, but you can improve your life in many ways.
The body as a whole is all interconnected, including the mind, so it is important to think of supporting your health in a holistic way.
Take note of the thoughts and beliefs you hold. I made the biggest leap in healing when I started working on my belief system and perspective.
Where can we find your facebook group and blog?
Show Alexa how grateful you are for her wisdom and advice by sharing this with your fellow spoonies and friends!
A Girl in Healing is on a mission to help those living with crohn’s disease find acceptance and joy. We’re beyond grateful Alexa took the time to share her story with Sickly Confidential. You go girl!
If you know someone with an inspiring outlook on living with a chronic condition, rare disease, or terminal illness, we are looking for more featured writers. You can submit their information (or yours) here.
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