Crohn's Disease Forum » Your Story » Success Stories » Hello I'm new here!

08-26-2018, 06:07 PM   #1
Join Date: Aug 2018
Location: Indiana
Hello I'm new here!

I am a survivor of Crohn's Disease and I am in remission. Everything I've written is just the highlights of my journey to remission. I don't know how to exactly start, but maybe just going straight into the very beginning of the story.

In 2013-2014 (my freshman year in high school) my social life was pretty rocky at home and in school. In the middle of my freshman year is when I began to feel just slight pressure in my insides throughout the day. I did not think much of it because my focus was on getting through high school and I also had pretty much developed depression and social anxiety due to a lot of drama and unneeded stress throughout the years in school. I started to lose weight over the years, but I did not think anything of that either. In my sophomore year in high school (2014-2015) it got worse so there were about four hospital visits made. The doctor would misdiagnose my illness as "gas", "dysmenorrhea (painful periods)" and eventually my parents took me to the emergency room and they diagnosed me with acid reflux disease.
They kept prescribing me ibuprofen and I cant remember what they prescribed me for the acid reflux, but those meds made it worse.

I stopped taking the acid medication after a few days. A week or two later the pain grew worse and it got to the point that my insides were making audible sounds to the point that everyone in the classroom could hear it. It was hard trying to suppress the noise. I would try things like covering my belly with a jacket, stopped eating during the school day, looked for online homemade remedies for gas. Surprisingly in some way the remedies worked for a day, then a few days later I felt so sick. My parents said I still had to go to school because I had already missed some days out of school for the doctors appointments. At that point my parents began to dismiss it as a mental issue, so after that point i was pretty much left on my own.

My "friends" began to distant themselves from me because I had been the weird kid throughout my schooling, but my weirdness started to magnify itself and I just felt so distant from the whole world and no one really understood me for who I was and what I was going through. I think everyone throughout their struggles focuses on some type of motivation/goal to get them through it all. I personally am a Christian and prayer is what got me through it all. Hopefully this does not offend anyone in anyway that's just what got me through years of struggles and that's just who I am. At this point in my life which was near the ending of my sophomore year the consistent coming and going pain throughout the day became my reality and it made me start to give up on finding out what was wrong with me. It got to the point that every time I moved throughout the house my body was so tired and almost everything I ate came back up and rarely anything came out the other end. I could barely get any sleep because of how painful it was and after summer break started I literally had to sleep on the couch because I could not sleep in my bed.

Every night I prayed that everything would change and that in some way I could go far away from where I lived. There had to be some type of perfect world out there where everything would be okay and there would be no pain. The next two months were spent with self-diagnosis and isolation from anyone. Every time I wanted to go to the hospital my dad would tell me "drink water" and my mom got annoyed. It was mostly a cycle of arguments that got nowhere and eventually I gave up. At the beginning of my Junior year (2015-2016) a few days in I was taken to the hospital and stayed there over night because they finally decided to do a cat scan which showed an partial bowel obstruction and a hernia. As a result I was I think 82 pounds before surgery and 74 after. They transferred me to a different hospital where they did my first surgery and diagnosed me with crohn's disease. My mom was devastated and both my mom and sister stayed at the hospital mostly every time I was there.

I woke up after my first surgery and had no idea that I had a stoma until a few days later. This made me feel discouraged, but prayer had brought me this far. They decided to put me on remicade and steroids i think which never worked out. Sometimes when I took remicade I had to take prednisone's to treat multiple cases of inflammation and an abscess. They tried to put me on humira and it worked for some time, but I prayed and did not need it anymore. The surgeon could not find any trace of crohn's disease in my tract. Then I was able to eat everything I was not able to eat before. I feel like throughout this I was blessed to be alive, meet so many different people, and experience/learn a lot of things I never knew before. Even though I face some new problems like what I want to do in life, it makes me grateful to experience I hope this story is of some encouragement to someone else. God Bless!
08-26-2018, 06:56 PM   #2
Lady Organic
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Join Date: Apr 2013
Location: Montréal, Quebec

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Welcome to the forum Seun
Thank you for sharing your survivor story! Crohn's got me into having to redefine my personal life and professional life at a young adult age. I am sure you will find your answer as to what will be interesting for you. It may be an idea to meet a career counselor to guide you in your choice. Wishing you well and an ongoing long remission!
''UC-like Crohn's'' (2001)
wrists + ankles arthropathies (2013)
on: Humira
Diet: ''IBD-AID'' : organic food only, Vitamin D + B12 shots
Past meds: prednisone 50mg, 5-ASA (pill, rectal), cortifoam, cortenema, Imuran, Purinethol, methotrexate.
08-26-2018, 07:12 PM   #3
Join Date: Aug 2018
Location: Indiana
Thank you so much for the suggestion Lady Organic! I will definitely keep in mind career counseling. Thank you for the good wishes. God bless!

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