I was only 11 when Crohn's changed my life forever.
Today I am almost 28 years old. It was around this time 16 years ago (Thanksgiving to be exact) that I was admitted to the hospital for severe abdominal pain, weight loss, diarrhea, and vomiting. I remember being so scared and just wanting to go home. It took about a month of endless testing, poking, and medication trial and error before I got my diagnosis and would be able to go home. The diagnosis devastated me.. no more of my favorite foods, 12 different medications I’d take daily, a million doctors appointments, and I was attached to my moms hip because we just spent a month in the hospital together.
Sudden anxiety about going to school
All of a sudden school gave me anxiety. I couldn’t fathom a flare-up happening where all my friends were. I was so embarrassed about being sick, I didn’t want ANYONE to know. Every doctors visit I’d pray there wouldn’t be any blood on the little card they would use to check for blood after violating me with their finger in my butt. It felt like it never got better. By 15 I was on chemotherapy because nothing else was working, and biologics were not used then like they are now. I ended up dropping out of high school. I couldn’t hold down a job. And, I was so damn depressed and I hated my body.
It had been years and I still hadn’t really come to terms with it all. Everything was so hard and I felt so alone. There were days even my own mother thought I was using my disease as an excuse. As I got older and dealt with crazy weight loss, I’d be accused of being a drug addict and a Hypochondriac. Relationships were tough cause what girl wants their boyfriend to know they have a pooping disease. I really struggled to keep friends .. it was like healthy people were my worst enemy because they just didn’t get it! They still don’t. I eventually got so fed up I started fighting back and really advocating for myself.
Fighting for my life
I went back to high school and when they tried to kick me out for absences I started to look up my rights. Turns out I was entitled to a 504 Plan, and I made sure I got one. I had a daughter by this point which gave me something to live for. I graduated 4 years late but I did it! 6 months later I enrolled myself in college, and a year later graduated a medical assisting program. I was compelled to work in the medical field after all the shitty nurses and doctors I dealt with. Because, I knew what being a patient was like and what I expected and I wanted to be just that for my patients. I learned real quick working full time was not something my body could handle. After 6 months of working full time, I got really sick. It took 2 years to bounce back from that.
It wasn’t until I met my fiancé 3 years ago that I would be able to accept my body and this disease. His love for me (all of me, Crohn's included) that I was able to love myself. I’m so lucky to have the love and support he gives me. It’s been a long, long journey. Things are constantly changing .. foods that once were okay to eat become foods that cause flares. The list of things that don’t bother me gets shorter and shorter over time. But I feel like I’ve really taken my life back. I do my best to be productive, but my fiancé will take over everything when I suddenly get really sick. I’ve realized how important having some type of support system is.
Support groups are important!
I have my online support groups and that has been life changing for me. Having people to relate to is huge. I still have my very bad days, but now I have good days too. So much I once took for granted, I appreciate wholeheartedly. As much as I hate this disease it has taught me so much about perspective. It’s hard to cram so many years of illness into a short story. If I told everything in detail I’d have to write a book! However being able to share a fraction of it feels good. Thanks for taking the time read my story. Every single one of you is a warrior, God bless.
What type of IBD have you been diagnosed with?