Today is 13 years since I was diagnosed with ulcerative colitis. I remember everything about June and July of 2000. It is pretty incredibly how I have managed to black out so many things and yet, somehow these memories are so ingrained in my mind. I remember sitting in my living room with my parents the night before after a day of no food (which at that time was a HUGE deal to me) and going through the prep of a colonoscopy and hearing my parents telling me that the worst was pretty much over. The next morning, my focus was just getting through the test so I could wake up, go home, and carry on with my life. Or so I thought.
When I woke up, I saw my parents and the doctor who I had met a week or two beforehand. This doctor started telling me that my intestines were too inflamed for her to do full scope but that I had ulcerative colitis (of which I had never heard of before), and continued to spit out how I could no longer swim competitively, how I needed to only eat rice, plain pasta and saltines, and that she was starting me on something called asocol which required me to take nine pills a day in addition to a steroid called prednisone. I had absolutely no idea what any of this meant and definitely didn’t internalize it at that time either (thankfully.)
Two days later, my parents and I went to visit my brother at sleep away camp since it was his birthday. I remember gazing at food and wondering if I would ever be able to eat “normally” again. I heard this doctor say something about this disease being with me forever but at that time, and in that moment, I really never understood what that meant. I just knew that things were changing but I had no idea how, why, when or what was really going on.
No one really explained it to me.
When I sat down to write this post, I did it with the intention of simply acknowledging this very important anniversary date in my life. But as I began writing it, my mind was flooded with thoughts about things that I wish I knew or had been told when I was diagnosed…or at least in the months, or years following my diagnosis.
I wanted to share some things I wish I knew with any of you who may be newly diagnosed or know someone who is:
1) There is no right or wrong way to treat crohns disease or ulcerative colitis. Do what you feel is best for you, your body, your mind and your life. Things can always be adjusted.
2) Inflammatory bowel disease plays with your emotions. The ups and downs are really challenging which is why a great support system is key and reaching out for help when you feel like you need is crucial. It is okay and healthy to ask for help. Crohns disease and ulcerative colitis are VERY difficult illnesses to live with.
3) Make friends with other people who have IBD…. Even if it just browsing through support pages on facebook. It allows you to see that you aren’t alone and that, for me personally, has been one of the greatest things for me to know with this incredibly isolating disease.
4) You didn’t develop IBD because you didn’t eat the right foods growing up, you are a person who doesn’t handle stress correctly, are harboring childhood trauma or have an inability to “let go” of the past. If you say this to someone with crohns disease or ulcerative colitis, you place blame on the patient which makes an already difficult illness even harder to cope with. I was a competitive swimmer, swimming miles before and after school in addition to dry land workouts in the afternoons multiple times a week, was 120lbs of muscle, ate fantastic, and couldn’t have grown up in a more loving home ….and out of nowhere I was diagnosed. There is NO REASON. It is NOT YOUR FAULT.
5) Listen to your body and trust yourself. Always. No exceptions.
Thirteen years ago I was about to embark on the most physically and emotionally challenging experience of my life. I had no idea what I was in store for but I know I couldn’t have made it this far without the support of my family. And this past year, I have met some of the most amazing people who have become truly irreplaceable friends. They, along with my family, have made me realize that no one should have to go through this journey alone.
We all need each other and life is a lot easier to get through with wonderful friends and family by our side.