Prep time! :D

Today’s the day… the day of the dreaded prep. I’m going in for my yearly colonoscopy tomorrow to check and see if my medication is working. It’s always this time of year it seems to come: summertime and the weathers nice. But hey it’s just another day in the life. I’ve been feeling okay lately. Just okay. I’ve been a little more tired than usual, which isn’t necessarily a bad thing because with the steroids I was staying up night after night, the insomnia was REAL. Also, my appetite hasn’t been there but I’m not entirely upset about that either since I packed on the pounds during my last 9 month stretch on and off of the roids (Prednisone and Uceris). A lower appetite also means this prep won’t be as miserable as usual. I have pain here and there, very localized though, I can almost put a pin on it. It’s my usual pain, like a knife in the stomach kind. You have to catch your breathe a little bit from it. But, it’s definitely less frequent than normal *thumbs up!* 😀

So after my recent off of Uceris, as you know, I’ve had good days and bad. I seem to be having a lot of IBS symptoms unrelated to Crohn’s. I’ve had to use several courses of antibiotics to treat these over the last 6 months or so. When my taper from steroids starts I almost prepare myself for the days on days of fatigue, countless and very urgent bathroom trips a day, and unbearable stomach pain. But knock on wood, this time like I said I am doing okay! I’ve been completely off Uceris for about a week and a half now, which doesn’t seem very long but it is. It’s nice to see my body coming back and my face going back to its normal size ha! No more moon face woohoo! Just crossing my fingers my insides show some good news as well.

I’m anxious for tomorrow to be over with, I usually go under full anesthesia for the colonoscopy and this time I’m not. My doctor only performs them under partial sedation and the last time I had partial… it was a nightmare. Probably one of the most painful things I’ve endured besides kidney stones. I was sick on the couch for a week afterwards. I’m hoping I’m more healed on the inside so the recovery will be easier. After this procedure we’ll see if this run on Humira (my third time in about five years) is working. I went from an injection every two weeks to once a week a few months ago and it seems to be helping more. This is frustrating though because no matter how I feel if I still have inflammation or signs of active disease then I have to visit other options. I think this just stems from the everyday struggles of living with a chronic illness. We don’t know what completely “normal” or “healthy” ever really feels like, and the reality of it is most of us won’t ever know. But, my doctor tells me I have two more options we can talk about. Thankfully the world of medicine is ever expanding and if those don’t work I will most likely qualify for some sort of trial, or some other treatment will hit the market. That’s the thought, or hope.

Tomorrow I will be participating in research by donating samples of blood, hair, nails, and tissue to help Crohn’s research. Even if it won’t directly benefit me, it might save someone else’s life in the future. So please keep helping me raise awareness and money! Some of us desperately need it! And to those doctors and medical workers who are constantly pushing for new treatments, my family and friends who are a constant support, and all of the people who share social media posts and donate money, I owe you all my whole life. I wouldn’t be here without all of you.



My First Thought

Lately, my life has been a big rollercoaster of dreams and thoughts but no action. I lay here in bed and ponder questions like when am I going to be able to go back to school, am I ever going to get a good job, or will I ever be able to support myself? Things healthy people my age are doing at this time in their life I’m not able to do. Everyday I see my friends planning for when they graduate and what types of jobs their going to work towards. I then hide away in my mind wondering if that will ever be me.

Living with Crohn’s disease is not an easy task to say the least. I am constantly wondering how others my age are dealing with this illness and thought it might help one person, or many, to read my story and relate (as well as have an outlet to complain and/or celebrate my days of feeling great!). One of the major annoyances we face at all ages is my favorite, the famous “well you look great”. Yes, I admit when someone tells me I look good it boosts my confidence a little bit, but after a while don’t you just get sick of it? I want to say “take a look at my insides and then tell me what you think!”

But, a little bit about me.. My name is Michelle and I am 21 years old. I have had Crohn’s Disease since 2005 (well I was diagnosed then). I am a very active person as I was a dancer and gymnast most of my life. This disease doesn’t define my life, but that is only because I don’t let it. I have tried almost every treatment out there and am still finding myself in the hospital one to two times a year and on prednisone more than I want to be. I travel about 2 hours to see some of the best doctors in the country in Boston, MA and seek every opportunity in new treatment as I can. I have a very difficult case to treat and as you can imagine it gets frustrating. My support system is unbelievable though, which I am so lucky for. Most comes from my family, especially my mom.

At any age this disease is pretty shitty and embarrassing (pun intended), but you have to laugh about it. Admit it, we’ve all had our accidents and potty emergencies and we know our way around every bathroom in town. That’s just how it is. At my age, the college years, when you’re supposedly “figuring out who you are” this disease is especially hard. Relationships, partying, making friends, getting jobs, an education. This illness affects every part of your life whether you like it or not. It’s just about how you deal with it and who you surround yourself with. You could hide and let it consume your life with embarrassment and shame OR you could tell it how it is, make the best of it, and laugh your way through the hard, embarrassing times. It is ultimately up to you.