I want to start off by apologizing for the quality of some of these pictures, I figured it’d be better to have them in bad quality than to not have them at all.
I’d also like to point out my reasoning for sharing my story is to educate and empathize with others who have gone through the same thing or something similar NOT to ask for pity or so anyone will feel bad for me. That is actually the opposite of my intentions. As I’ve said before I have found the most comfort in others that have felt comfortable sharing their stories so I decided on day one that I would do the same.
“If you’re going through hell, keep going” right?
Anyone that knows me well enough knows I’m not the type to let anything get in my way, not even a life-threatening disease. I really try not to let my Crohn’s Disease define me, even though I am usually introduced as “this is Lydia, she has Crohn’s”. However, my disease has shaped me into the person I am today, has affected every aspect of my life, and affects every decision I make.
Let me explain how this began,
This is me at my high school graduation: May 2014 and 120 lbs. (Thanks Avery for the candid).
Exactly seven days later I broke down and made my dad take me to the ER (I’d felt like crap my entire senior year) and I was admitted to the hospital because they were seeing signs of Crohn’s disease and couldn’t be sure without a colonoscopy. Within the next few days I’d have a colonoscopy and have my disease confirmed and end up having an ileocolectomy (removal of my ileum-about a foot of my intestines).
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Again, sorry for the quality 😦
At this point I’m not allowed to eat in order to properly recover from the surgery. I also had to relearn how to walk because I ended up having a pretty invasive cesarean section because my surgeons original plans of doing my surgery laparoscopically didn’t go so well.
Two weeks later I was released and left with so much prednisone, a walker to help me walk, and was 90 lbs.
Me on my first day home! (peep the hospital socks, absence of eyebrows and hair that hadn’t been washed in 2 weeks)
I had to have my mom give me a shower (literally), and I had to be taken for walks once or twice a day to make sure I didn’t get blood clots in my legs. I had to be babysat 24/7 to make sure I didn’t fall down the stairs (I was very, very weak) or that I had someone there to reach things/carry things/etc. I was not able to work, run, drive, etc. (anything other than eat, sleep, poop and watch TV) for six weeks.
Here I am on one of my daily walks with a cat that tried to follow me home (I am Snow White without the singing).
About a week later I was admitted back into the hospital for surgery complications. They eventually worked themselves out without having to have surgery again, but I was in a lot of pain and had to have another NG Tube placed and was watched closely for another week. I spent my 4th of July watching Red White & Boom out of the window with my dad after a long day of upper GI imaging (of which the barium got stuck, 0/10 do not recommend).
Here’s a cute close up of the NG Tube sucking a grape popsicle out of my stomach. The first one I had placed was during surgery, the second one was placed while I was awake which I also give a 0/10 do not recommend. (I’m really hoping everyone can read my sarcasm because I had no choice in any of this).
It was during this visit that I received my first in-patient Remicade treatment. This is what is essentially saving my life and is (now) keeping me out of the hospital. It usually takes 2-3 infusions to really kick into your system, luckily my third infusion was right before I started college.
I also convienently had a PIC-line placed, from which my nurses give medicine through and draw blood from. The picture above is me getting ready to have the PIC-line placed. Everyone had to wear masks or leave the room in order for everything to be sterile. Unfortunately, this wasn’t very permanent and left this (below) when removed when I was released.
Luckily I was released in time for our family trip to Disney World. I was having a grand ole’ time for three entire days (out of the seven) until I had another flare and ended up back in the hospital down in Orlando. There wasn’t much explanation for this other than it was just a severe flare that was to be expected. I was released in time to shower and get to the airport and make my flight home.
Here’s Avery wheeling me through the airport as I was far too weak to walk through Orlando International Airport. (As you can see the prednisone is starting to catch up to me).
Somehow, I made it through the next few weeks and moved to Ohio Wesleyan and started my freshman year of college. I managed not to have another hospital visit until February.
Here my dad and I are at the hospital near my school. I should mention that through all the nights I have had to stay in hospitals (roughly 60) he has not missed one night. He’s slept in the little window-couches meant for visitors to sit on. He’s slept in recliners. He even got his own hospital bed over my second stay in July 2014 since I had a pretty big room to myself. There were some days he would wake up and go home and shower before going to work. While he was at work my mom would come sit with me and feed me and bathe me (literally). He’d come back to the hospital after work and my parents would get dinner together there at the hospital and then my mom would go home and go to bed and he would fall asleep at the hospital with me and the cycle would start over. Talk about dedication. (If you’re wondering what happened to Avery that summer, he was basically forgotten and/or passed around by our extended family members. Sorry little guy).
The hardest part of the whole journey was not the surgery and the recovery that took forever (because I am auto-immune). It was not the year of pain and confusion that came before getting diagnosed. It’s not the colonoscopies and the Remicade and the doctors appointments and everything else that comes with a bowel disease. It was the prednisone, and starting my first year of college looking like the picture on the right instead of the picture on the left.
I kept trying to tell myself, at least I’m at a liberal arts college where no one knows me and no one can tell I’m sick instead of a horrible, judgmental high school. This was true, everyone said “I would’ve never known if you wouldn’t have said anything”. Whether they were just being nice or not didn’t matter, I always introduced myself as “Hi, I’m Lydia and I’m not usually this fat, but I’m currently on 40 mg of prednisone”.
It sounds ridiculous and like a total “first world problem” for this to have been the worst part of this whole ordeal considering that in some countries (or before modern medicine) I would have just died from my intestines blowing up. I should’ve been thankful that I was still alive and that they caught the problem soon enough. But a side effect of predisone is depression, and man did it hit me hard. Yes I hid it, and yes I made fun of myself on social media before anyone else could. This is how I coped. But in reality I couldn’t even look at myself in the mirror.
Thanks for never noticing any difference in me as we’ve grown together, Henry. I’ve only felt love and happiness from the little bundle of joy that you’ve been for the past two years. The same goes for you, Janna. I know you would have told me if I should start dieting but I guess you never noticed a difference either 😉 I love you both immensely.
It was hard to go from a normal weight of 120 lbs down to 90lbs in just two weeks. And then because of prednisone go up to about 130 lbs in the course of a few months. I knew I wouldn’t stay that way forever. I’m now down to 110 lbs and struggle to stay there even though I eat as much as I can and do absolutely nothing to actively lose weight.
This brings me to my next point. I can’t tell you how many times I’ve heard “I would kill to have a flat stomach like yours” or “I wish I had a thigh gap like yours” etc. This confuses me because I don’t think people realize how much “I would kill” to be able to not have such a restrictive diet or not to have to sit through three hour Remicade infusions that is ruining my skin and causing my hair to fall out slowly but surely or not to have my whole family worrying about me every single day and night.
Honestly, I would give up the flat stomach and the thigh gap if it meant I could just be a regular 20 year old that didn’t have to base my every decision around a disease. I understand some people might see it as “she can eat whatever she wants and never gain weight and she’s lucky” but in reality I look this way because I’m sick, so please, think first before you say these things.
Back in June 2014 I had my ileum removed. Your ileum absorbs vitamins and nutrients from your food. Now that I don’t have an ileum I have a hard time absorbing any nutrition. So techinically yes, I eat whatever I want (other than what I’m restricted from eating) and have a really hard time keeping my weight up because I absorb nothing, so yes, I’m skinny.
Crohn’s, for the most part, is an invisible disease. No one can tell I’m sick from looking at me, everyone just thinks I’m 16 years old (mom and dad’s genes don’t help this either). I could qualify for disability, if I wanted to. I have to check “disabled” on job applications.
However, if I had the choice to change everything that has happened or that will happen, I wouldn’t. I have an understanding of the risks I may endure in the future and the precautions I will have to take throughout my life in order to try to avoid them. I also understand that I simply may not be able to avoid some of the things that may end up happening. Regardless, I still wouldn’t change anything. I had to grow up quite a bit during the summer after I graduated high school. I now have such an appreciation for life, probably because I have had to spend quite a few days cooped up in hospitals. I now realize what is important in life, things like my health and my family and my happiness are more important than stressing out about small things. The phrase “this won’t matter when I’m on my death bed” has gotten me through the first half of undergraduate school.
I’ve had so many people come to me with questions, whether it was because they needed information for a friend/family member going through something similar or they were curious. I’ve had people use me in their projects and papers. I’ve had a someone working as a nutritionist come to me with questions because he had a client with Crohn’s and figured it’d be better to get info straight from a source than to get incorrect information from Google.
I’ve received such kind tweets and private messages and text messages sharing their support or saying that I’ve inspired them. All of this is why I’ve been able to remain so strong and why I have decided to be so public about my disease.
You deserve a cookie for making it to the end of this super long post, the sad thing is I tried to leave quite a bit of the nasty details out (for reasons you can guess I’m sure). If you have any questions or comments feel free to contact me at here.
Instagram/Twitter/Snapchat: @lydiamwarner
LW 